Josspinningworld

Honey Mustard or Ranch?

2011-08-07T14:30:00.000-07:00

My husband has developed a thing for salad dressings. . . especially Honey Mustard. (If you want to get specific, he loves O'Charley's Honey Mustard!)
I, on the other hand, love ranch. It's good on salads, great for dipping veggies and hey- makes a great mixer for chip dip!

While I do not care what salad dressing you use . . . Ed does. He is specifically concerned what I eat and what I offer Scott.

Scott loves ranch dip with fresh veggies - he would eat boundless amounts of it! Of course, being on Coumadin, he has his restrictions. He likes the ranch on his salad as well and I usually humor him with it.

Each and every time lately, when Ed sees me grab the Ranch bottle he begins his tyriad on "why not give Scott some honey mustard - he would like it".

It has become a contest of sorts - who gets to the salad first.

It has me thinking today that how we treat our special needs children is the same sort of pidgeon-holing. They must behave this way - or they would never like to do that!

Why -or - why not? Why do we assume any behavior is a result of their "Syndrome" or medical labels. That person has Downs so they have to be friendly - that person is autistic so they do not want to be touched. Huh? Is that not a little narrow minded?

It is today's proper protocol to put the "people first". It is not correct to say a mentally retarded person, it is a person with mental retardation - if you HAVE to use the "R" word.

I think too often we look for reasons when there just aren't any. You like something or you don't! No real reason why I choose Ranch over Honey Mustard - I just prefer Ranch.

If Scott or Sawyer were to be so selective in their food choices - professionals might say it is a marker for their specific problems. Odds are - they are like me - they just like the taste of one over the other - no real reason.

I used to love Bing cherries until I was about 8 years old. I spent one whole afternoon sitting in a huge cherry tree in my Uncle Joe's backyard with my cousins - eating Bing cherries - ALL AFTERNOON! When my uncle pulled into the driveway and saw us covered with cherry juice - we scrambled! By the time I got home- I was not feeling well and paid the price for all that Cherry eating for the next day. To this day, I can eat cherries but do not really love them any more. Just a taste and I am done!

I guess where I intended to go with this food parable was to say we should not label or prejudge what ANYONE can do or would be interested in doing because of their dna or medical labels. People without arms can surf, people without feet can run a marathon - the only limits anyone has are those we inflict on them. In being protective, we shelter those we love from the thrill of trying new things. It is hard to take our hands off and let our loved ones fly - but the look of happiness when they soar is worth the butterflies we have in our tummies when they leap!

It's time for dinner - the salads are ready - and there are several bottles of salad dressing on the table- tonight Scott can pick his own!

Bittersweet day

2011-06-29T13:45:00.000-07:00

Tomorrow will be a bittersweet day ... one I have looked forward to, yet now that the time has come, I am not so anxious to see it arrive.

I am leaving the ARC Thrift Store. Counting the several "Super Sales" that preceeded the actual opening of the thrift store in 1996, I have been begging for cast-offs and organizing used socks for 20 years! TWENTY YEARS!!

Several things went into my decision to call it quits - I am old - older some days than others - my "parts" give me pain after a day of hauling bags to the trash or dragging boxes into the closets.

Even in a down economy - our bottom line often turns "pink" - not quite red ink, but darned close some months. The stress of worrying over bills paid or not - gifts given or postponed - has had me up many a sleepless night.

So I decided to turn the day to day operation over to someone else. I must say it is sort of like taking your child to college! How will they be treated? Will they value my baby? Will Mr. Roosevelt and Ms Barbara get their hugs when they come in and will they remember to save flowers for Becky or hat pins for Steve?

Who will listen to Ms Betty's lab results and encourage her to continue chemo? Who will call Ms Pat to check on her shingles? Who will take Barbara out to eat for Christmas?

Who will bouy my spirits when Sawyer has a bad day? Or when I am missing Dawn? Who will I share my pictures of the two cutest grandchildren in the world with after I leave?

When Scott had his heart surgery and when we learned of Sawyer's Williams Syndrome - it was our customers who held my hand and gave me the courage to face the next obstacle. They prayed with me, cried with me and had far more faith in my ability to survive another heartbreak than I did.

I guess I will miss my friends - my safe zone. To any and all who may see this - Thank you ARC Thrift Store - you will be missed by me but not forgotten - and to those who remain - you had best do a good job - be kind to my buddies - and as Ms Katie told me many years ago -NEVER, NEVER GIVE UP! " I love you all!!

Another busy holiday season survived!!

2011-01-16T09:56:00.000-08:00

"Over the hills and through the woods to grandmother's house we go...."

It seemed like a simple thing when I read about this in the Laura Ingalls Wilder books like Little House in the Big Woods" or "Little House on the Praire". The family all loaded up in the wagon, with a quilt that Ma had made, maybe a ham and a jar of jelly or two - but no real big plan - other than getting there without being scalped or eaten by the occasional bear.

This year Dawn, Greg and kiddies came early, (Dec 14th) and we planned an early Christmas in TN. The only drawback was to actually be READY by Dec 14th!

While others were gently planning future holiday events - I was breaking into a dead sweat about OMG (!) I am totally out of time to clean, bake, shop, wrap (the worse of these is WRAP! I hate to wrap and would totally go with gift bags 100% - BUT my family is a family of peepers and nothing would be a surprise at Christmas with bags!)

I did manage to get most of my "to do" list accomplished and I do not think anyone missed the forgotten items!

The tree

was assembled the Friday after Thanksgiving! Scott was thrilled! Never before had he won the battle of getting the tree up so early! he thought things were really going his way...little did he know!

We had a busy week of preparing for our faux Christmas! More shopping - more cooking -which meant more eating! We made our must-do visit to Raffertys and as usual the kids were thrilled with the potato soup! (Me too!!)

We decided to make Fri Dec 17th our early Christmas so that the kids could enjoy playing with their gifts! Playing with the toys I have here probably was boring and it was much too cold to go outside to play! Gwen's major project was to undecorate grammy's tree!

and I have to say...she did a bang up job of it! The only casualty was "Lucy's" head off one of my Peanuts ornaments - but a little glue fixed that!

We actually had to break down the gift opening in a couple different sessions as it was a little over-whelming. Everytime there was more than 2 people in the living room - Scott ran in and sat down - just in case presents were to be forthcoming!

This was truly a "Toy Story" holiday as the main players were "Buzz", "Woody" and "Jessie". (Characters in the Toy Story movies for those who do not have children under 10). Sawyer preferred that Woody not wear a hat (his preference as well for himself) - but Gwen demanded that Jessie have hers on at all times!

Scott did get his alloted share of the goodies as well - but it was hard to make him understand that this was not the "real" Christmas - and we would do this all again on December 25th ...GOOD GRIEF! WHAT WERE WE THINKING??!! WE COULD HAVE GOTTEN AWAY WITH ONE CELEBRATION - HE REALLY WOULD NOT HAVE KNOWN THE DIFFERENCE!

But we didn't- so he actually got a few things held back and just had to make do with the dozen or so DVDs he received on Christmas #1.

Some of the fun events we did get to do together though was to visit Chucky Cheese.. merciful heavens - did I actually say that? I used "fun" and "Chucky Cheese" in the same sentence? Another brain cell just died.

Anyway.. we did go and it was fun. Little ones make it fun! Gwen and Sawyer got to ride the mechanical horse

which I am sure was probably pretty lame to Sawyer who takes hippo-therapy and rides the real horses at home.

Gwen's big thing was putting the coin in the games (any game will do but she preferred ski-ball) and then ripping off the tickets! She had acquired a fistfull of tickets before we realized she had also been taking the tickets of other game players - who were too kind to chase the little pint size kleptomaniac and recover their game tickets! Dawn wandered down the row of game players handing out tickets and saying "I am so sorry"!

Sawyer found Grampy to be a willing "horsey" at home and loved to get him down on the ground for a friendly romp!

We went down to the river to see the light display and although it was bitter cold, it was fun to see the pretty lights and watch Gwen and Sawyer react to the other people and DOGS that walked by. As we often wonder how much Sawyer is actually understanding about what we say, it was interesting that at one point Ed asked me what our plan was and how far were we going to walk. I casually responded that when we got tired we would be done. I did not think about Sawyer actually listening as we walked along but he threw his hands up in the air and as he turned around he said "I'm tired and I'm done!" I giggled as I walked back to the car as our very astute little grandson -once again - has proven to me that we cannot underestimate what is going on in his smart little mind!

Probably one of the best parts of the holidays was being able to come together as a family in Elkton with Ed's family. Dawn had made her Aunt Lucille a 50th anniversary quilt - which was a great surprise for Lucille. Even better was watching the next generation of cousins meeting and playing together.

Yes, our holidays were a little different - and yet the basics were the same- love of family -joy in the love of children. For what better time to wrap yourself in the joy of a child than at Christmas - a celebration of the Christ child.

May 2011 be a blessed year for all - hopefully a year that mends old wounds, heals broken hearts and brings happiness to those who ache. God Bless

Open letter to K-Mart and other sales sources!

2010-12-09T12:53:00.000-08:00

It is the holiday season - shopping season - stress season!

We make a list, check it several times and head out to the brick and mortar stores or plop down in front of the monitor and order on line....

It has been almost 3 weeks of waiting and wondering if my holiday order would come in from one of the "Marts".... I have come to the conclusion - "No! It won't"!

Let me make a generalization for most shopping arenas - do not play me- (or other shoppers). Be honest! If you do not have it, say so!! Just be up front and honest!

Is it so hard to say,"I'm so sorry, that is a popular item and we have sold out! I would be glad to assist you with similar items if you like..." Please do not string me along with "Your order is being processed - you should have it in 5-7 days" . Maybe in 5-7 Neptune days - but not in Earth days!!

Even to a trusting sole like myself - it will soon become apparent that the items just aren't coming! You don't have them (if you ever did) - and I am not going to have them either. So give me my money back - smile and wish me a Merry Christmas as I trudge off to find my holiday spirit elsewhere!

Here is my gift to you Mr. Businessman: Be honest quickly, tap dancing around the issue will not make you look better!

Oh- and Merry Christmas!

Shopping Horrors!

2010-12-05T13:12:00.000-08:00

Ho Ho Ho! We are in the midst of the Christmas countdown and I was feeling rather cocky... and thus comes my "come-uppance"! Pride goes before a fall and all that stuff!

I had done the majority of my shopping online... "Priding" myself with online coupons, free shipping and major discounts! Then the second shoe drops! And wham! I am going to be forced into the brick and mortar stores after all!

You see I ordered several toys for great nieces and nephews, etc. Nothing extraordinary but necessary to cross their names off my lengthy list! (Again puffing out my chest in making such super selections in such an easy manner!)

Then I began to realize that nothing had been delivered. NADA! ZIP!

Sooooo, I began to scan my emails... where were these non-delivered items? Today I received an email from K-Mart- it seems they decided to cancel -CANCEL- my first order- completely - everything gone! (Do I hear the disappointed gasps from small tots having the Toy Story figures ripped away?)

Not wanting to deal with emails and stupid buttons, I opted to call the 800 number. Amy was very friendly and almost as shocked as I was to see the holiday happiness disappear into the nether regions of the internet! She volunteered to reorder (Nope she could not see any reason my order was dumped either - but I was beginning to feel a little hurt mixed in with my anger!) She is going to "expedite" my reorder and give me free rush shipping... we'll see!

Upon further review, I find my Shutterfly order was split and only half delivered and the other half -according to them - also delivered - but I know better! It is not here! So "Linda" also known as Ajdon, is reordering and assures me it will be here ...sometime!

Ah but wait, it gets better. Going down the list of orders, I check out Sears. This should be easy - Ed only wanted one thing... which I now see by this ignored email has been shipped to....wait for it..... SAWYER IN MASS.

Yup- my 3 year old grandson will soon be the owner of a massive battery operated Craftsman skill saw....

I can see the shock and awe on Greg's face now as little Sawyer opens THAT box! =-P

Could there possibly be more... Yup! Yet another order was split and one item shipped and the other....well, we may never know!!

So on Friday, instead of doing all the catch up things I had planned to do, I will dash to Walmart and replace all the goodies that are floating through the postal neverland.... I am going to the doctor tomorrow to see if they really do make a pacifier out of valium!

While Scott is happily counting the days to Christmas - I will be slowly sucking my way into a calmer holiday!

STILL AROUND AND STILL KICKING!

2010-08-07T09:52:00.000-07:00

What a hot sultry summer! A real Tennessee Williams sort of summer! If I were a drinking sort of person - I think I might ask for a "mint julip"!!

How far back do I have to go to pick up the memorable parts of our summer? I suppose I should start with April when we met Dawn and her family in Florida... Ah! Beautiful Florida! Sawyer loves the water - any water! He showed no fear of the ocean and marched into the waves like a trooper - of course he held the hand of his Grampy or his Daddy - but he went! Gwen, on the other hand, loved the sand -(filling buckets with it or eating it- she loved it!) - but she did not want ANY PART of the ocean! Nope! She would raise those chubby legs and squeal if you tried to put her in the water.

We did not have a big plan when we went to Florida - We ate, we went to the beach - ate some more - went to the pool - back to the condo for more food! It was a fun week in the sun!

But every vacation has to end - and we had to come home too. We (Ed and I ) have come to the conclusion that even driving to the panhandle is not a straight through drive any more! Guess our sitting time is getting shorter as well!

Looking back at the Florida pictures makes me all too aware of how fast the kids are growing- Sawyer left his baby-ways long ago! He is a big "school boy" now! (more later) Gwen was just in the "pulling up" stage when we were in FL. but she came walking into TN in July! Even the week she was here she increased the walking ability. Of course that means she can reach more and get there faster!!

Scott has adapted well to the babies not being babies! They seem interested in what "Uncle Scott" has in his room! He has the cool stuff - DVDs, noisy cars etc! Scott is in his glory now - as it is August and his birthday is approaching! It is the first thing he reminds us of each morning and his last thoughts at night! It won't be fancy or large - but it is his birthday - and there will be cake so he will be pleased!!

When Dawn was here for the 4th of July - we spent a fun filled week searching all the hot spots for the the little ones! Hopkinsville has an awesome water park - slides, sprays and zero entry for the little guys!

Sawyer and Gwen check out all the water fun and we had a great day following them as they explored the water park! Highly recommend Tie Breaker to anyone in the Hopkinsville area!

I have been fighting with our computer for a few weeks - Ed decided to add "g-mail" to our account and now it over-rides my primary email! It refuses to allow me to visit Maria's website and I miss seeing how her girls are growing! I have tried to override it- exit the account and lots of other options. I am considering the "sledge hammer" approach! =-)

Sawyer will start his summer vacation from pre-school on Aug 12 (our schools in Clarksville are already back in session!!). We will fly to visit them before he goes back to school in Sept. They seem to get bigger and learn new things everyday! I love to see the sparkle in their eyes and the giggles as they think they have tricked the "big people" into doing things their way - such power in such little hands!

There are many ways to do battle!!

2010-05-31T08:56:00.000-07:00

When we think of doing battle, we think of Army, Navy, Air Force, Marines!

There are many battle fields - and the largest one is not shown on any map. It is the field of life for families with children with disabilies.

There are so many - too many - disabilities our babies can face. Some have large footprints on society and are well known- CP or MS -Downs Syndrome. Many others are known but to families affected and the children who do battle every day.

As a family affected twice, (both my son and grandson have different but equally traumatic challenges), I know too well how your entire life changes when you are called in for "the talk".

Well meaning friends have said "God knew who to give this special child to - you handle it so well!" (They have not seen me sobbing on the bathroom floor - with the shower running to cover the sound of my tears!).

Besides, it makes me angry - "God gave me this child?" "God DID this to my child , my grandson"??? Why??? What could I have possibly done to deserve such heartache?? No! God did NOT "do" this. It happened. Plain and simple. Sometimes we do not get the answers. We just have to struggle with the problem as best we can.

My aunt once said "God allows such things so that he can send those who mistreat them straight to Hell". Sounds cruel - but I can buy into that one.

The battles of this life do not all happen on the battlefields like Valley Forge or Normandy. They can happen in the schools, the hospitals the amusement parks that hesitate to allow a child with a challenge to ride the roller coaster. They happen daily and will continue to happen.

Like freedom, if not guarded and protected - it can be taken away. Free and appropriate education did not exist until my son was 7. Until then, it was up to each school district to allow or deny education to a child with disabiities on a case by case basis. Can you imagine being told your child does not deserve an education - however limited! I can. I once had an eye specialist tell me he would not write a prescription for eyeglasses for my son. Oh Scott needed them. He would not deny that - but he said it would be a waste of money to put glasses on a retarded boy! He said -and I quote -"It's not like he is going to grow up and amount to anything - like be president!" What??? Not many of us would have glasses if being president was the determining factor!!

That was the spark that began my crusade for Scott's rights. My plea to the next generation of parents of children with challenges (Oh that there weren't a next generation of disabilites)- DO NOT LET DOWN YOUR GUARD - MAKE SURE YOUR OPTIONS ARE KEPT IN PLACE! NOTHING IS SAFE - NOTHING IS GUARANTEED! Parents - stay informed - be active! Be sure your political representatives, Federal, State and local know you are there and watching! Watch the budgets - when it comes to cutting services- small groups will be the first to go! Keep supporting strong support groups likeTHE ARC. They are a great oversight group that covers all needs. Remember the larger the numbers the louder the voice!

So I thank my husband for his years of service to our wonderful country- and I charge the next generation of parents to step up and demand more for our children - all our children.

Happy Birthday Sweet Gwen!

2010-05-01T12:10:00.000-07:00

Time has flown by this past year. It seems just yesterday we were eagerly awaiting the birth of our much desired granddaughter - and now today - she is ONE YEAR OLD!
In retrospect, I can remember waiting for another little girl - my baby girl - to be born.

Things were less scientific back then- and although her daddy and I both wanted a little girl, all the docs said "be prepared for a boy! - It is definitely a boy!"

Well they were wrong! It was our beautiful little Dawn. She looked just like her daddy and he adored her (and still does).

Her birthday came fast too - and while she always wanted to be older and bigger - I often hoped time would slow down so she would be my "little girl" for a while longer.

Now, my baby girl is a "mommy" too. A very good one if I say so myself! She amazes me with all she accomplishes for her two little ones.

Today, her little girl becomes one year old! The beginning of a rapid aging process. It seems to be the turning point from baby to little girl.

Gwen is so much like her mommy - I see her doing so many things just like her mommy did at that age. She can be so sweet and cuddly- and yet I see the wheels spinning in her mind as she plots her next adventure!

There can be no greater treasure than the blessing of family - especially the smiles of your children and grandchildren. They fill your heart in a way no material object can!

So, although we cannot be with you today Gwen, I hope you know how much we love you- we thank God daily for the blessing of being in your life! May God watch over you and keep you safe in all ways. Happy Birthday smiley girl! May your next year be as exciting for you as this first one was for us!

Love you bunches
XOXO

CRY ME A RIVER - NO WAIT, I ALREADY HAVE!

2010-02-28T12:59:00.000-08:00

Have you ever been at the point where you just are so tired, you do not know how to breathe?

Last Monday - (Can it possibly only be one week past?) - we received Scott's new military ID card. Oh the joy and jubilation! It was actually good until 2032! That is a LONG time! I was so thrilled that my chest hurt! Peace of mind- that is what it was! The knowledge that Scott's enrollment in DEERS was good until 2032. (That is his validation for health care to any non-military reader!)

Why does bad mail always arrive on a Saturday? I mean there is nothing you can do but worry, fret and drive yourself absolutely crazy for 2 LONG days.

Of course you know this is leading to the point that I got some horrific news on Saturday- yesterday. We received a letter - very official - from the USAF - Scott's application for an ID card has been DENIED - TURNED DOWN - FLUSHED!

What??? how could this be? Just 6 days before he had his picture taken and the glossy new card was put in my wallet! Now they have taken it away?

When Ed came in - I bombarded him with the news. By now I was worked up into a total frenzy! I had almost pulled all the hair out of head and screamed to anyone who would listen - which means Scott pretty much got the brunt of my fury!

I pulled the application folder out of the safe and went over it page by page- how could they come to this conclusion?

The letter rambled on about Scott's income (duh?) and how it was over 50% of his needs...(Huge duh!) What income? If they mean his SSI, that should tell them at least 2 things...1. He is poverty level at best ($670 per month) and 2. He is disabled or he would not be getting SSI!

The letter goes on to say if we want to "claim" disability (and can prove it) - reapply!

The letter was signed by good ol' Brad Wing, who referred me to Linda Spielman if I had any questions. uh- yeah! Lots of 'em Brad!

My mind has been racing like Sawyer's MarioKart game - including the bumps and turns. Of course, I cannot call anyone until Monday AM - and then oh boy am I going to call someone. (Ya'all got bail money for me??) These people need to pull their head up where they can see daylight! Let's see if I can clarify for them. Scott is almost 43 - he functions as a 3-5 year old. He was born prematurely, (3lb 2.5 Oz) He has been in special ed until age 22 (clue here- look for it!) He has had an ID card since he was 10 - no breaks in eligibility (boing, boing boing), He receives services from DIDS (formerly Dept of Mental RETARDATION Services. I sent a letter reiterating his disabilites from his doc. YOU WANT MORE BRAD?

How about following my days of dressing him, bathing him, brushing his teeth - yeah and wiping his butt too! Does he qualify yet Brad?

(Take a deep breathe Joanne- Brad does not really care) You know, most days are good, and ironically, I would not change one hair on my boys head-- really! Would I change him and make him "normal" at this point? No. Then I would miss out on My Scottie! I would miss the crooked smile that reminds me so much of my Dad - The hugs and kisses - would a "normal" 42 year old man - interact with his mother like Scott does - probably not. If I had not had all this for 42+ years - my answer would probably be different - of course I would make him totally normal- whatever that is. However, I have never had Normal with Scott BUT... what hurts, what really hurts ... is having to PROVE time after time- my child is nor normal. Please document this for us! It is like rubbing salt in the wound. Over and over again.

So I sit here- banging away at a keyboard. Try to vent some of my frustration out on this machine. I have cried until I can't cry any more. (well maybe a little as I always cry when I get mad and by tomorrow AM I will be fuming again!!)

You would think after 42 years it would not hurt so badly- but it does - so now I have to find a way to "document" my son's disability without sounding bitter and antagonistic. Would you believe the questioners actually get testy if a parent resents having to go over all their child's shortcomings? I will bet you that Brad's flunky "Linda", tells me "Please do not take this personally". Well, Linda - it is personal - and that is the difference between us - to me, the mother of the "different" child - IT IS PERSONAL - AND ALWAYS WILL BE!

Our big boy is turning 3 !!!

2010-02-07T10:49:00.000-08:00

On February 14,2007 my life changed forever ... in a very good way. Our grandson, Sawyer Matthew Low was born. Medical experts say you cannot live without your heart - well, I lost a big part of mine that day when I held this tiny little boy in my hand- and he never gave it back!

Sawyer was born on Feb 12th 2007. He was a little premature and his binky was bigger than he was! He was so beautiful (still is!). As I flew home from MA on Valentine's Day that year - I wanted to tell everyone on the plane -I have been given the most perfect little boy in the world and I have pictures to prove it!

A few weeks later, Dawn flew home with her little "perfect" baby and Ed agreed I was right - he was perfect! From the picture of Ed meeting his grandson at the airport - you can tell - he was just as hooked as I was!

Over the course of the next few months, we watched from afar as Sawyer's devoted parents battled one scary problem after another. Sawyer had a hernia that required surgery. He had reflux that resulted in muliple clothing changes and concerns over his low weight. But grow he did and our love grew with him!

At his first year physical - our hearts were broken when the doctor's told Dawn and Greg that Sawyer had Williams Syndrome. His future would not be the one they had invisioned - but day by day we have come to accept that and let Sawyer set the future for himself.

It took Sawyer a little longer to do things - to learn new tasks - but he did it - in his true Sawyer fashion!

At a very early age, he developed a close attachment with his "Grampy". (Needless to say Grampy was already attached to him!)

Sawyer always had a buddy to go to the park and play with him when he was visiting Grampy!

I cannot imagine life before Sawyer! He is such a huge part of our lives now! Each day he amazes and thrills us!

Now he is almost 3 years old! He is a big brother now - he has a little sister Gwen... who I might add seems to think he is pretty amazing as well! He will start pre-school in just a few days- another step in becoming a big boy! As you grow up, always know you have so many people who love you and are cheering for everything you want in life!

So happy birthday little guy! Enjoy the cars (his favorite thing right now) and the cake and all the fun that comes with having a birthday. We love you so much and can't wait to see what you can teach us next!

The last Christmas package is mailed...finally!

2010-01-22T13:50:00.000-08:00

The final Christmas package has finally been delivered! At last! whew!

It is easy to get caught up in the spirit of Christmas and forget that when your family comes to your house for Christmas - chances are YOU will have to mail the goodies home for them! You need to think of this when you are shopping - not on Christmas morning when all hell breaks loose and paper is flying like a ticker tape parade on Wall Street for a special occasion! Prior Planning - that is what was needed!

Also, when you mail several boxes, you need to inventory them- get organized so in case of loss...yeah! yeah! yeah- you know where I am going...

I had scurried through envelopes of receipts last week, trying to remember what I had bought Gwen and Sawyer (primarily) - then I was going to coordinate my "what I purchased" against Dawn's list of "what actually has arrived". Thankfully, the last huge box that included Sawyer's "Shake and Go Racetrack" was delivered after a very long 2 week jaunt around the mid-USA.

Now, we can settle down and prepare for our little guy's 3rd birthday! (More packages to mail!)

Christmas was wonderful and exciting with Sawyer and Gwen here (with their parents of course!)

They are both so beautiful and change -almost - before your eyes!

Gwen seems transfixed by new sights and sounds. You can almost hear the wheels in her brain spinning as she figures out exciting new adventures!Of course to her, most new things are potential food....

As I told an old friend today as we were discussing our children and how they had grown up, I always knew Dawn was an excellent student, a adventurous young spirit, BUT as a mother, she amazes me! She was never interested in baby-sitting or goo=gooing other peoples' children as a teenager. I could not be more proud!

And Scott... what can I say? He was so excited to see Dawn and Greg get here! He had determined that Christmas would not be here until they arrived! He is my special occasion organizer! Already he is asking about "birthdays". (His will not be until late August!) He whispers the question "birthday?" and then answers a bit louder.."NOT YET!"

TIME TO STOP WHINING AND APPRECIATE WHAT WE HAVE!

2009-12-31T09:47:00.000-08:00

Just one more day and the hub-bub of the holidays will be behind us. For some, that is a "downer", for others, a relief! I suppose I am a blend of both -

As I try to finish up some of the projects I need to complete - I received this link to youtube and a video I have seen before - one I NEEDED to see again.

Each of us has moments when we think God has over-estimated our capability. Perhaps he gave this burden to the wrong person because I think I am a pretty good person and certainly did not deserve some of the rocks that have been thrown my way...

Then I watch Patrick Henry Hughes and his remarkable family and I hang my head in shame! I have a long way to go to improve my attitude and this video has once again set my head straight on the right path!

Take a minute and watch, you will not be wasting your time! (if the link will not work, just try to find Patrick Henry Hughes on You Tube.. the family video history is the best!

God Bless and Happy New Year Ya'All!!

http://www.youtube.com/watch?v=9xwCG0Ey2Mg

WHOOPIE! ALMOST CHRISTMAS! BRING IT ON!!

2009-12-17T14:57:00.001-08:00

Seven days and counting -- yup that is what we have left. It might be more traumatic if I counted the "to do" things - but I have decided to blank that out. It is either blank it out or take up drinking!

I have officially finished shopping - and the last on-line purchase arrived today and was promptly shoved in a gift bag - that ends the wrapping part too. I am hopefull no last minute brain surges reminds me of that special person I forgot to remember! Bring out the charity fruitcake - just in case.

Scott, dutifully, sits under the tree every day to make sure the packages with his name are still there. (He does not care if they say "to or from" ... he just looks for "Scott".

Dawn and her family arrive next Tues! Yeah!! I am sure it will be hectic - lots of energy (on the kids part) - lots of love all around.

So blessed am I! If I have forgotten to send anyone a card, or verbally wish a Merry Christmas, I'll do it now :

MERRY CHRISTMAS EVERYONE!!! GOD BLESS YOU ALL IN THE COMING YEAR!!

TICK TOCK! TICK TOCK!

2009-11-28T16:44:00.000-08:00

The Countdown to Christmas is gaining on us! In fact, by the time you get to Thanksgiving, if you have not completed the lion's share of your holiday (I mean Christmas...not Thanksgiving), -preparations - you are sorely lagging behind!

The first person who told me in Sept. that they were mostly finished with their Christmas shopping truly amazed, shocked (maybe sickened) me!

Now, everyone seems to be on the fast track and I am sitting in the bleachers hunting for my shoe laces!!

Seriously! I would like to conquer the heartburn from too much turkey and dressing before I attack the major mall groups -- not going to happen!

Even my "non-shopping husband" got up at 3AM on Black Friday and hit the BX. Of course the gift that he had eye-balled for me is something he wanted to have also - so he was deeply inspired to shop.

I did get on line on Black Friday and scored a few of the treasures on my grandchildren's list. I have stewed over a pair of boots for Sawyer and have just arrived at the conclusion HE WON'T CARE ABOUT MISSING BOOTS!He might be a little disappointed about the race car being gone- or the Wiggles DVD missing (They aren't), but boots? Come on!! What does a 2 year old care about boots? Nada! Zip! Zilch! So it is on to the next treasure!

We made some progress today - our tree is up (and decorated). Ed put the lights on the front of the house and decorated the porch pillars. The Titans snowmen are lassoed to the porch swing for the rest of the season. The rest of our "yard art" will follow sometime next week. (weather permitting),

Scott is in "hog heaven" with Christmas finally becoming an acceptable conversation starter. (In July he gets groans and squeals when he starts counting down the days!)

He added a new Christmas treasure to his room - a countdown to Christmas device that will (hopefully) answer the question: "More days until Christmas?" Today we have gone to his room and pointed. (He still asks.)

So bring on the eggnog, haul out the boxes, ribbon and paper you saved from last year! Even if you don't have your shopping done - you can put a nicely wrapped (EMPTY) box under the tree and impress the neighbors! (You might need to fill it by Dec 25th or endure the wrath you will receive from the empty box recipient!)

Christmas is coming! YIPPEE!!! Take time to enjoy the smells, the laughter and the joy of this most special time of year. Take time to share memories of your Christmas' past with your children and grandchildren. Be a part of their memories!! And last of all, please remember those who have lost a part of their joy this year by losing a loved one. They NEED the hugs and smiles too . . now more than ever. God Bless.

2009-10-26T13:35:00.000-07:00

The past two or three weeks have been hellish! For the first time in ten years, Scott had to be hospitalized. Aspiration pneumonia. We admitted him to our local NEW hospital on a Friday afternoon. It is a new hospital - freshly built and lots of nice shiny brochures telling families how wonderfully their sick family member will be treated! BALONEY!

The brochures lie! Big time! I never left his side for two days and two nights! All that great care that we were promised in the shiny handouts never materialized.

Finally, I had enough and threw a hissy fit! (Also known as a Campbell fit or a Williams fit!) We got transfer orders to Vanderbilt Hospital in Nashville....but not before we waited for an ambulance for 10 hours! "I'm sorry" they kept saying - "It shouldn't be much longer" we were told.

Vanderbilt did well and we were able to go home Wed AM. Scott is still struggling with the cough that our primary doc says could be around for 3-4 WEEKS! I want to clear my throat and somehow help him feel better - I have tried and it does not work.

As bad as that experience was, it was nothing compared to the events of last week. Nothing compared to this. I have buried my parents, in laws, watched my husband have a heart attack - grieved over my daughter's pain when her first born was diagnosed with Williams Syndrome... Nothing! Nothing! Compares to the horrors of last Wed!

You see, I had no control over those events. As heart breaking and gut turning as they were to me -- it was all out of my control!

Last week, for the first time in 42 years, I made a mistake with Scott's medications. A horrible mistake! An unforgivable mistake! A mistake that could have killed him! His blood pressure plummeted like a rock and I walked into the dining room only to catch him as he took a "header" - face first to the floor. I caught him in my arms and screamed his name - his beautiful green eyes rolled towards me and I pleaded with him not to leave me! I begged God not to take him from me that day!

I got my doc on the phone - and began to shove salt into Scott. Ed raced home from work and Patrice laid rubber toward the closest Minit Mart to grab some salty food. (we are such a healthy house - I had no potato chips, saltine crackers - NOTHING) That will change!

Dr Bill continued to try to comfort me -- telling me it would be okay - it happens! NO FREAKING WAY! I SCREWED UP - AND SCOTT PAID THE PRICE! NOT FAIR- AND I PROMISE HIM IT WILL NEVER HAPPEN AGAIN!

By God's merciful grace, my sweet boy is still in my life and I will forever be grateful! It brought into focus what is important and what just does not matter any more!

Three weeks ago, Scott's repeated laments of how much longer until Christmas was getting on my last little nerve -- today - it is sweet music to my ears! The knowledge that he will be here for this Christmas is my greatest blessing and I hope I never get over being thankful!

What can YOU do?

2009-10-01T15:09:00.000-07:00

Times they are a changin' --- sometimes not for good - sometimes too fast-- sometimes in a good way.

There is a new posting on YouTube that promotes hiring persons with disabilities. It is short and to the point - and definitely worth the watch!check it out!

Confused? I am!

2009-09-27T12:36:00.000-07:00

I had not opened my blog site in quite some time. Thought it was time for an update! I was really thrown for a loop when I saw my EBAY posting hiding under my last posting! Yup!! It is there peaking through the text and photos of our visit to MA last spring! YIKES! I have tried to delete it, but as you can see, was not successful!

I guess most folks interested enough in my life to be reading this probably knows I post ebay sales for our local ARC... I do not know how this got on this site - and I darn sure do not know how to get it off! Guess we will just have to let it go - hopefully it will not float to the top of this next posting as I have some really cute photos to share!

Dawn and her two little guys arrived on Sept 12th and spent 10 days with us- sort of! Actually, Dawn had to take Sawyer to Louisville to see the Williams Specialist for 2 1/2 days and that left time for Ed and I to spoil Gwen! (Not that it was hard to spoil her - she is such a love bunny!)

We had such a fun time with all of them here. Dawn and I got to go shopping - something I seldom do when she is not here. It is just lonely to shop alone! Ed enjoyed having some "guy time" with his little buddy! Sawyer loves his Grampy and follows him everywhere! He loves to go outside and they spent a lot of park time- swinging and sliding and on the teeter-totter!

Sometimes it is easy to forget that we have this dark cloud hanging over our beloved grandson - he is such a personable little guy - always greets everyone with a smile and a big "hi". Then out of nowhere - comes the "melt-downs" - the sensitivity overloads - you find a name for it and it does not change that Sawyer gets trapped in over the top behaviors - more than temper tantrums - beyond what most people ever have to deal with. My heart breaks for him when it occurs and greater still is my pain for the inconsolable frustration and grief that I see on my daughter's face. This is not the child we planned for, but it is the child we love.

I am so proud of Dawn - her capacity to overcome disappointment and daily stress most of us cannot begin to imagine. I cannot express the gentleness she gives to this struggling little boy and the progress he has made because of the determination of his mother and father. Sawyer has such a long way to go - but he does not go alone- his parents are his biggest fans as he learns new skills and hopefully will mature past these sensitivities issues.

Speaking of new skills, Sawyer saw his Grampy eating apples - Ed loves apples - and wouldn't you know it... Sawyer now loves apples too!

This was Gwen's first visit to TN. She totally won the hearts of all who met her! Oh! Those chubby cheeks!! She gives the best (and wettest) kisses! She is teething and was constantly drooling and wet! Ah yes - very easy to try to spoil!!

Well, I do not know what will happen when I hit publish... will the ebay posting cover up my little angels --- I sure hope not! So, I'm off to rest up for Monday- car shopping- and fodder for another blog! My babies will be back for Christmas this year (Yippee!) - having grown older and bigger! Just so they do not grow too quickly and outgrow the need for a grandma's hugs and kisses! God Bless!

Patience is a virtue BUT...

2009-08-21T19:26:00.000-07:00

When you find out you are going to be a "mother", instead of prenatal vitamins, they should give you "patience" in pill form. Something to get you over the jitters and worries!

Why is it that your child can seem perfectly okay Mon-Thurs, but good grief - Friday at 3PM all Hell can break loose. You KNOW you are not going to catch your doctor before they bolt out the door to begin their carefree weekend.... do docs have traumas in their families... probably... but I just am too frazzled to work up a pity party for anyone else right now!

Scott has battled bronchitis for almost 3 weeks. He started out with a raspy voice - which developed into a cough- not just a hack-hack cough - it is a never ending HACK HACK HACK cough! It makes you want to clear your throat on the off chance it might help him cough it up! (He never does.)

We have exhausted 10 days of Leviquin, 5 days of Zithromax, now after a nerve wracking call to the doc on Friday afternoon, we are starting prednisone, and some type of cough pill. This is being added to the nebulizer treatments we are doing every 4 hours.

Back to the patience thing... I have run out! After almost 42 years of parenting I find it very difficult to sit here and wait for healing. I want to see him relax and I want the sounds of silence. I want the coughing and wheezing to stop! I walk the line between medical science and faith as I poke in a pill and turn on a noisy machine to force medicated mist into
Scott's face, all the while saying a desperate prayer for God to please help Scott. Please strengthen and help him to heal.

I guess I sort of want an old time revival healing where the visiting preacher would bring some ailing person to the front- demand the demons to leave - slap the ailing sinner on the head and send them out the door - healed! yeah!

It is Friday night and you see I am kind of in a hurry for this healing thing to happen as I am under the time gun- Monday - August 24 is Scott's birthday. That is a pretty big deal in this house. We have a party to attend at 11 AM Monday. There is to be pizza and cake! Scott has talked of nothing else for months!!! He just has to get better and this tired (and scared) mom, would prefer "sooner " than "later".

NOT WITH MY CHILD - YOU DON'T!!

2009-07-08T13:20:00.000-07:00

Anyone who is probably reading this entry knows that I am a "special" mom. Not by virtue of being anyone outstanding or noteworthy - but by membership in a society I did not choose. I belong to the motherhood of "special needs" children.

You have to be tough to belong. You have to be willing to "make waves" - make enemies - make people uncomfortable. Many mothers have walked away from this sorority. Leaving behind small lives that need fighters willing to speak up on their behalf. The child is not the biggest loser, however, the disappearing mother is the one who will lose out on a wonderful, loving opportunity.

I have often said -if you do not belong to this club, you do not have a clue about my life and the lives of other parents like me. Oh, you think you do... but it does not happen often.

Today at work, a gentleman, not far from my age, came in our store. I have known him for years. He is pure country and very set in his ways. The term "khaki pants" are not in his vocabulary! He wants Levis please!

This fellow was not alone of course. He attends a day center for DD folks. He was with other participants and several staff. (All women).

Somehow the fact that his staff were women always seems to make it worse. You expect more common sense from a mother figure --- you do not always get it.

Anyway, this gentleman was wearing blue denim pants (remember I said NO KHAKIS), that were 3-4 sizes too big! they were cinched up with a belt that lapped over several inches. That was not the worse part! The pants were urine stained in the front and "poo" stained up the back. (We are not talking Winnie here people!)

I was horrified. I spoke to 2 other special mothers. History has shown that the agency that was charged with caring for this guy did not take constructive criticism well - especially from me!

The bottom line from the 3 special moms was: call the day center and share concerns. I was very disappointed to hear the director say: "They knew about the pants - but he seldom wanted to go out and today was a nice day!" WHAT???"They knew??!!

What they additionally did not know, but I shared with HER, was that our children face many obstacles in life. They are prejudged for so many reasons by people who never take the time to know them. We special moms learn to ignore or confront, depending on your tactic, people who stare, point, snicker and ridicule our innocent children.

Allowing a 60 year old man to go out in the community in soiled denims - making him the fodder for pointing, snickering and nose holding is NEVER ACCEPTABLE and I do not give a tinkers' damn about the kind of day it is! (sorry)

Our fears as moms, is that someday, these same clueless people may be making decisions for our children and I do not want to ever have my son subjected to their callous behavior!

This man may, or may not, have family or friends in this community - it does not matter -- he is to be treated with the dignity I would give anyone. Would I send Scott out with "poopy" pants NO! Would I take myself out with feces stained pants? NO! So why would I approve of this gentleman being paraded around Montgomery County to a bevy of head shakes and nose holding. Shame!

Yes, I complained again! And guess what?? I will complain again and again until they get it! It is a matter of human dignity and respect for one another. This world would be a much nicer place if we could all just "get it!"

From son, to husband to daddy to grampy..

2009-06-20T13:06:00.000-07:00

Ed Wilson has done quite the transformation during his life... Pictures of him from childhood (and stories from his siblings) make him to be the original "Dennis the Menace"! In fact, we even have a picture of him swinging a slingshot!

Later in life, the USAF made a man out of that rebellious boy and he became my husband. (Although he still had a wild streak!)

Then he became a daddy to Scott and later Dawn. His heartstrings really got a tug with each birth! Hard to be "tough" when you are covered in baby slobber!!

There have been lots of stumbles over the past two years with Sawyer... but he is still grampy's boy! One big kid having a ball with a much shorter little guy!

During our last visit to MA to see Dawn and her family, Ed fell in love again- with a sweet little lady named "Gwen". He patted, and hugged and burped this little bundle of joy and felt another heart string "pop".

We question a lot of the decisions we make over the years and second guess our youthful choices. Not this one! If I could go back and do it all over again - knowing what I know now - I would not change a thing.

Father's Day is special because I made that right choice 43 years ago - choosing a life mate is important but choosing the father of your children is a gigantic responsibility! Of all the things I have done - of all the gifts I have given to my children over the years - the choice of their father was the best gift I could ever have given to them! I know without a doubt - I did the right thing!

HAPPY FATHER'S DAY ED!

JOY BEYOND MEASURE!

2009-05-31T07:41:00.000-07:00

Approximately two weeks ago, we were preparing for our trip to MA to visit Dawn and her family. Of course, the big news was that her family has grown and now includes our precious granddaughter, Gwendolyn Haley.

I guess you always wonder how a new family member will fit into your life but a new baby? They just reach out and grab your heart and never let go!

We had not seen Dawn and her family since Christmas 08. Almost 5 months. I think that is the longest we have ever gone without a visit. Skype helps and phone calls and emails - but however much our technology has improved and grown, you just simply cannot email a HUG!

Dawn looked great - a little tired - but healthy and very happy. Who would not be tired with an active 2 year old and a new born? Greg jumps in to help all he can but he has had to return to work. Thankfully, his parents are willing to come and stay with Dawn during the days Greg is gone to help with Sawyer. Because of her C-Section, she cannot lift him and some days, he requires a lot of lifting!

We saw so much growth and change in Sawyer in the 5 months we were apart. Oh! he is still "Mr. Personality" - flirting with anyone who notices his big blue eyes - (and how could anyone NOT notice his eyes?!)

There were many changes in him however. He losing his "babyness". He is more angular - taller -. I would not say he is a "schemer" but he does have a fantastic memory for things you would probably prefer he forget... like where you laid down the remote control - or placed Gwen's "binky". Those things he notices, retains and acts on as soon as your back is turned!

In December, he was only beginning to feed himself - and still ate more soft foods than others. Now, he wants to taste everything he sees others eating - that does not mean he may not scrape it out of his mouth if he decides he does not like it, but he is willing to try. Of course, he is walking- sometimes almost running (reference the "binky" stealing thing). That was not happening in Dec. He is signing and even saying more words. He is alert and sometimes, I swear you can see the gears turning in his brain. (Scary!)

And then there is Gwen! Oh sweet little princess! She has a lot of Sawyer in her. Her deep stares with furrowed brows - just like her brother as a little baby. She loves to be talked to - until she remembers that she could be eating and then she goes into a 4 alarm squeal- that does concern her big brother. The Williams Syndrome does make him sensitive to the crying but he seems to be monitoring the point where he becomes concerned enough to join in her emotional display. It is heart-renching to see him so upset but I know this phase, too, shall pass. I just hate it that Dawn and Greg have to deal with this additional stumbling block.

While we were visiting, we went to a park so Sawyer could get some fun play time. There were swings, slides, playhouses, riding toys etc. So many choices, I think it actually overwhelmed Sawyer. He wanted to do all of it, but making a choice was hard and he did not linger long at any choice.

At one point I looked at Dawn who was sitting at a picnic table with Gwen. There was a sadness in her face as she watched her baby boy wander around the playground with his Daddy - searching for the best activity. I was torn between saying something to her or remaining silent and letting her work through her feelings in her own way. I chose silent and have worried that that may have been wrong. What I wanted to say was: Look at your son today - where he is and how far he has come! He is not sitting in the wood chips any more! He is on his feet and expressing his desires - maybe not the desires we may choose for him-
but the choices he wants to make. He is progressing - in his own Sawyer kind of way.

The experts tell us not to compare our children to their peers - and yet they write hundreds of books telling us what to expect our children to be doing at certain age points. How can we not compare? Why does my neighbors' child color a new coloring book perfectly every week and my baby wants to break or eat the crayons? Is one OCD or the other delayed? Maybe neither.

Sawyer loves cars! Your car, my car - the UPS delivery truck! He does not care - if he can sit in it - (not necessarily go anywhere) - he is a happy little camper!

That is the important thing - I think- Sawyer,for the most part, is a happy, healthy boy! That Damn Williams Syndrome (excuse me!) has clouded up our waters - but we still have a beautiful, loving little guy that is not aware that others may be checking their checklists for his milestones. He knows what he wants - and he is thrilled when he gets it. He has a beautiful, amazing little sister, Gwen, who I am sure will give him a run for his money someday. Hopefully, they will be a team! Supportive and caring for each other. Different - yet identical in their core. Raised by an intelligent, beautiful, passionate mother and father that would move heaven and earth to protect them.

Yes, we spent a week in MA with grandchildren this month, and I would not trade one minute for a month in Hawaii or any other beach front property! (And if you know me, you know that is saying alot!)

Of Peaks and Valleys and the Journey in Between!

2009-05-08T14:31:00.000-07:00

Almost 43 years ago, I married the man of my dreams! Really- if I could have printed out a picture of the man I wanted to marry when I was - oh say -16, it would have looked remarkably similar to Ed Wilson. (The man I married at age 19). Oh what a peak! Think James Dean, think Fonzi - think Brad Pitt - well no- not Brad Pitt- he turned out to be something else.

A little over a year later, we expected a child, and it was a boy and we continued up that mountain toward another peak! We slid a little when Scott came early - but he was a sweetie and we thought we were headed back up the mountain with our little family.

Through many medical turnstiles, we continued to move - then when Scott was about age 3 - a new doctor asked me, "What school is he in?". I muttered he was too young for school to which the doc said (without looking up from the papers he was scribbling on) - "Oh! But mentally retarded children can start at age 3". He went on with his note making and I ceased to breathe!

I screamed and I cried and I ran out of the clinic. Crushed, broken and gasping for air to return to my hurting lungs. Later I realized it was not my lungs that hurt - that was my heart!

It took many years to stabilize - to get beyond the diagnosis. Finally we returned to Scott - not "Scott my mentally retarded son".

Then came a daughter. The fears returned - would we slide down that mountain again? Would the joy again be clouded by disaster? No! God is good and our pilgrimage to the summit continued.

In February of 2007 Ed and I were so blessed to become grandparents to a beautiful grandson, Sawyer. His penetrating stares could melt your heart. His ear piercing screeks could peel wallpaper from the walls! However, he was ours and love does not begin to touch the depth of the feelings we all had for that little guy.

Sawyer began with an early arrival and had some problems along the way. Hernia, reflux - annoying but not too threatening. Then the day that made our world shake again! At his first annual exam, the doctors began to suspect something far more sinister - Williams Syndrome. What? Never had heard of it! Did not WANT to hear of it. Ed and I sat in the early morning hours crying for what "might" be and holding on to each other for support. It took weeks to get the definitive answer from our daughter. Williams Syndrome.

For probably a period of several months, this genetic deletion reigned over all our lives. It was like a cloud over Sawyer. We saw his magical smile and heard his infectous laugh and yet it was there - "Williams Syndrome".

Gradually, He has come out from under that cloud. He has become Sawyer again. He does Sawyer-like things - not because he has Williams but because he is just Sawyer. To those who might misunderstand and think - Oh! He outgrew it or some such transaction - no! He still has the deletion, but WE have outgrown it. His parents have done a awesome job of giving him every opportunity to surge forward and learn. Pushy - maybe, but he will benefit from that. He is learning daily and becoming even more our Sawyer!

Growing in so many ways is a good thing as he is now BIG BROTHER SAWYER!

On May 1st, Sawyer "welcomed" his little sister, Gwendolyn Haley! Oh! the joy!

We are out of the deep valley where we met "Williams Syndrome" and we are back on that mountain top! Deeply in love with that little girl with the piercing eyes! We can't wait to hold her and smell her and feel the warmth of that sweet little jewel!

Would we appreciate our "peaks" without the valleys? I would be willing to try . . .

Perhaps the weakest moments in our climb make us appreciate the sweetness at the summit. This last week has been pretty darn sweet!

Meet My Special Olympian !!

2009-03-22T11:30:00.000-07:00

The weather says it is Spring and with Spring, comes SPECIAL OLYMPICS!

For many years, our son, Scott, has been a Special Olympian. He does not "excell" in athletics but for some reason, he gets really excited about "Special Olympics".

He partakes in track and field in the Spring and Bowling in the fall... which brings me to my latest rant.

We had a new milestone this past week. Our new President, for whom I have the highest regard, was the first sitting president to appear on a late night television show. (Jay Leno). (I thought Bill Clinton was actually on "Arsenio Hall" -- remember him? But maybe not.)

I taped Leno and thought our Pres did very well. Then the big bruhaha came about.

It seems that part of the show was edited out before broadcast. However, not before it was broadcast around the world.

For those who may not have heard the ruckus, Jay Leno asked President O'Bama if they were going to replace the White House bowling alley with a basketball court. This, of course, refers to Barack's lack luster performance during the campaign when he attempted to bowl with some potential voters and did not do very well.

In his response to Leno, Pres. OBama said he was improving but said he still bowled like a "Special Olympian".

Am I offended? No! I think our President has a good heart and certainly did not mean to offend or insult a huge population of people who give 200% in their athletic endeavors.

However, I feel this opens a great opportunity for people to become educated into our world. My friend's daughter went to Minnesota (I think it was MN) this Feb to participate in the WORLD Special Olympic Games. She is a speed skater and she gives it all she has! Trust me - most average folks would not want to compete with Michelle!

The part of me that finds this whole episode sad is that the audience laughed so quickly. They had no problems finding humor in the abilities (or preconcieved lack thereof) in the special olympian. THAT is sad. We, as a people, are too comfortable in allowing weaker folkes to be joked about in our presence. Better them than us I supposed.

In the coming monthes, you can believe Special Olympics will get some positive air time. That is good. Personally, I would like to see ESPN donate some time for the national and world games. Athletes like Michelle earned her spot in the limelight representing our country in the world games - yet if you want to see her efforts you have to watch home video!

And so it is Spring - time to get out the softball to practice Scott's throw - and stop watch to time his "speed" walking. Besides as Scott can tell you- after the games - we go to Shoney's for HOT FUDGE CAKE! That is my contribution to the sports world!

WHAT WE OWE OUR CHILDREN...

2009-02-01T13:02:00.000-08:00

Believe it or not, we are into the second month of this new year and I am still finding left over bits of Christmas 2008. I tried to scale back on the trinkets I put out last year - mostly to prevent trauma with Sawyer - but I still have way too much to put away.

Besides, I am sure much of what was given has already been forgotten. Which brings me to this.. "What do we really OWE our children?"

We owe them the right to dream and to chase those dreams. The words "You can't do that" should never be uttered in relation to the goals of our children.

We owe them the best education - not the best available in our local area - but the BEST(!) period! We should have unwavering determination to stand "toe to toe" with teachers, principals, guidance counselors and specialists of all types and demand what is best for our child. No one knows your child better than you do and their future is dependent on your strength as an advocate.

We owe our child our support in becoming independent and a part of the outside world. That means insuring they are welcomed in "scouting". churches (!), community center events etc. Do not begin a separate event for my child, let him be a part of the big picture. Welcome him into YOUR group and watch him grow!

Probably the hardest thing we "owe" our children is to let them fail, to get hurt and to question their dreams. Isn't that what we all do from time to time? It is part of life and yet it breaks our hearts to see our children face disappointment.

We will spend money we cannot afford, lose sleep with worry to finish that science project for the child who did not plan ahead, and consider bribing the parents of the child who excluded ours from the big birthday party on Saturday.

Life hurts! That is one lesson we do not want our children to learn - but they must. Still, we can fight to give them an even playing field. Give them the opportunities and skills to do their very best and then stand on the sidelines and cheer!

COINCIDENCE OR DIVINE GUIDANCE?

2009-01-27T06:56:00.000-08:00

Things happen. We all know that. Why do they happen? That is a question we all ask - usually we say -- "why does this always happen to me?" We tend to question the bad rather than the good. The consequences are equally amazing - but we do not question when we are wonderfully blessed - only when our worlds are shaken to the core.

My world got one of those shakes this morning.

To bring you up to date - my son, Scott, has had an abrasion on the bridge of his nose since mid-October. It was caused by the mask of his C-Pap machine that he uses for sleep apnea. It has occurred before- and it healed. This time it was being very stubborn and our physician referred him to a dermatologist.

The doc briefly looked at his nose and said it would heal - is healing - use antibiotic cream - leave it alone.

Okay. Then he wanted to check out the lesion on his head... The doc made reference to the referral of our primary care doc and I was confused. Nothing had been said about checking out his scalp - and our doc does not send us off on blind referrals.

Long story short - he was in the wrong room with the wrong patient! BUT- Scott did have a small lesion on his scalp - which the doc wanted to biopsy---. I was annoyed - sloppy office management that he was talking to the wrong patient. The biopsy was done however.

Flash forward to this morning. We are in the midst of an ice storm. Schools closed - power lines are going down (not before I finish this I hope!) Then I get the phone call.

CANCER

A word not used casually. A word not used with my child. (Okay he will be 42 in August, but he is my baby).

I listened to big words - Latin words that held nothing but fear and nausea in the pit of my stomach. I remember "Premedication", local anesthesia, blood, tension---. Fear. Denial. No!

I asked if I could stay with him through procedure. That is the only way he will tolerate it awake. Permission granted.

Date for procedure has not been set. - It seems the derm doc is national guard and will gone from March-July for duty with our troops. They will try to get Scott in before he leaves.

So you be the judge - coincidence or Divine intervention - Scott gets a sore that does not heal- sent to specialist who walks in the wrong room and examines him for something we did not know he had -because the doc thought he was looking at Mr Cook. Initially, I was furious. Now, humbled and fearful - I am thankful for that mistake.

I know which answer I pick - I know who has shielded my family and given them the strength they need through dark days.

I ask for your prayers for Scott in the upcoming days. He has already picked up on my anxiety. So I have to go into the normal "happy" me. Not easy at this point. Unasked prayers have brought him to this "solution" and prayers will bring us all through it!

HO-HO-HOLIDAY!

2009-01-04T15:32:00.000-08:00

Christmas by its very definition is a time of birth, hope and good tidings for all!

I hope most people had a day of love - family and good memories. I do not say ALL people for I know that is not possible. Unfortunately, Christmas is a sad, depressing time for many people. Suicides climb and hospitals explode with people who use them for a place of refuge. Maybe we can all remember to be a little more caring of others next year - but probably not. We get way too wrapped up in our own little worlds to remember that no matter how hectic our lives are - how over come we are with all the little details we must finish before December 25th, in general, we are pretty darned blessed! At least I am !!

I had wonderful parents and extended family. Out of all the losers in the world, I managed to meet and marry a real winner. My son is my soul, my gauge as to the importance of life's little warts in comparison to what is really important.

My daughter is my guiding light! My pride and my spirit! She is an inspiration to me every day. I do not know how I was so lucky to have such a blessing in my life - and I do not take it for granted for one minute!

That brings me to my precious little Sawyer! Our little human dynamo! He is love personified!

We were thrilled to have Dawn and Greg (another blessing in our lives) come be with us for a week during Christmas. There was lots of eating, talking, visiting - all the things that make Christmas special.

Sawyer was pretty good about not destroying the tree - of course Grampy had nailed it to the floor...

After all the problems Sawyer has had with eating- reflux etc. he seems to have mastered the feat. He eats constantly! Pancakes, pizza, biscuits, potato soup, gold fish, chocolate- anything chocolate! ( I think he got that from me!)

I have bumps in the Christmas season - mostly people I miss from holidays past. I try to remember that those were good times I can't bring back and then concentrate on the good things I do have right now! I would hate to cloud over the wonderful memories we are creating now with dark thoughts of missing what I used to have. How can you not love a sloppy hug from a 2 foot tall dynamo who fell in love with Hallmark singing snowmen?

Yes Christmas 2008 was good! It was exhausting at times but in such a good way! Next year our joy will grow as we get to "shop PINK" for the little girl that will join our family in April. I get to shop for fancy dresses and baby dolls and of course, balls! Sawyer loves balls!

Just think only 355 days to go-- and we can do it all over again!! God Bless!

Early Christmas!

2008-12-06T15:41:00.000-08:00

Many years ago, a baby was born into this world and mankind has never been the same. Throughout scriptures, children were held in reverance. Babies are pure and places were we historically place our faith and hopes and dreams.

Last September, Dawn and Greg came home for a short visit and to take Sawyer to Louisville for a consultation with a WS specialist. Before Greg left to return to MA, they shared with us that another baby was coming into our lives. A blessing, a thrill, a fear.

Because of tests that would be performed in a few weeks, they asked us to keep the announcement of our newest family dividend to ourself until everything was stable and the pressure of waiting for confirmation of this precious baby's good health was certain.

I can proudly say we did manage to hold it in for the 2+ months it took for everything to be tested and evaluated and declared safe and healthy and A GIRL!!

Yes folkes, it is true my precious little girl is expecting her own little girl in late April! Not quite so sure how thrilled Sawyer is going to be about this addition to his life. After all, he is the center of the universe . . . sharing "Mom" might be an issue, but I am sure she will handle it with the calm and capable way she has dealt with all the situations she has faced in her life.

Daughters! What can I say about daughters? They are different . . . they are a challenge . . .they are precious and sweet and demanding and I highly recommend everyone have one!

My husband wanted a daughter so badly when I was pregnant with our second child. To this day, he softens and nearly crumbles just to hear her name. Oh he disappeared from view when she had a disappointment as a teenager - but later would reappear and ask "Is she okay?" He would tell her to "toughen up" but would walk through fire for his little girl. He beamed with pride when she won a fishing derby at age 5 and brashly boasted of her bike riding and roller skating skills. I may have given birth to her, but she was always "Daddy's girl"

So we will wait this next 4+ months until this new little lady joins our family. I know it will not be easy for Dawn to cope with a new born and Sawyer with all his daily needs. Some may say it is not normal. But what is normal? Every family is different - each with their own personal challenges and triumphs. I think sometimes that we all watched too many episodes of the "Waltons" - where a housefull of kids all loved one another and always got along. Secretly I think Jim Bob did not like John Boy and the little one was a spoiled brat!

Yes, the world was altered by the birth of a baby - and our family will be blessed by the birth of another!

SHOVELING COAL!

2008-11-20T05:25:00.000-08:00

Beware! I am about to vent! My blessed Aunt Mary used to say our special children are sent to earth, not as punishment for them - as some may believe - but as a test for those of us who mistreat them.

With that in mind I begin.

About 2 years ago we had a regular customer in our thrift store. She was always in a hurry. Finally she told us she had an adult son, about 23 years old who was self abusive- C/P, mentally retarded - several problems. The only way she could leave her home was if her younger daughter "David-sat" with him while she dashed to the store.

On a later visit, she told us her daughter was refusing to stay with David any more - told her to get outside help. "Mom" was beside herself with worry. How was she going to go get groceries, pay bills, see the doctor for herself?

When we inquired about the father - we knew they were military - she said the father, although in the home, did not interact with David. He would not even speak to him at the dinner table. Totally ignored him.

Cutting to the chase, I connected her with DMRS who provides services for disabled in Tennessee. I suppose God was watching over David, as they (DMRS) had a representative in her home within 1 week (unheard of in TN!), and within 60 days David was placed in supported living. He was in a private home with another young man and 24 hour care! Mom was thrilled and I can only imagine the father did cartwheels on the front lawn.

Fast fore ward 2 years. David is doing well in the assisted living home. He has greatly reduced the self abuse problem and is actually out of his wheelchair and walking with the aid of a gait belt.

For those who are not military - you need to be aware that if a military person -active or retired - has a child who is dependent on them for care because of a disability that begins before age 18- that child is entitled to full benefits (health care, BX-Commissary etc) for their entire life. This entitlement is contingent on the sponsor signed the application for an ID card.A very simple process that is repeated every 4-6 years.(Did I mentioned this is at NO COST to the family? Free health care- doctors, tests, prescriptions, hospitalizations etc -FREE!)

I learned last night from David's caregiver that "Pop" is refusing to sign. That means David's health care is at an end. Finished. Over. No more.

Oh he is applying for TnCare- (medicaid) - but his primary care is done. Dad has washed his hands of his son and cartwheeled off into the sunset!

I would love to be able to afford a billboard - maybe one of these new fancy electronic ones that people are attracted to - and put this JERK'S face on it with the subtitle 'DEAD BEAT DAD DESERTS HANDICAPPED SON!

I have called The ARC of TN to see if the state can somehow pressure Dad to repay the state for David's care if he does not re-instate the insurance, but they are not sure and are digging into the legalities.

My second choice is to gather the posse and go beat the thunder out of "pop".

It just makes me think that Aunt Mary is right... there is a special section of hell reserved for those who mistreat the Davids' of the world. Shame on them!

It's enough to give you high b/p !!

2008-10-29T13:29:00.001-07:00

Why do we have health insurance? Okay - easy enough - to pay our bills if we get sick! Now, part two: what gives us the biggest headache? Answer: INSURANCE COMPANIES!

Our family is blessed to have some of the best insurance available, (other than being totally rich and not worrying about medical bills!). We have federal Blue Cross and Tricare standard. Pretty much they take care of anything. And yet...

Yesterday we went to Nashville to see Dr. Haynes who is Scott's Respiratory Specialist and takes care of his Sleep Apnea care. We have been with him 21 years and see him once a year. Scott has had some problems over the past couple years with skin breakdown over the bridge of his nose that is aggravated by the nasal mask he uses with the cpap. We have tried several devices and eventually they all blister his nose.

This year, Dr Haynes had a new nasal cannula that does not sit on the bridge of the nose! Hurrah and Praise the Lord! He wrote a script for it and told me to stop on the way home and pick one up at the usual place. Ahhhhhhh! That it were that easy!

I called the medical supply company from the doc's office - "Just in case" they needed some info from the medical team. Oh No! They had their own agenda and it did not involve Scott getting a mask anytime soon!

I was instructed that we would have to come in for a visit with their resp. therapist and she was not available for several days. Now, come on! This is not rocket science! He has had the machine and slept with some type or the other for 21 years! Just give me the new mask and let us get on our way!

You know that is not going to happen. Finally I called the company yesterday and asked to speak to the very busy resp Therapist - I wanted to confirm that they did, indeed, HAVE the type of c-pap mask we needed in stock. I did not want to get there and find out it was out of stock and I would get it in a week to 10 days. (Why do they always say "a week to 10 days - why not 11 days or 5 days?) I explained our situation - we are not new patients - we know how to operate the system - just give me the new mask. She agreed to speed up the process by "working us in" today.

Okay- I left work early and met Scott and Patrice (his PA) at Apria Healthcare. We went in sat for about 5 minutes when they called us in the office. She handed me a plastic bag with the mask and tubing and said, "Any questions?". NOPE! We left.

Those of us who deal with the medical world know what it was about- not Scott's health care. It was about getting additional money for the medical supply company by claiming he was seen by the "specialist". Bull Hockey!

On a similar note, Dawn and Greg are battling their insurance over Sawyer's physical therapist. It seems the insurance world was concerned when Sawyer did not walk at 15 months but it is ho-hum at 20 months and they do not want to pay. HELLLLLOOOOO! Is it not a more flagrant problem at 20 months when you are behind your milestone? This little guy is ready to cut loose and walk - I know he is - he is teasing us just like he did with his rocking on his knees for months before he actually took off crawling. But until he is up on his feet- giving us a run for our money - come on insurance companies - do the right thing! Throw away the one line answers you give your call staff to rattle back to insurees and use some common sense!

I hope my B/C continues to pay for my Atenolol so the elevation they cause in my B/P can be controlled!

It's enough to give you high b/p !!

2008-10-29T13:29:00.000-07:00

SWINGIN' - YES! WE'RE SWINGIN'

2008-09-23T13:20:00.000-07:00

It has been a busy few days. Dawn and Sawyer came for a visit and Greg joined in for a few days. Even in the short time between our visit there in mid-July and their arrival here, I can see changes in Sawyer. Of course we cheer every little progress! Sometimes, he gives us this "Why are you so impressed with THAT" look. Let's face it - he has us wrapped around his little finger and that is perfectly okay with us!

Dawn, Greg and Sawyer went to Louisville to meet with a doctor there that is doing research in Williams Syndrome. Sawyer had two days of tests and talks. I think they got some good tips from the doctor and Sawyer got to show off for more people. They will return periodically to meet with others from other states who are part of this research project.

While here, we all got to attend a small family wedding. Sawyer did very well during the wedding service. He played with Grampy and ate graham bears and it was a simple service.

Then we went into the reception. At first we blamed it on the sugary punch - but now we are not so sure... Sawyer fired up and really "talked up a storm". It was so funny! He was sitting in a high chair at the end of our table and began to jabber away. Then he got louder and his little face got flushed. Then he continued to rant and wave his arms. Someone said he looked like he was leading a revival - another said they thought he was Pentecostal! At any rate he had a fun time and managed to score several helpings of cake!

On Sunday, Hurricane Ike scurried through Tennessee. Actually, it was more like a huge wind gust that flew through. It was strong enough though, that it knocked down trees, and power lines. We were without power from 10 AM- 7PM. I found that to be annoying until I learned that people in KY are still without power in some places - so I need to hush and count my blessings!

As a result of the power outage, we did decided to find somewhere cool to eat where they might have "soft" food for Sawyer. We decided that Shoneys was the closest and best bet for Sawyer. Again at the end of the table, he began his speeches to the masses. Getting louder and louder, he voiced his joy at being at the head of the table. I do not think he annoyed anyone (TOUGH! if he did! I have put up with other people's unruly kids for years! It is MY TURN!)

No seriously, he was so cute with his smiley face and big blue eyes - trying so hard to tell everyone his stories! Jabber Jabber! We loved it!

Probably one of Sawyer's favorite things is: swinging! He loves it! The higher the better! We walked over to the playground nearby and he had the swings all to himself. We attempted to switch to the slide after about 15 minutes but he was not about to give up his seat! He wanted to fly on his swing! I told Dawn she will have to get him a swing of his own next summer. They have one in the basement - and he can swing all year and that is great for him!

Ed and I, both, were impressed with Sawyer's logic skills and memory. Boy! If he finds something he likes - he knows where to go look for it again later. Especially if he is told "No!" He is getting great at climbing and reaching and especially melting our hearts!

Sometimes, I think we get so wrapped up with this "Williams Syndrome" thing, we miss Sawyer! We connect everything with the Williams and do not give this little guy enough credit for just being a cute little guy with preferences of his own. Maybe this or that behavior is not "The Williams", maybe it is just Sawyer being Sawyer.

In the field of MR, there is a self advocacy group called :People First. They subscribe to the philosophy that you should never put a label before a person. Thus not a mentally retarded girl, rather a girl with m/r. It is just a small part of the person and should not be given that much control over their lives. I agree. I do not want to put any obstacles in front of this little guy. He will do what he can do - to the very best of his ability. We can ask no more of anyone. I think he may surprise us big time over the next few years. In the meantime, I am enjoying every minute of this grand adventure called Sawyer Matthew Low!

TRY, TRY, TRY AGAIN!

2008-09-04T14:17:00.000-07:00

There is a marquee in front of our church that usually has some cutsie slogan on it. Lots of churches do that now. I generally read them as I fly by daily but do not give them much thought.

This week I read the sign, mulled it over and have given it much thought over the daily drive-bys.

The sign says: "Do or not do - there is no "try" "

Obviously, the person who thought up this brain child has not walked in the shoes of a mother with a special needs child -- or any child for that matter.

I understand the thought process in relation to Christianity or any religion for that matter. You accept it - or you don't. There is no half way in faith. (I suppose some lame faith would say:"do what feels good - anything is okay if you do it in a good way - but most organized churches want commitment!)

I have been saying "TRY" for 41 years. "Try to eat the green beans", "Try to zip your coat", "Try to swim across the pool". Lots of trying with a child.

When you have a different path, a "special" path, you have to do a lot of trying and then turn it over to faith. I, in no way, think I can get through life on my own trying. When things get darkest and fear over-flows my heart - I have to turn it over to faith. I simply cannot put my fears into the hands of man. God can handle anything - beyond my wildest imagination. Man has limits. Sometimes we need to reach them so we can appreciate the limitless powers of God.

Years ago, about 38 years ago, Scott was in the hospital with pneumonia. He slipped into a coma and the doctors told me to talk to him and touch him - they did not know why this happened - and seemed helpless to reverse it. Several family members hurried to the hospital to support us and we gather around the small crib as my uncle cradled Scott's tiny hand and prayed and begged God to be merciful and touch that tiny child. Slowly, Scott squeezed my hand and I yelled for the doctors. They came into that room and evaluated Scott and told me he was out of the coma. I cried, of course, and thanked them profusely. They both told me that it was not them I needed to thank - they had not done anything to reverse the coma. There was another Physician in the room.

And so, I will keep trying - in all areas I can, but I will also keep "doing" in the faith arena.

There are three stages of God:
Impossible
Difficult
DONE!

Good news on the home front: Sawyer's allergy tests came back negative! He can have peanuts and hopefully avoid allergy shots. Also his calcium level was in the normal range! YEAH!

Sawyer will be coming to Tennessee next week for a few days visit - then Greg will join Dawn here and they will drive to Louisville KY to see a developmental specialist who is doing a research study about Williams Syndrome children. Can't wait to see Dawn and Sawyer (and of course Greg too!). It is cute to hear Scott when someone asks about Dawn - he will add "And Greg". He has bonded to Greg and that is wonderful to see! We all need people to love in our lives - I am very thankful for the blessings in mine!

HAPPY 41ST BIRTHDAY SCOTT!

2008-08-24T13:46:00.001-07:00

There are some things that never change - the sun will rise in the East - and my son will want "Batman" for his birthday. I must make a mental note to do something different next year - I am tired of Batman!

I tried to change this year- I tried for weeks to think of a new venue - but Clarksville is limited in the places you can take a group out for lunch - let alone fine a fun day. Some one suggested "Chucky Cheese"! Not only did I cry "NO!" --- I believe it was "Hell NO!" (sorry)

I did the Chucky Cheese thing when my kids were young. We did not have one close to our home so we would drive 1- 1 1/2 hours to Concord Calif to the nearest Chuckie Cheese. At least they had the animated shows - which were kind of cool in a restaurant that served greasy pizza and luke warm soda. The best part was when my friend's son, John, who was about 7 years old and had Downs Syndrome, climbed into the tunnel and froze about half way. A line of kids were stuck behind him - and they began to wail! So "Daddy" John had to climb into the tunnel, where he pleaded, bribed, pulled and pushed to get his son to move on. Young John was having none of it - His mom, Joyce, (who was British) stood at the opening and would say in her clipped British accent - "John, come out now - what seems to be the problem?" "Daddy" John, who was now sweating and embarrassed and tired of the whole experience, bellowed back: "Your son won't move! - THAT"s the problem!!" Of course we had boo-hooing kids behind John who wanted out and because I was a casual observer - and my children were not actually contributing to this mess- I found it extremely funny! We did "uncork" John eventually,(both of them), and left shortly after that. At one point he told his mom - "Just one more trip down the tunnel"! "NO!" shouted both parents and we made a hasty retreat out the door.

Scott has had 3 birthday parties at Cici's Pizza Restaurant here in Clarksville. We invite a few of his friends and their staff to join us! They get salad and pizza and all the beverages they can muster. They sing "Happy Birthday " and Scott is in heaven. Lately, he thinks if he can get lunch at Cici's, he gets to have a birthday party. I finally had to tell his PA to avoid Cici's for a while until he gets over the Birthday thing. Unfortunately, he will "move on" to Christmas. I think the best part of Cici's is their staff. We are seated anywhere we want to sit. That may not seem special to those who have never approached a restaurant at noon - with a bevy of wheelchairs, crutches and folks with a variety of disabilites. We sat in the middle of a room of average folks and the staff at Cici's were great! They never rolled their eyes or acted upset at dropped food or loud voices! In fact, they joined in for the singing of Happy Birthday and encouraged the other "eaters" to do so too! Now, THAT is "inclusion" in its purest form!

One of Scott's greatest thrills for his birthday is the arrival of special guests! We made the invitations on Shutterfly and sent them out. I asked "who" he wanted to invite and his first answer was "Carol". Carol was his helper when he was in the workshop. They were buddies for several years. She quit her job for another better paying one but has always stayed in touch with Scott. When Scott had his open heart surgery, she came to Nashville and sat with our family in the waiting room. She was one of the first people to see him in the CCU. He loves Carol.

I was not sure if Carol could come this year. She works for Metalpha (Bridgestone), and I was not sure her schedule would allow it. She switched schedules and pulled an over night shift so she could be there. Bless her heart, she was so tired and yet she came. When Scott saw her walking across the parking lot into the restaurant, he literally lit up from inside. When she did get in, he stood up and ran to her - saying "Carol! Carol!" It was hugs all around.

I am glad his current PA has a big heart and understands that Scott does not love Carol more than he loves her. It is just that when he "loves", he loves with all his heart. Sometimes, it is as if his body is not big enough to hold all the love he has for persons who have garnered a special place in his life.

As the parent of a special child, it refreshes my soul to see special people like Patrice (Scott's current PA), and Carol, who work in a field that is grossly underpaid and get little respect for the hard work they assume when they work with individuals with intellectual disabilities (M/R). When you have a child who may not be able to tell you if something bad happened to them, or if a staff person may be less than kind, it really restores your faith in mankind to find a Carol or Patrice in your world.

So Scott had another great birthday! He got to eat Pizza, (Macaroni & Cheese Pizza at that!), cokes and birthday cake! He received many great gifts and saw lots of his family and friends.

41 years ago, Scott came into my world in a scary, unexpected way. He was not due until Oct 15th. I was young, inexperienced and alone at the time. (Ed was on deployment and was sitting at Midway Island when Scott was born.) A tiny 3 lb 2 1/2 oz little guy who fought hard to stay with us and I am so thankful he did.

Happy Birthday Scott - I do love you - everyday - but especially today!

2008-08-09T17:51:00.000-07:00

In the coming days, you will probably hear much about a new movie that will be put into general release on 13 August. The movie is already advertising on TV. It is titled, "Tropic Thunder". With Ben Stiller, Jack Black etc., it is probably going to be a "teeny bopper" hit.

You may also see a protest of special significance outside of theaters showing this film. You see, this film is highly offensive to persons with disabilities . . . especially those with mental retardation or similar disabilities.

"Simple Jack" is featured as a film-within-the film, with Ben Stiller portraying a "retard" with a classic institutional bowl haircut and bad teeth. The film's promotional poster bears the subtitle "Once Upon a Time there was a Retard".

The scary thing is, the individuals to whom this film will be targeted, are our young generation who we desperately hope will be more accepting and knowledgeable about their peers who may appear or act differently. It is so very WRONG to, in any way, put forth the idea that it is socially acceptable or FUNNY to ridicule a person because they may not be as quick or able as the student next to them on the bus.

As the mother of a nearly 41 year old son with mental retardation, I have a problem with the word "Retard". Not the clinical diagnosis "Mental retardation" - but when I hear an otherwise intelligent, sensitive person use the word "Retard" as a noun - to mean - "God! You are so stupid!" - I cringe inside. It is degrading, insulting and very insensitive.

Most people today are more accepting of persons with disabilities - most people realize that all children deserve an education to the best of their abilities - most people would not think of denying another person medical care to insure they are healthy, protected and free from pain.

It has not always been so. I think of my friend, Katherine Rudolph who had a son in the early 1950s with Downs Syndrome. College educated, she knew nothing about Downs. She drove from Tennessee to Boston to see a specialist in DS. That "doctor" told her there was no hope - to put him away in an institution and "not get attached". Miss Katie was indignant! What? Not love and care for her child? Incredulous! She informed that doctor in Boston it was much to late for that as she had loved that child from the hour he was conceived - and would continue to love him until God took him home.

She returned to Tennessee where she fought for education (PL 94-142)and Social Security Benefits to include medical care for persons with special needs. Her last words to me was "The job is not done - never, never give up!"

This movie is a huge backstep for social awareness in this country. Produced by Dreamworks and distributed by Paramount - this film would never have been considered if it defamed any other social minority. The thought that the decision makers in those companies thought this was an acceptable concept to promote to our youth is pathetic. Yes, I KNOW this is a movie - , but how often do young people leave a theater and quote the "tag lines" for months -- "E.T. Phone Home" - (remember that one?)

Unfortunately,we are all influenced by the media - some more than others. It is sad to me that the actors involved felt this was okay to do - that it was funny.

When my child becomes the target of someone who has seen this film and they decide to make him the object of the "retard" jokes in this movie- I will fail to see the humor. I may walk the picket line outside our local theater - I do not know yet - but letters will be written by me- and hopefully by you - alerting the world that this negative image of persons with disabilities is not acceptable and will not be tolerated!

EBAY-MANIA

2008-08-04T10:30:00.000-07:00

Some people will buy -- or sell anything! We try to keep the prices low in our little charity thrift store. We are small and do not have a lot of storage space. Also, people expect low prices in thrift stores. Unless you are shopping in "Goodwill Stores" where the prices are God-Awful high!(But that is a story for another day!)

Also, there are certain items we just do not feel comfortable selling in the store - machine guns, do it yourself lobotomy kits ... no, no, just kidding. No guns, no medical stuff. However, we do sometimes get racy underwear etc that we would rather not see the local "cross dressers" trying on! For real!

We do put items on Ebay that we know will sell for more money than we can ask in our store. We are the grateful recipients of home improvement supplies from the 2 major home improvement stores here in town. While we do mark the items down to approximately 1/3 of their original cost, customers still groan and tell us "we are a thrift store and the price is high!"

To eliminate that, we sometimes revert to EBAY. This past week, I sold an old, uncared for trumpet -- I was thrilled to get over $600 for it!Woo-Hoo! In our store, we could not have gotten over $50.

I am beginning to learn the hot brand names as well, FUBU, JUICY, SEAN JOHN etc.

Back to the cross dressing thing... I have learned that if we put sexy lingerie - especially larger sizes - on EBAY- some guy will buy it! Naive me !! I assumed at first that all these guys were surprizing their wives with a special gift from Victoria Secret! Well, I have been enlightened! I was wrong!

One of our local friends told me that the guys who bought those clothes were probably gay or cross dressers. (Buy online - no questions, no stares, no disapproving grunts!)Okay - that's cool with me - as long as their payment is good and I do not have to watch - they can wear all the red lace teddies they want!

Not sure how long this EBAY thing will last - they have become very un-friendly to sellers. Feedback is a big deal - and now buyers can leave negative feedback - but sellers can't. How fair is that? People jump on Ebay - bid and then disappear into the night. We always try to be overly honest about the condition of an item - lots of pictures. We pack items very carefully and still you can be burned by a person who spent too much money for something they probably did not need.

Enough ranting! We just got home from the dentist. Ed and I finished last week with our semi-annual checkups and today was Scott's turn...Oh how I dread that.

First of all, I hate dentists. (No offense Dr Lynn & Dr Andrew) - I had very bad experiences as a child and now I shake like a leave in a hurricane to go into a dentist office.

Armed with promises of bookstores and lunch out- we headed out. I had gotten about 1 mile from home when I realized to my horror that we had not brushed teeth!Nooooooo! Not acceptable! Pulled U-Turn in the middle of 41 A and back to the house we ran. Raced through the front door- ran to bathroom and got the brushing accomplished and set out again for a 10:15 appointment.

Scott did really well with the cleaning exam with a few verbal reminders to open wide- and "Open really wide like a bookstore mouth!" Well, that confuses the doc, but bribery is not beyond my character.

My fears were realized when they found one filling was loose and will have to be replaced - and another tooth was chipped and will have to be ground down a little to make it smooth.

FLOP SWEAT - get the picture? It is bad enough when it is me - but I hate for it to be Scottie! I will go with him and stand next to him and give verbal cues as what he needs to do. He will come out of the dental chair all patched up and happy to leave - and I will be soaked to the skin in nervous "flop sweat!" I will feel every prick and every grind of the equipment. Every muscle in me will be in spasm until he is done for another 6 months.

Scott may forget the experience but I will pile it up on my dental stack of memories to add to my terror the next time I go in to see the dentist.

With all of Scott's medical problems - and the myriad of medications he must take, there is not a lot they can do - for him - maybe they can slip ME something for the anxiety!

Heart problems!

2008-07-24T15:16:00.001-07:00

Most people know the song by Tony Bennett - "I Left My Heart in San Francisco" - well, San Francisco is a beautiful city - I have been there many times. However, I left my heart in Mansfield MA. Actually it was stolen by a very sly, con artist. He stands a little over 2 foot tall - blond hair, blue eyes and a killer smile. His name is Sawyer Matthew Low and he is our grandson.

He started out innocent enough. Giving us an evaluating look - "I have seen you people before - hmmm - easy targets as I remember!" He followed this with bigger smiles - slobbery kisses - and then heart breaking hugs. Whatever his style - he is good!

Ed, Scott and I flew into Providence RI on 16 July. Dawn, Greg and Sawyer met us at the airport and whisked us off to Mansfield. Much better accommodations at the hotel Low than any three star resort!

Sawyer has a bigger schedule than most Hollywood socialites! He has speech therapy, feeding therapy, PT,early intervention - play groups etc. He is growing and I think he is gaining weight - (Just try holding him for a long period and you realize he may look petite, but he is solid as a rock!)

Crawling has been long mastered and while he was just beginning to "pull up" when he was with us in TN in April, he springs up like a jack in the box now! Nothing and I mean nothing is safe at table height when Sawyer is in the room. He has a very good memory too. He knows when he sees items of interest (His Grandpa Ed's eyeglasses for example) on a table and he will check periodically to see if they have reappeared unguarded for him to explore.

He loves the computer printer and just KNOWS anything shooting out of that machine has to be for him. Thankfully his mommy is quick at retrieving the printed documents.

One of Sawyer's biggest challenges is gaining weight. He eats well, but his grandpa Ed calls him a "hummingbird" because he is never still! Once his eyes open, his body goes into high gear. He is not walking yet - but he crawls, rolls, pulls up and just is a total moving machine!

We had such a pleasant visit and the weather could not have been better - well a few degrees cooler would have been nice - but no rain and being from TN, we know a summer day means HOT!

Seeing Dawn and Greg with Sawyer gives us hope for his future. As the mother of a child with m/r and the local president of the ARC here, I have an opportunity to meet with parents frequently who have done very little to prepare their child for the future. Many parents are agreeable to sitting back and waiting for others to plan for their child or specifically tell them what to do. Often it does not happen. More often the guidance is incomplete or just plain wrong! Raising a special needs child is not for sissies! You have to forget all the manners and niceties we have been told to observe by our parents. You have to be proactive - and sometimes downright rude! No one and I mean no one will fight for your child like you will!

Dawn and Greg are fighting hard for Sawyer. They are giving him every opportunity at normalcy. Honing the skills he has shown he has and providing him with the edge to get new skills for the future.

I have always known my baby girl was amazing. She excelled at everything she wanted to do. She set high standards and reached them. She organized and executed her plans for the future. Williams Syndrome was not part of that plan. So now she and her husband plan to conquer or at minimize the effects of this obstacle on their son. As we are learning - no one can tell us what exact problems Sawyer may have - they may be large or maybe not! He has shown us he learns well, he has an intense interest in the world around him - and he is pretty sure most of it should be his!

Spending a week in Sawyer's world was a blast! We went to the beach (2 times), we visited the Children's Museum in Providence RI, we ate Godiva Cheesecake at the Cheesecake Factory and we got to hug and love on this wonderful family treasure! Of course we brought home a ton of pictures and videos to last us until we get our next visit in Sept. Best of all, we brought home HOPE - AND FAITH in Sawyer, in Dawn and Greg and in God -through Whom ALL THINGS ARE POSSIBLE!!

(KEEP THE PRAYERS COMING - FOR THIS VERY BUSY YOUNG MAN AND HIS FAMILY!)

SHAKEN FAMILY VALUES

2008-07-12T08:39:00.000-07:00

It has been an unsettling, (to say the least), week in Clarksville Tennessee this week. After a year of family turmoil, fears, successes and overwhelming bliss at Sawyer's progress, my faith in humanity was shaken this week by the actions of strangers and neighbors.

Early this week, it was hot! By mid afternoon it was in the mid to high 90s. Factor in the glorious southern humidity- and you can imagine how sweltering it was. It appears that a young mother, age 24, decided that a cool beer would be a refreshing addition to her day. So she drove to a bar, parked her car behind the bar in the shade (how considerate she was!)and went inside. Up until now, you probably think- so what is wrong with that? Has Joanne gone totally ballistic over drinking again?! Well, when she parked that car, she left her 3 month old daughter in the back seat! For 6 hours! 6 LONG, STEAMING HOURS!!

Patrons of the "Yes Dear" Bar say she repeatedly went in and out- but they had no clue her baby was outside in the car! At one point she got into a second car with a friend and went to ANOTHER bar!(leaving her baby unattended in the car parked behind the bar).

When the car was discovered by an employee of the adjacent business, police were called - but by now it was 5 PM and the baby ... was...DEAD. Body temp of 103.8. DEAD.

On the news that night they interviewed the bartender who said -"But she was such a good mother..." What? How could they say that? Tiny little helpless child, 3 months old - what could that mother have possibly done that was so good that it overrode the horrendous act of abandoning that child to go "get a cold one!"

Our community grieves for that baby - there is nothing we can do now to make little Faith's life better. Her suffering ended that afternoon in that oven of a car. She rests in the arms of God and is loved now - it is a pity she could not have been more treasured on Earth.

As if that is not enough for a community to absorb. Two days later, we, Clarksvillians, were greeted with the news that a local, church going family was arrested for (1)child abuse, (2) child rape (3) aggravated child abuse and rape. The persons arrested were the foster/adoptive parents of 5 children and the oldest adopted child of that family - a 20 year old daughter. Oddly enough it is the mother and sister who are charged with the "rape with an object" charge. The father is "only charged with "abuse". (almost makes him sound like the "good guy" in this local soap opera!).

I know this family. Oddly enough. Not personally, but as a frequent customer of our little charity thrift store. Sugar would not melt in this woman's mouth. She frequently talked of her church and all the activities she was involved with in that church. The oldest daughter - the one charged with rape etc. was often with her. She seldom spoke, a very very quiet young lady -(20 years old now). Now, here is something I am struggling with. The parents are black. The oldest daughter, Elizabeth, is white. They, supposedly, adopted her as a newborn. That would make it the late 80s. While I, personally, do not have any problem with racially blended families, I struggle to understand how DCS placed a white NEWBORN, blond hair, blue eyed baby girl with a local black family for adoption in 1988.

Anyone who is trying to adopt knows newborn babies are at a premium. Very hard to get a newborn baby who is in the legal system. Twenty years ago in the south - placing a white baby (6 weeks) with a black family - however wonderful they may be? unheard of!

I thought I might be over reaching here and talked to a friend this morning who is married to a black man and they have two beautiful daughters in their early 20s. I asked her if I was wrong about this being unusual in the 80s. She, too, thought it very unusual. She told me that when she and her husband traveled together, in the 1970s and 80s, one would go in and order food to go and they would leave. She said many restaurants in the South simply would not serve a black man with a white woman. She said they didn't want to break through any "color" barriers, they simply wanted to eat and it was not always an easy task in the South. Thankfully, that has improved but it has taken many years to get here.

The Perry's church put up $45,000 to get them out of jail. Lots of controversy over that. Many folks are saying "innocent until proven guilty". Others say, "Not so quick to come into the community when you are charged with child abuse & child rape". Many are saying it was an abuse of church donations to use it for bail money.

Coming on the heels of little Faith's death in that hot car, most are concerned about the safety of all children in our community. We cannot sit back and wait for someone else to act when it comes to child safety. The days of not acting or not wanting to be involved in what may be a long and complicated court case are over. Cain asked God, " Am I my brother's Keeper". The answer is "YES". We are accountable for what we know and how we act on that knowledge. We are charged to be compassionate, caring for one another. Giving a stranger a smile and a simple "good Morning" - could change the day for that person. It just might change their attitude and the direction of their day. We all need to be noticed - acknowledged and valued. We each need to make a difference in the lives we touch!

On a happier note - next week we get to "touch" those we love with a quick trip to MA to visit Dawn and her family. Scott is really getting excited about the plane trip! Every time he sees a plane on TV he says - "DAWN" -quickly followed by "and Greg". Of course, we get to see our precious little warrior, Sawyer. Dawn tells us he has become a champion stair climber! Last week when they SKYPED us, we heard Sawyer tell us "ALL DONE"! Such a sweet little voice - liquid love!

So in the midst of hellish acts locally, we find a beam of light ahead with family visits. Children are such blessings - treasures - and they grow up and march off into their own lives so quickly. Treasure them today while they are young enough not be embarrassed by hugs and kisses from mom and dad! God Bless!

2008-07-04T05:54:00.000-07:00

Today is the 4th of July! What does that mean to you? Independence? Liberty? Freedom from talking French or like a Brit? Probably not, sadly to say! In most cases, patriotic thoughts are probably clouded by thoughts of firecrackers or hot dogs!!

Now, there is nothing wrong with hot dogs - or hamburgers or that famous down south barbecue! Infact, it brings an over-abundance of saliva to my mouth just typing the words. (and an over-abundance of padding to my behind!)

Over the years, we have celebrated the 4th in many ways. As a child, I usually went to Cedar Point for a family picnic and day of swimming with my cousin, Jim and his family. Now, Cedar Point in the 50s was NOTHING like it is today. What we had, was a lake (Erie), some trees and picnic tables and a huge ferris wheel that made you feel as though you were dropping into that lake- and I think there was a merry-go-round. Pretty much, that was it. We stayed in the water most of the day, running out to grab something to eat and go back in the water. (My Aunt Louise would be yelling out about waiting 30 minutes and how we were going to drown of cramping).

I remember they had part of the lake partitioned off with a rope. One side for swimming - the other (and larger part) for the fishes. I can remember holding on to the rope and swinging my feet into the deeper water. My older, and wiser cousin, Jim, teased me that I had better get back on my side of the rope because the fish would bite my toes "over there". I quickly complied, never thinking:I WAS STANDING IN LAKE ERIE - THE FISH DID NOT KNOW WHAT SIDE THEY WERE SWIMMING ON! Still, I felt safe on my side of the rope!

After a long day of being in Lake Erie, eating more than I should have, we would load up and go sit on our car hoods and watch a wonderful fireworks show. Maybe my childhood memories are grander than they actually were, but I do remember them as amazing! Unfortunately, my Aunt Louise would start badgering us to get in the car and leave early to "avoid the traffic" long before the fireworks ended. Usually, my cousin, Jim, would hold her off. At that point, what was to be accomplished by leaving? THOUSANDS of cars were sitting "in the go position" in the same parking lot. Of course, we kids always fell asleep on the way home: sunburned, dirty, full of hot dogs and cokes and dreams of gigantic firecrackers in the sky!

My daughter has always been a fan of the 4th. She was still too young to understand the Bi-Centennial in 1976; however she was very vocal on wanting to see the fireworks. Even though it was past her normal bedtime- clad in PJs we drove to a hillside where we could watch the star-spangled skies. She cried. No, she screamed, she cowered on her daddy's chest. She begged to go home after the first explosion of light. Even more determined than his strong willed daughter, was my husband who declared,"Hell No! She has made our lives miserable all week begging to come here - and she is going to stay and have a great time!" She did not have a great time that night- but I think he instilled a love of fireworks in her that remains today.

For many years, we also have had a tradition. Our good friends, the Clarks, aka Steve and Carol, have come here for a BBQ and then we drive out to Fort Campbell Army Installation to watch the fireworks. Steve likes the red ones and ooooooos and ahhhhhhhs with our son Scott. A few years ago, Carol saw a "smiley face" in the sky. No one else saw it and Steve really teased her about that. However, the next year we all saw it and she was vindicated.

When you think of it, it is amazing that we had a July 4th to celebrate at all. The idea that all the inhabitants of this new world wanted independence in 1776 is rubbish! Most did not participate actively, if at all. Many who did support our little rag-tag army, did so with the thought that the British would soon put a stop to this non-sense and we would go back to colony status. But we won this little scrimmage. If it had not been for the intervention of other sources, (French, Spanish etc), who did not care a fig about our "independence" - they simply wanted a piece of the pie in the colonies if they agreed to stop helping us! Silly French - they did not expect us to actually "GET INDEPENDENCE" - just a new "Dependence on them".

Our forefathers were not real big on Liberty and Independence either. Oh! they liked it for themselves- but they were not really into granting liberty or freedom to slaves or indentured servants, native americans (indians), religions (other than their own), females (HA!).

Our forefathers were a pretty exclusive (small) group of rag-tag guys who started something that got out of control.

It spread like wild fire - and it still burns in the hearts of those who have it, those who want it and those who are willing to put their lives on the line to get it and keep it!

We buried one of those patriots this week in Clarksville. He was 20 years old and a recent Clarksville graduate who was serving his country in Iraq. 20 is too young to die - for any reason. Thank you Joshua Lee Plocica. I did not know you but I appreciate your love of this country.

SO HAPPY 4TH OF JULY EVERYBODY! ENJOY THOSE HOT DOGS, HAMBURGERS, BBQ AND BAKED BEANS!

ENJOY THE SOUSA MARCHES, THE FLASHES OF RED AND GOLD IN THE SKY TONIGHT!

THEN TAKE A MINUTE TO HOLD YOUR LOVED ONES CLOSE AND SAY A PRAYER THAT THE EXPLOSIONS IN THEIR LIVES ARE RESTRICTED TO THE FLASHES IN THE SKY ON A 4TH OF JULY NIGHT!

GOD BLESS YOU!

Walking away

2008-06-22T11:04:00.001-07:00

One of our children's biggest milestones is walking. When you hear someone has a baby, we always ask "Are they walking yet?" It is more out of habit than actual interest. (maybe not) Being a mother of a special needs child - who was almost 2 when he walked -although I had to actually go back and look it up in his baby book to be sure. I am sure we celebrated when he did (finally) walk- but in the great myriad of things - today- almost 41 years later - It did not make the grade of important facts to remember.

When our precious Sawyer was diagnosed with Williams Syndrome - the "Is he walking" question came up. I suppose some would like to add "Will he walk?" Yes! He will walk- in his own good time; just like any other child. A friend of mine shared that her 3 boys (all perfectly normal) - were 16-18 months before they walked. She said she was too young and dumb to realize that might be a little late for walking with the first child and with the other two, she was too busy chasing the first then second ones to worry about how the third was getting around! Today they all walk perfectly fine - Thank you very much!

Sawyer is getting close to walking. He could now if he wanted to. He plays with our hearts as he pulls up with ease - and marches around furniture, then drops to the floor and crawls away. He has developed a new "trick" of standing on his hands and head and looking backward between his legs. He looks as though he is about to attempt a summersault. The PT has already gotten him to climb up the stairs - a feat Dawn and Greg have spent a great deal of time and money to curtail with gates and diligent guarding of the steep staircases in their home.

Walking. A skill we all need to learn, if possible, yet a skill that takes us away from the cheering section that prodded us to walk in the first place. As parents, we clap and giggle like 5 year olds at the circus when our toddlers begin to take those first independent steps. YEAH! You go baby! Good walking. We do not think at that point that those walking feet will someday go further and further away. Away from home, family and broken hearts.

We strive to make our babies independent. What seems to be annoying and clingy with little ones, is most missed as our "babies" growup and no longer want Mom and Dad to be as deeply involved in their lives. I think that is why mothers delight in their daughters' weddings. They are once again needed - called on for help. They are again involved in their child's lives.

To be clear, walking away is normal. It is as it should be. We, as parents, are meant to prepare our children to be independent. It is a good feeling to know that the toddlers we raised have become self-sufficient, independent adults who can fend for themselves quite well without their family cheering section. (Although many times unseen and unheard we cheer for them from a distance!)

So Sawyer will walk soon. I know it! But take small steps little guy, we still need to be needed. We still need to feel you reach out your small fingers to hold onto our hands for safety. Just know, however far away you may walk, our hearts and prayers go with you, just as they did with your mommy when she walked out of arms reach! God Bless

Of Fathers & Daughters & Sons (&Stuff)

2008-06-14T08:36:00.000-07:00

Tomorrow is Father's Day. This is a day I did not celebrate much as a kid. Oh! I bought the card, and usually some "Old Spice" after shave or a carton of cigarettes- (Okay! bad child - but it was politically okay to smoke in the 50's), for my Dad; but I did not think much of the holiday. Probably because it did not center around me!

My Dad. What can I say about the man that was (is) the center of my universe? He was a man of character who had a very hard life. His mother died very young and his father remarried a less than sterling woman who put his two sons out of their home the afternoon of his father's burial. Compasionate neighbors took in the boys - even though that meant living with two different families until they reached the age of 18. Even though he had earned the right to be bitter about his youth, I never heard my Dad say a mean or cruel word about his step-mother. When she died years later, I have a slight memory of a conversation between my Dad and his brother about the funeral which would be in another state. My uncle was all for ignoring it. My Dad reminded him of their half sister and said they needed to send flowers for her sake - and did.

My Dad was not a demonstrative man but I knew to the bottom of my soul that he loved me. he never scattered "rose petals" before my feet, but he could make my heart soar with the words-"That's my good girl!". One way I remember he showed his pride and love was with my report cards. Of course, the teachers always told us to "get them signed and returned the next day". Well, that just didn't happen in my home. My mother would have to call Dad at work and tell him - "Jerry Campbell for Christ's sake! Bring Joanne's report card home at noon! She needs to take it back!" He would carry that card to work with him and show it to everyone he worked with! When returned to school, it was no longer pristine - it was folded, and marked with finger smudges where all the coal covered guys at work at marveled at my academic achievements.

He may not have been overly zealous in telling ME he was proud, but he boldly told the world around me. This year for some reason, Father's Day has brought a cloud of melancholy. I miss him horribly. Tears are never far away this week. I realize that everything I do I temper with what reaction would I get from my Dad? Would he approve? That is always close in mind and heart and he has been physically out of my life for 46 years. Now THAT is some Dad!

One thing I know my Dad would approve of, is my choice of life mate. I did not set out to marry a man like my Dad. However, I did. At 17, I did not consciously say, "Gee Ed has the character traits of my father..." Shoot No! I thought Damn! He's hot ( Black hair - blue eyes ) and I have no earthly idea why he looked twice at me - but I sure am glad he did!

Ed is amazing - as a husband and especially as a father. His commitment to family is amazing. As a mother with a special needs child, I am well aware that having a son who will always have a priority on our time and resources can be a deal breaker on a marriage. Just attending a meeting for families with mentally retarded children will show many marriages do not survive the stress of this variant in a marriage. Mothers are there and many fathers are not! I do not know why many men cut and run when their children are not perfect - but they do. Oh! I am sure many mothers would like to run as well - I can attest to that - but usually they stick around but many fathers are gone.

Both my Dad and my husband are marshmellows. Somewhat crusty on the outside, but mushy on the inside. My friends always thought my Dad was "Mean" but they never knew the soft heart that worried about my friends who did not have parents who were strict. I have heard my daughter's friends comment on her "strict" father too. Like his father-in-law before him, he worried about his little girl and had little concern for what her friends thought of his behavior.

We have a special needs son. Scott is almost 41 now. In the beginning, the majority of his care fell to me. I always knew Ed was close by - but caring for the day to day things was my job. As Scott got older and we faced some obstacles, Ed became our rock. When our "rock" crumbled in 2001 with a heart attack, a new bridge was formed. While in ICU, Scott did not want to leave his Dad, it was like he had some innate sense of danger for his Dad. Ed asked me at one point why Scott had not gone out to the waiting room. He was concerned about his Dad. He would sit and place his hand on his Dad's arm - needing that connection. A couple years later, it was Scott who lay in ICU after a heart valve replacement, and it was his Dad who held his hand and told him not to be scared - it will be okay.

Ed loves his kids and could not be more proud. He, too, carried report cards around or at least bragged of Dawn's grades. While he chided her for her brazen attempts to do be a daredevil at times, he secretly told his buddies how fast she could skate or ride her bike or go fishing with him.

At sixteen, he bought his daughter a car - okay by definition, it had four wheels and a motor, so it was a car. It was also a clunker. She drove it to the mall one Saturday and called home about 8:30 with a report that the car would not start. (Ed says everyone should have to start with a clunker - it gives you character and makes you appreciate a good car when you can afford it!)

He wanted to leave the car there until the next morning - but Dawn was in tears and was embarassed in front of her friends because her "car" would not start. They (the friends) said she would need a tow truck. Well, "thems fightin' words" to my man! So off we went to the now near empty mall parking lot, armed with a screwdriver, hammer and wrench and flashlight. When he heard the challenge from the "snotty nose teenager" (Ed's opinion), he was not going to leave that parking lot until that *$#@ car started. Well, it did and Dawn drove it home. Proud of her Daddy and he was proud to BE her Dad!

I lost my Dad when I was 14. As painful as it was that day, I had no clue how much or how long that would hurt. I know he would be so proud of his grandchildren! Just as this new "Grandpa" is proud of his Sawyer! Like him, his son-in-law will face problems with Sawyer because of the Williams Syndrome. Grandpa cried when we learned of the hurdles our children and grandson will face - but he dried his tears and reverted to being the rock to his family he has always been. His has faith in his "Little Buddy". He loves him without reserve and would not trade one hair on his head - (well, he has to admit the haircut Dawn gave him was a good improvement!)

I am blessed with the family God gave me. My time to learn from and love my Dad was much shorter than I would have chosen. But he gave me more in 14 years than many Dads do in decades. My beloved husband has taken up where Dad left off. He loves his son and daughter and cherishes his "Little Buddy" each day! YES! I AM BLESSED!!!

PS- Happy Birthday Gwen - See I didn't forget!

Old Times with Old Friends

2008-05-29T13:11:00.000-07:00

Memorial Day weekend is a reunion weekend for a group of our Air Force friends. The guys were all in the 75th MAS at Travis AFB CA in the 70s-80s and served as Loadmasters on the giant C-5A aircraft.

There is a very tight bond between servicemen. Each group thinks theirs is the best. Of course, we all KNOW that the USAF is the tops!! =-)

For many years we were friends with most of these guys. I knew them better than their wives in most cases. Of course, wives, in most cases, changed. Some way too frequently! One guy, Ron, is on wife number 3. The only way my husband can remember Ron's current wife's name is to think of Ron's dog - who shares the same name as wife number 3. His theory is Ron had 3 wives but only one dog - so the name is easy to remember that way.

We seldom see these men who are now all retired and scattered around the country. We get the obligatory Christmas card - and occasional email. Nothing more. Still it is nice to catch up on their families. Most had young children who are now married and have children themselves.

It is weird that when I think of old friends, I mentally see them as I knew them 30 years ago. I am not totally daft - I do look in the occasional mirror and I know I have aged and assume they have as well. Yet, it was shocking when we had the first get together in Little Rock several years ago. The first reaction is "Oh! My God! You are old!! Where is your hair, your teeth, and didn't you used to be 40 lbs lighter? (Okay- that was for the guys! - I would never think such things of the wives, but then I did not have the chance because they all showed up with new wives.)

It is difficult to be social when you have no past history.I vaguely recall the wives from California and have never met this group. Still, the first year was nice and Ed loves to see his old buddies.

I decided after the first year to leave the reunions to Ed. He enjoys sitting there retelling all the same stories that have been rehashed each year. This year, he says it was different. They compared medical problems and procedures. They joked about Benny having dentures that do not have a large gap between the front teeth! Benny even had the dentist remake the dentures to include the gap - but all agreed, it was not enough to look like Benny! Chip has gotten old too. He was the student when we left California. He has joined the ranks of old retired Loadmaster with less hair and more belly!

I do not know if other segments of the work force reunite like the military - do accountants or bankers come together to talk about the old days when they actually used paper journals? (Hey! I used to work in a bank and I remember that!)

This group of Viet Nam era vets may glorify their service days. They rarily, if ever, talk about combat days. It is the personal relationships that have lingered and I hope they have many more - AIM HIGH! AIR FORCE!!!

REMEMBERING THE FALLEN ...

2008-05-26T06:27:00.000-07:00

It is Memorial Day. Do you remember why? Is it about the "first day" of summer? No! Is it about when to wear summer whites? No.

It is about remembering the ones who stood for this country - their country - and ours and gave their lives to protect people who often did not know or care for them.

We, as a nation, have produced generations of patriots. Men and women who willingly gave of their time and talents to protect and serve our country and often other countries who were in need. As payment for that service, far too often, these generous, brave patriots made the ultimate sacrafice: their lives.

I have been a part of the military community since I was 17. My husband was already serving in the Air Force when we married. He was committed to a demanding mistress. When she called, he had to go - leaving family and friends behind to accomplish whatever mission the mistress required. It did not matter the day, (December 25th, July 4th), he served when called. I have not always understood that, but I knew it was his calling and he went.

This was not my first experience with the military. In 1952, when I was 5 years old (Okay! Now it is official I am OLD!), I have one of my first really vivid memories. It was winter - nearly Christmas or just after. My mother's cousin, Red, and his son Odell were visiting us. Red sent Odell to the grocery for lots of eggs and milk to make eggnog. My Dad said it was a good waste of eggs and milk, not to mention the liquor he poured in it. Odell who was very young - about 20 years old - passed on drinking the eggnog and asked for a coke.

I remember sitting on the floor, coloring in a oversized coloring book. It was about a circus. I showed it to Odell and asked him if he wanted to color a page. My mother rebuked me for "bothering" Odell with that mess. Odell, pulled the book across the floor and told her it was okay - he liked to color and then he proceded to color (very well) in my new book. The next day he left for Korea.

Korea. Not even a war. They officially referred to it as the "Korean Conflict". They shot bullets at people. It was a war. Months after Odell colored in my book, there came a knock on our door. Odell was dead. Killed by bullets in that "Non-War". With the possible exception of my father's death, I do not remember my mother ever being so destroyed. I can see her laying across her bed sobbing. Totally disolved in tears.

As a five year old, I did not understand what had happened. I had never seen death enter a home before. It was not a welcome visitor. I asked my mother about school. She had always been so strict about getting ready on time. She sobbed from her pillow - Odell is dead- you don't need school today!

I still have that coloring book. My mother must have put it away as I doubt that I would have known to do such a tribute. Keeping the last thing he touched in our lives before he left to die. The colors are still as bright today as they were in 1952 when he sat crossed legged on our living room floor and helped me decorate the circus in that book.

My mother died in 1970. She grieved until the day she died for that lost boy. She shook her head over Viet Nam and proclaimed we just never learn. She had watched her younger brothers serve their country in WWII. She did not want to give up another piece of her heart to a lost soldier.

Maybe we do learn. We learn that life and freedom are precious. To achieve them, many have paid everything they possess, even their lives. Those who loved them know how much their service cost.

Today, we remember - or we should - the Odell Hightowers of the world. Those young (and not so young) who gave of their time and talents to stand tall and say "I serve".

God Bless them for this gift! Because of them, We can stand tall today (with our plates of BBQ and potato salad in our hands) and say I AM AN AMERICAN - AND DAMN PROUD OF IT!

Technology after 60

2008-05-21T05:35:00.000-07:00

Ed has always been curious about new gadgets. He HAS to have a "toy" of some sort to play with at Christmas. I, on the other hand, have always been satisfied with the status quo. I am fearful of changes and if it were not for pressure from within this house, (and the unavailability of replacement ribbons), I would still be banging away on my old typewriter.

Over the past few years, Ed has given me two large "day planner" books. (do you think he is trying to "TELL" me something?) Maybeeeee! I admit the first one really was a lifesaver during the planning of Dawn's wedding. Everything -and I mean everything was written in that book. Phone numbers, dates, confirmation numbers and receipts were all there. So the day I drove off from work with the thing planted on my car's roof, became quite traumatic. Thank goodness I had detoured into the nearby Walmart parking lot and when it fell off, a passing motorist started blowing her car horn and flashing her lights! I thought she was a total nut case or perhaps a mass murderer with a unique approach of obtaining victims. Then I found out WHY she had flagged me down and I was ready to nominate her for sainthood!

Anyway, the large day planners were pretty much replaced by a "Palm Pilot". I do like the palm. Much smaller and avoids the nutty professor look with the old lady toting a large black binder.

Then I added a cell phone to the mix. Lots of technology to tote around to pretty much tell me I have no where to go!

Then they came out with the "Blackberry" type devices! "Egads!" says Ed - well, not really, I do not think he has ever actually said "Egads" - but you get the gist of his excitment.

I went to look at this new wonder and was put off by two things. First the price. they were about $400 and no way was I paying that for a cell phone with a $29 per month phone plan! Second was the teeny-weeny little keys! Have you SEEN these dinky little things. About the size of a zit! I looked at my chubby fingers and decided that this just would not work.

Then, just prior to Mother's Day, they put the phones on sale. Just $99 and I could be high-tech again. I began doing finger curls to reduce any resistance to punching the keys!

I looked on line and found a real beauty! Red and sparkly - YEAH! that is me in a package! I ordered it and began to plan for all the things we could do!

Our first task was to return to the sales store because the sims card they included would not work. The young man behind the desk suggested I might take it home and call the AT&T help line and I suggested he make the call as my butt was not leaving the chair until the phone worked! We sat there together for about an hour as he waited on the phone for someone to "help" him. We were both reassured several times that "Our call was important to AT&T -" but that fact did not speed up the process.

One bug in this whole problem, was that I was assured before the purchase and by the young man in the local store,that I did not have to upgrade my phone plan to operate this new phone. NO, I would not be able to access the internet or use the GPS system, but that was okay with me! They told me I could use the software on my computer to transfer my Palm data into my new toy. They lied!

Later when I spoke with yet another representative about my problems with the computer software - I was told that inorder for me to use the software I had to subscribe to the online service - an additional $50 per month. Nope- not going to happen! Do not need it - and not going to buy it!

So for two days, I sat and poked itty bitty buttons as I watched tv. I managed to load all my phone data, my calendar etc into this glitzy little red box. I sound so posh when I say -"Oops, excuse me - my Blackberry is about to ring". People think I am becoming psychic with the thing - but actually, the phone vibrates before it rings and makes my hips tingle before it actually rings! So I feel the call before I get it! (THIS MAY BE A FEATURE AT&T SHOULD PROMOTE MORE! -MAKES YOUR BUTT TINGLE!) Who else can claim that!

Who says I am not high-tech! Watch this mama go!

Generations of Mothers to celebrate!

2008-05-09T14:13:00.000-07:00

In just a few days, it will be Mother's Day again. With age, comes it perks, and one of them, is being a "Mother" on Mother's Day.

I was thinking back over the years I was the celebrator of Mother's Day. Paying homage to my mom, Dallas. I made the special cards - although my artistic talent was very lacking. I remember going to the "dime" store to purchase the special gifts. Oh! The "Blue Waltz" perfume - It came in a cobalt blue bottle with a fancy silver stopper. If you paid more, and got a bigger bottle, it had a fringed tassle around the cork and was packed in a fancy box with blue velvet lining. None of the fancy rapping altered the fact - that stuff stunk to high heaven! Later, came Avon and Topez cologne! Woo-woo! More stink! Very strong stink.

I pulled out some old pictures of my grandmothers - great grandmothers too. They were powerful ladies.

Let's talk about Abigail Beaty Williams. Married to James W Williams, she lived from 1840- 1920. She was a very tiny little lady. She reminds me alot of my mom. Abigail has quite the reputation - depending to whom you are speaking.

Small in stature, she was called "Mama" by everyone. She was widowed for many years and even though there were several adult sons in the home - she ruled the roost. Her son's first wife died young (my grandmother, Naomi), and "Mama" took over their children as well. Rumor has it, her sons were not very stable. They liked to play music, and have a good time.

My grandfather had many grand money making schemes - none of which worked for him, mostly because he was tender hearted and did not demand payment from his customers. For that reason, my great grandmother controlled the money and was said to have kept it in a cloth bag between her feather mattresses. If you needed money, you had to ask "mama".

Naomi Boatwright Williams was the first wife of James A Williams. (son of Abigail). She lived on the family farm that came from her father's family. The hoard of Williams' men (and Mama)- moved in and Naomi was busy raising her brood of 6 children. She died young, leaving her children in the care of "mama" and later a step-mother, Arlee Richardson Williams. Mama did not make life easy for wife number two- but she produced 3 sons and provided a loving female for the children of Naomi.

One of Naomi's children, was my mother Dallas Williams Campbell. Raised on a farm in KY, she knew that was not the life for her. She left KY when she was 18 and moved to Ohio where she trained to become a nurse, met my Dad and gave birh to a son, Arthur Yule in 1930 and a daughter, me in 1947. Dallas did not have an easy life. She was crippled with Rheumatoid Arthritis from her early twenties. She tried every cure that came along, but got little relief. Married in 1929 to the love of her life, she managed to raise a daughter in spite of her physical limitations. (Their son died at the age of 7 months.)

I truly do not remember her complaining a lot about her pain. And she had lots of it! She took cortisone daily and the side effects eventually killed her. Like her grandmother before her (Abigail), she faced the trials life gave her and plowed ahead.

My greatest triumph is my two children. My oldest, Scott, is a treasure. He loves without limits and asks so little in return. Labled:mentally retarded, special needs, developmentally delayed - he is just Scott and he is someone that inspires me to get up each day and keep going! When I want to quit, am tired and somedays at my lowest web, I think of Scott and know I have been blessed and need to get over myself.

And then there is my baby:Dawn Marie. Oh! How I waited for her to come into this world! I had so many dreams and plans for our life together. My husband was adament that she would be a girl -he just knew it and wanted it that way. She has always been Daddy's girl - but I breath in each day with her and hold it deep inside as long as I can. I can smell her hair on her pillow after she has been home for a visit - it can bring me to tears with longing for her nearness - yet comfort me in her absence.

Children leave home and grow up. That is as it should be. I am proud that she grew up to be a compasionate woman, filled with love for her husband and son. The challenges she faces over the next years with Sawyer's health and hurdles in life may slow her down but they will never crumble her. She is her father's daughter and I know she has the strength of character to take on the world for those she loves.

So this Mother's Day, I will remember the generations before me that were called "Mother", "Mama", "Mom" etc. - and know that in some measure they made me the mother I am - good or bad. There is no other title in this world (well maybe Grandma) of which I am more proud! We have a pretty good club and I am so happy God let me be a member of this "Mom's Club!"

BLUE SKIES AHEAD...

2008-05-04T08:08:00.000-07:00

It is Sunday morning and I am getting ready for church. Actually, I am a tad early because I looked at the clock without my glasses and was a little off ... by an hour. So here I sit, church clothes on, so I must be careful to avoid lint, grease, anything that could stick to these good black slacks! I am a human magnet for things that ruin good clothes.

Friday night we were told to expect storms. We had been under a tornado watch for most of the day. Storms came and went but none that were severe. So about 11PM I headed to bed. Around midnight I was awakened by horrific winds and hail beating on the outside of our home. (That is always a good sign, if the winds and rain are on the outside instead of hitting you on the nose as you lay in your bed.)

Then I heard the tornado warning sirens from Ft Campbell - which is very close to our home. Deciding to check the tv weather before routing my son and husband out of their slumber to race to the basement, I ran to the living room- flipped on the TV and watched the colorful radar display showing the approaching storms.

After a few minutes, I was convinced that we were not directly in the path of the storm and went back to bed. My reentry woke Ed and I took that opportunity to pass the gauntlet to him. (It is the man's duty to 'protect" the family - right?) So I mumbled - "Tornado sirens are going off". I have to say this because my husband's hearing is not good and unless you are standing in front of him with a bullhorn- he will not hear you!

Doing the manly thing- he pulled himself upright and retraced my path to the TV to gauge the need for basement entrenchment. He did not return to the bedroom so I turned over - covered my ears and went back to sleep.

The next morning I learned that indeed, 4 tornados had touched down in our county. Several homes and mobile homes - a semi truck and our large pavillion at the fairgrounds had been damaged. They were weak tornados but I do not think that mattered to the families who now sleep in hotels or friends' homes.

Yesterday, the skies were a perfect shade of blue. Only the slightest hint of a puffy cloud here and there. A calm beautiful day.

I could not help but compare the weather - dark and threatening on Friday night - to our recent trials and despair over our beloved Sawyer and his parents. It did seem so dark for days. But the blue skies we loved yesterday are just testimony that the worst possible fears can be replaced with joy and beauty.

We do not know what Sawyer's limits may be - but when I think of the best picture - we never DID know what he was capable of. One by one his tests have been good. One by one problems are being replaced by hope.

A good friend of my - Justine Cooper - reminded me last week of Lazarus. "Do not forget," she said shaking me. "Lazarus was dead and stinky - ready for the grave- and Jesus said 'Come to me'!" And he did!

Just because we have a diagnosis - does not mean we have less of a person. Our little guy continues to learn and grow and amaze us with that smile. I want to put the diagnosis out of my mind and just enjoy the blue skies that Sawyer brings in my life.

Today is another blue sky day - Thank you Lord! I have to rush - for now - I truly am late for church!

...and the winner is....

2008-04-26T18:11:00.000-07:00

not us. Hemingway said, "Ask not for whom the bell tolls, it tolls for thee." I do not think of bells tolling as good things. They are warnings or markers of sad moments. I remember my mother telling me about being alone in the little cottage near Mansfield Ohio where my father worked in the Ohio state reformatory on Dec 7th, 1941. She said she kept hearing bells ringing - lots of bells. The peach tree outside her home scraped the windows in an onerous kind of way and she could hear the paper boys screaming out the call of a special edition on a Sunday - which was very unusual. She was scared and wished for my Dad to come home and somehow make it all right. He eventually came home - but it was not all right for a long time.

Flash ahead to 2008 in another Mansfield, Mansfield MA.Several weeks ago our family was dealt a blow when doctors began to research the possibility that Sawyer might have a weak link - chromosome link that is. How could this perfect little guy harbor such a secret? My mind could not fathom such fate - and my heart? well, it just couldn't tolerate such a blow ---not again.

The days and weeks went by - Dawn and Sawyer were here for a week and if we weren't in love enough already - well, Sawyer just drew us in deeper. Is it possible to drown in love? It is more like quicksand - once you are in - oh boy are you in!

And then it happened. The call. The one I had prayed so hard would never come. The doctors were right - Williams Syndrome had intruded into our little Sawyer's life. I have cried enough tears to float a battleship - I have railed at the heavens for this travesty- and yet nothing changes.

Hopefully, medical science has progressed since the days when doctors asked me when I would "put Scott away" - for the betterment of the family. I am sure they have made huge strides with behavior management and will be able to monitor and assist with his physical needs. That's the thing about Williams (at least from what I have read- and discussed with Dawn). There is a myriad of possibilities - from minimum to major problems. Many, we will not notice until many years down the road - and maybe never. (there comes the optimist in me!)

I look at pictures of Sawyer and his mom and dad over the last year and the thing that stands out most - is love. They love him so much and he loves them. So many people in so many places continue to pray for Sawyer - maybe we didn't get the answer I wanted for these prayers - however, Sawyer is still Sawyer. So many people love him and want the best for him.

I could be mad at God for this trial - and I was. But I still have faith that God will watch over Sawyer and guide those who care for him. I have no doubt Sawyer will make his mark in this world - doing it his way, and that is okay with me as long as I get to be a small part of his life. I may not understand why it has to be this way, but I am glad he is in my life. He is my heart!

I refuse to waste today worrying about tomorrow. The problems we fear the most may never materialize. I want to enjoy the smiles and sloppy hugs Sawyer gives out. I don't care if he smiles because he has Williams Syndrome or because he is just a happy little boy. I love my Sawyer and I expect great surprises from him, just as I did from his Mom and his Uncle Scott. We will face obstacles as a family - together we will help Sawyer be the best young man he can be ... and that's all we can ask of anyone!!

A Few Clarifications!

2008-04-13T11:28:00.000-07:00

The picture above was made just minutes before I had to leave Providence to return home after Sawyer's birth. I look like a spot-lighted deer! When I think of that day I, for some reason, think of the old church song, "Joy, Joy, Deep in my Heart!" - that probably is not the name of it but it was so bubbly and explained the JOY that filled every part of my soul! Absolutely nothing could have made me happier than holding that little guy before I left. I think Dawn knew that - as she repeatedly call the NICU to allow us in before I left. It was her perserverance that gave me that moment and I will forever be grateful.

When I got to the airport, it was crowded and it ended up being a mad dash for the plane- through security and the myriads of people who were fearful of becoming stranded in Providence by the snowy weather that was going on outside. Thankfully, I did not get a moment to think or slow down, or I might have called Ed and told him -"Honey, I have been delayed - and I won't be coming back for oh... let's say 18 years or so - until Sawyer grows up!" As I told Dawn this week in the middle of our cry session - I would walk through fire for that little guy - anything - as would all of us who know and love him.

I have read literature about Williams Syndrome this week - I have cried and I have prayed. I feel confident that Sawyer's name went out from every church in Clarksville and Todd County. We lift him and his parents up to the God that created them and ask for his blessed intervention and mercy -against this darkness that Satan has brought into our lives. I in no way blame God for this - darkness is not a part of his plan. I rebuke Satan for trying to bring us down! Our lives and our hearts belong to God Almighty and all my faith is in Him.

We do not know what news will come our way in the following weeks. However, this Grammy will not let another day be wasted on "What if". Nothing that happens or does not happen will change the love I had for that baby on Feb 12th 2007 or on April 13 2008!

I remember when I got off the plane in Nashville on Feb 14th after holding that precious life - we stopped in the parking lot and looked at pictures I had taken just hours earlier - people wanting our parking place could just wait. I told Ed-"Oh Ed! You cannot imagine how much love comes out of that child! He is so wonderful and such a blessing in our lives!"

So for all of you who share my belief that God is all powerful - all knowing and all loving - lift up those prayers and ask for Sawyer to get good news really soon! As for Satan - he can go back to the portals of Hell where he belongs!!

Fact or Faith?

2008-04-10T13:21:00.000-07:00

It has been an exciting year! It all seems to have been about Sawyer! We like it that way!!

There has been our share of worry - the early delivery- the hernia surgery - the recent scare with his heart... but now the biggest heartache of all.

When Sawyer had his 1 year checkup, his doctor thought he heard a cardiac problem. So he referred him to a pediatric cardio person. We waited and prayed about that and then Sawyer was given a good report! (Thank you Lord!)

That doctor (the cardiologist), suggested they see a geneticist. Having been through this with Scott many years ago, I thought it would be fruitless and did not worry too much before the exam.

Now, the doctor feels Sawyer has Williams Syndrome. Not something the average person would know about. It is rare 1/7500 births. It has varying degrees of medical complications and 75% risk of m/r.

Our hearts are crushed - even though the blood has not yet been tested. Dawn and Greg have accepted all the signs the doctors have pointed out. It is fate accompli with them. I do not criticize them at all for this. They are still in shock and reacting the best they can. Between the tears and the acceptance sits the same little guy that we have loved for almost 14 months.

I have alternated between tears, prayer and anger at the doctor that brought this to our doorstep. Why could he have not waited until he knew for sure to put a name on Sawyer's problem? Was he so wrapped up in his conviction that he never doubts himself? Did he forget that this is not Williams Syndrome Child #1 - this is Sawyer Matthew Low - and as I look at his pictures - I forget about labels and diagnosis - I see love and brightness and my Sawyer and I love him. None of us have guarantees of what our children will become. We can offer them the best and brightest education and they can turn their backs on it to become tatoo artists. Would I love him less? Absolutely not!

If you think I sound as though I do not entirely accept this edict from the big docs in Boston - well maybe you are right. I am still praying that God will make this right. That Dawn's heart can heal and the smile that this little guy puts on our faces comes without shadows. I cry for my fractured dreams, but I ache for my baby's loss as well. (Dawn).

Life is not always fair - but does it have to hurt so much? Please pray for this family - especially Sawyer! Lift him up to be strengthened and spared the darkness of this syndrome. Be patient with us - we may have to adapt our plans a little but we plan to continue to love this little guy and are so thankful he is part of our family! (PRAY HARD!!

Snow in March Sucks!

2008-03-09T08:49:00.000-07:00

The old adage says, March comes in like a lion and will go out like a lamb --- well, I sure hope so, because we had a lion roar through Tennessee this past week! I knew we were in trouble when they (the weather gurus) spoke of accumulations later in the week. They totally bypassed the word "possible" which always gives us hope for a near-miss.

We had sleet and rain on Tues- but Wed seemed okay- Then came Thurs night, Friday and oh! my God! Friday night. We awoke to 6 inches of snow! Now okay, I KNOW that is nothing to you hard core snow lovers - but now my snow "low-light" went out years ago. Even the mere mention of that word gives me hives.

Waking to find my world colored white was not pleasant. Add to that the knowledge that I had important tasks to complete that made travel necessary - and this wintry postcard look had worn out its welcome!

They say it will warm up today, giving me hope for a green (or slightly green & brown mix) yard. I hope all those who burn my butt with moans of "Oh! I love snow! I wish we had more!" got their thrills! As for me, I am dreaming of a warm and very long Spring!

Slowly, steadily moving forward!

2008-03-04T13:48:00.000-08:00

A week has gone by since Sawyer's miracle doctor's visit! The feeling of gratitude has not subsided at all. However, before the glow dimmed, another doc added another obstacle to our path to ever lasting happiness. The cardiologist sent word to the pediatrician that he felt Sawyer should see a genetic specialist. Boy howdy! that little guy is not going to miss a speciality in the medical field! By the time he finishes, he will need a geriatrics guy too!!

I am sure there is some heart disease in both sides of Dawn's family. My Dad had a heart murmur, but was not affected by it. It was sufficient enough to keep him from being drafted into WW2, but he fought that tooth and nail and would have gone if they war had not ended when it did. (He was so disappointed!) Ed's family on his Dad's side has heart related problems, however, I am not sure how much is medically induced and how much is promoted by a very unhealthy lifestyle. I swear those folks do not consider it a meal unless it has an inch of bacon grease on top! Add to that a history of smoking and it is no big surprise that they have heart problems.

Today the early intervention folks came to evaluate Sawyer. He was his very sociable self and passed his socialization skills part with flying colors. The only thing he was weak on was his gross motor skills. (Walking pulling up etc.) I think if he had another healthy month - he would have that too. They wanted him to play with a doll, but he nixed that idea. He wanted the musical instruments.

And so after they return from a week in Florida, Sawyer will start getting visits from Early Intervention to promote his walking etc. A good thing - and he will sail through this in his typical "Sawyer" style.

I hope the weather is great in Florida - he needs a some warm days on the beach to chase off those cold MA germs. Safe trip little guy- soak up some rays for me!

GOD is great!!!

2008-02-27T06:26:00.000-08:00

I was raised attending church. Actually, Sunday school - going to Sunday services was rare and in my child's mind - boring. I have never questioned the authenticity of the Bible, never doubted there is a God - that Jesus Christ was his son, was crucified and rose again to ascend into heaven.

I also have never been very verbal about this belief. As an adult, I have attended services- although not as regularly as I should. The guilt is there - I know I could and should do better. While I try to convince myself that watching a TV preacher -however good - is a satisfactory substitute to attending local services - deep in my gut I know I am WRONG. It is not as good, in fact it is a cop out and a poor one.

As I age, I feel less and less compelled to hide or in some how camouflage my faith. I am not in any way ashamed of knowing there is a God - my God - my hope and support in all things. In younger years, the majority of my friends were not "church going" people. Most would not out-right ridicule a person for being a person of faith - at least not to their face. Given enough "Coors" though, some would get pushy about my resolution against alcohol and drugs. Yup! I went through the 60's, 70's and 80's (okay 90's too) without drugs and very little alcohol.

I never liked the taste of booze- had to cover it up with lots of fruit juice etc. Finally decided that if drinking was for pleasure --I would be a lot more pleased to be drinking cokes! I never judged others who were imbibing (at least not to their faces!) I remember having a debate with Benny years ago (a very long time Air Force buddy), about how I was missing out on the fun (according to him) by not partying with them. "Just wait until you die and find out there was no reason to not party", he told me one time. I retorted with 'Just wait until YOU die and find out I was right!"

My point for this sermon came from an experience I had this week. Our precious grandson was born prematurely and the parents were told there was a malformed aortic valve. At his one year evaluation, the doc thought he heard a problem and moved up the May visit with the cardiologist. My heart broke: for Sawyer, for myself, and for his parents, whom I knew were afraid of what lay ahead. I tried to say all the right things but I am sure it was not enough.

So I put my fears where I always do when I am scared beyond breathing. In God's all healing hands. With every breath, with every tear I pleaded for God to heal little Sawyer, for God to lift him out of harm's way and mend his little body. This little guy has been poked and prodded so much in his short first year - physicians are wonderful - but God's healing is perfect!

Yesterday was the day for the cardiologist's visit. Dawn was to call me as soon as she got the doctor's answers. Well, folks, the answer was : SAWYER IS FINE! No new problems -in fact, the problems they saw at birth? Well, that is no longer an issue! He will be fine and I know why!

I've said it before and I'll say it again: THANK YOU LORD - NOT ONLY FOR SPARING OUR SAWYER FOR ANY NEW PROBLEMS - BUT FOR HEALING THE OLD ONES! THANK YOU!

I accept it on faith that God DID heal this child. By HIS will Sawyer is fine and I do not care who or how many people "poo-poo" that idea. Doctor's did not heal him - modern medicine did not heal him. God did! so there!

I truly feel sorry for people who totally rely on themselves for all things. How hard their lives must be not to know the comfort of having a heavenly Father who loves and cares for you and can master all things - no matter how difficult. That is why they are called miracles. We received one yesterday and again I say 'THANK YOU LORD!" (credit where credit is due!)

It is a cold and snowy day here - but the sun is shining in my heart and somewhere in MA there is a little boy who has a strong heart and I truly hope someday he knows why.

365 DAYS OF LOVE!

2008-02-11T10:39:00.000-08:00

Tomorrow is a big day - Sawyer - our grandson - will be one year old! I am sure he will not know the difference. Infact, he may be annoyed that his routine is interrupted by extra pictures and people singing off key to him. He is becoming quite the critic about things musical. In one recent video, he even gave his Dad a raspberry for singing chords near him. For some reason he does not like "chord" singing. What he does like is to "plunk" on a piano and make his own music. Both his parents are musically gifted so maybe he will be interested in music as well.

Sawyer's interests grow each day. He has come a long way since that cold, snowy night in Providence RI, when he entered this world. Words cannot describe the feeling you have when you hold your first grandchild. I can remember my mother holding my son, Scott when he was in the NICU. A frail lady, herself, she physically shook as she held him in a rocking chair. Tears rolled down her face as she told me to take him before she dropped him. She was more demonstrative with Scott than she ever was with me. She never passed a chance to gently touch his head or fingers.

I held Sawyer for the first time just minutes before I had to run to catch a plane at the airport. I had delayed my departure four days so I could be with Dawn when Sawyer was born. Because he was in the NICU, visiting was limited. Seeing your child with their first child is an experience you cannot duplicate.

When Ed met me at the airport in Nashville, I told him I had pictures! Pictures of Sawyer! Just 2 days old and oh! so beautiful. We sat in the car in the parking garage as he flipped through the pictures on the digital camera. We could not wait to get home to print them.

We got daily updates from Dawn and Greg. Dawn was doing well but had to leave the hospital without Sawyer. He had good days and a few scary ones. We prayed - oh how we prayed - and day by day Sawyer grew! The obstacles fell to the wayside and he became Sawyer!

He is a heart-melter that young man! Blue eyes that can melt your soul! And a devilish grin that makes you know his parents are in for some fun times ahead.

I have had many blessing in my 60+ years. But Lord, this one was a real doozy! Thank you for Sawyer. This is a scary world we live in today and I pray each day to keep my babies safe - Scott and Dawn and now this little one year old sweetheart- Grandpa's "Little Buddy"- Sawyer.

Happy Birthday Sawyer We do love you so!

Snow should not fall in the South

2008-01-31T06:02:00.000-08:00

I was raised in "snow country". Cleveland Ohio! When people whine about their snow - telling them I spent 19 winters in Cleveland usually shuts them up. Ah yes! "Lake effect snow". It snowed there from early October through April. Auch - the Easter Sundays I feuded with my mother over having to wear "galoshes" (rubber snow boots to you guys under 50 years of age!)
It really took the glow off your new fancy Easter outfit to top it off with clumsey big rubber snow boots ...(usually black or red for children).

Anyway, with the influx of people in our local community from Northern climates, I hear a lot about "How I wish we had a REAL snow" --- "I miss my snow". To this refrain I say -MOVE BACK TO THE FROZEN TUNDRA YOU BLOCKHEAD! THIS IS THE SOUTH!

This is the South. We drink "sweet tea", eat grits - not me personally- but they are immensely popular here, and swelter in the summer heat and humidity. We suffer through the heat and humidity of July and August for the priviledge of being in the South where we are not supposed to have SNOW and ICE! It is a trade-off and someone is reneging on their part of the deal. I remember the misery of 106 degrees in August - the sizzling leather seats in my car that required a towel to be able to sit without blisters. For that I was to be paid with a mild winter... not to include an icy driveway and icicles hanging from my clog-free gutters.

Today, my husband had to take detours to get to work and avoid mess where the ice had magically transformed our major road (41A) into a parking lot. I received a call at 7 AM from him saying - stay in the house - do not go out until I give you the all clear. These roads are a skating rink! Is he nuts? I would not walk to the mailbox if I suspect ice. Many of my bodily parts are failing- several are aching and I am not - NOT going to voluntarily put what remains intact in jeopardy of being mauled by an icy driveway.

However, I have a $5 coupon from Walgreens that is only good today and I have several things I wanted to pickup... life is throwing me a curve here. After all , it is a $5 coupon not one of those puny 25¢ coupons.

Another scary thing - we have good neighbors. Quiet, elderly ... good people. They seldom come out of their houses. Hermit-like. A scary thing happened this AM. I had the local news on the CBS morning show and all of a sudden - I see something familiar. Our back yard. It seems "Mr. Never Gets Outside" has a digital camera and had taken pictures of the accumilating snow and emailed it in to the tv channel. Innocent stuff however, Glad I was not out there hauling garbage to the can or something. I did not know he knew how to connect the camera to the computer. Beware of quiet neighbors!

So I will slow down, have another cup of coffee, start a load of laundry and write out some bills. All the while keeping an eye on the weather outside. Watching those icicles for signs of warming up.

Just to let the seasonal planners know, I expect a discount on my hot weather this year in August to make up for the day I had to endure less than "southern" weather in February. It's only fair.

OKAY! NOW I'M MAD!

2008-01-19T08:16:00.000-08:00

I work hard! At 60 it does not take as much to constitute hard work - but I think, by most standards, I do work hard at what I do.

What I do, is manage a small non-profit thrift store to raise money for individuals with mental retardation. Just two old ladies who refuse to say "uncle" and give up the job. We are open Monday-Sat 9-5. We sell stuff really cheap. Everything is donated and we do manage to sell a lot. As a mother of a son with m/r, I see folks who have many needs. Living on SSI -usually around $640 a month is not easy. We try to help.

Okay- back to why I am pissed. Last night the other old lady closed the store at 5 PM. She cleaned up, locked up and set the alarm and left. Shortly thereafter we got the call that the alarms had been activated. Because we have had some "alarm issues" lately, we were a little upset, but Dollie (the other old gal), turned around and headed back to the store. Where she found the doors unlocked!

Someone had hidden inside the store until she left and then "thought" they were going to rob us. WRONG! You see, we have motion detectors. As soon as they moved - BOOM! lights, whistles and bells went off. We also have video and although it is grainy - we see the bitch (sorry) killing time outside the store smoking a cig- until she could come in just before closing and do her thing.

My husband and I have watched this video until our eyes are ready to bleed. Time to call out our secret weapon! We have a friend in the AV dept at the local college and I am hoping he can take this tape and search it frame by frame then print off a picture of this battleax!

I remember my mother hating a childhood friend of mine because she thought her to be a petty thief! My mom would not permit this child in our home. "I cannot abide a thief!" she would rant. She was right - I learned later that the girl would steal the fillings out of your teeth if you left your mouth open as you slept! Yeah- she was bad. Now I feel the same way. I have never had to hide things in our home. I knew I could trust my children AND THEIR FRIENDS. We always left odd money or jewelry laying on the kitchen counter and no one ever bothered it. Things like feeling secure in your home is important.

ARC Thrift store is my second home - I want to feel secure there too. The locksmith will be there shortly to add advanced locks to our store. More keys - more buttons. I suggested going to Rural King and buying an electric cattle prod! Run it under the clothing racks each night. That should discourage thieves from hiding under there.

I hope that nasty person got a good scare when that alarm went off! I hope they crapped their britches! Lazy no good person needs to go to work.

**Notice to our thief!***
Flip some burgers - mow some yards! Get a life and get the hell out of mine! You violated my security, my right to feel safe in what I consider my inner sanctum. Go to work! You are no better than the rest of us and we are tired of having to look over our shoulder at your bad deeds. Yup! Cattle prod - put it on my list!

How Great Was Your Geography Retention?

2008-01-13T14:54:00.000-08:00

I do not remember spending a lot of time in school studying geography. I think the teachers hated it as much as the students. Maybe that is the excuse I am using to explain my pitiful score on a geography quiz I tried from my cousin, Maria's blog! http://apps.facebook.com/travelpod-challenge/.

I thought I would try it once - she said she completed level six and her husband got to level 10 - well we will not discuss my levels. Suffice it to say, if I hit the right hemisphere I felt successful. Why I kept confusing France and Spain befuddles me and I spent 3 years in Germany so I should definitely know that. Maybe their map is colored wrong - Germany was blue I think in my elementary school textbook. Yup that's it! Wrong colors! Think I am grasping at straws, try this little fun test - see if YOU know where the DRC is... good luck!

Procrastination Stinks!

2008-01-12T15:28:00.000-08:00

Okay - so I have a grandson. I have made that abundantly clear. I found the perfect gift for his first birthday --oh, sometime last Fall. It was in an L L Bean catalog. I considered ordering it and having it ready for February 12 when he will be the "BIG ONE". Nah - it is large and heavy and I did not want to mess with shipping it twice.

Knowing what I know now, I wonder WHY I did not have it shipped to my daughter and tell her to shove it in the basement until February! It is not like she does not have room AND since my grandson is not very mobile, it is not like he will venture down the stairs to the basement to hunt for future gifts.

Bottom line, I did not order it, and LL BEAN will not carry it until the Fall. I called "Joan" at LL BEAN and confirmed that it was not available. She knew what I wanted because she said she had many calls wanting that item. Now, that raises another issue. Is retail not in the business of selling stuff for profit? If you do sell toys all year, and you know certain items are big sellers, WHY NOT STOCK THEM ALL YEAR? Have we created plethora of companies who thrive on the short sell? Create the demand and then deny them access to the merchandise?

Just look at this face, (so okay, he is a little ham when a camera comes out!) does he not deserve my first choice for a birthday gift? I have found an acceptable second choice - took no chances and ordered it and had it shipped to MA. He is too little to know it is not the first choice; but I will always remember that I could not provide the perfect gift for Sawyer on his first birthday. Next time little guy - You will get first pick!

Storms bring out the loonies!

2008-01-10T15:02:00.000-08:00

We were under a tornado watch for much of today. Weird for Tennessee in January- but it has happened before so it should be taken seriously. The skies were black and lightening crackled overhead. Rain was coming down so hard you could not see across the parking outlot outside the store where I work. I had no plans to trot outside. It seemed silly considering the tornado sirens were wailing from Austin Peay a few blocks away.

And yet, in the middle of the mayhem, I had customers who wanted to bolt outside to get back to work on time. WHY?? She was a government worker at the court house that never cared about being there on time any other day! Yet in a tornado inspired downpour, she bolts outside and tries to manage her packages, car keys and umbrella. Not pretty.

We stayed pretty close to the ladies bathroom that we had determined to be the safest, interior room. Besides, if we were to be trapped somewhere, being near the "facilities" would be a bonus.

Two hours later, the skies cleared a little, the rain slackened and one by one we ventured home. The city street workers discovered why they should have cleaned the leaves out of the storm drains during the pleasant fall days instead of waiting until a river flowed down 3rd Street. Ah! Procrastination. I fought the impulse to point and snicker as they stood in the rain and pulled assorted debree out of the street drains. Sorry guys- that is the price you paid for sitting in Dunkin's drinking Coolattas in Sept instead of cleaning up the streets!