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

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 !!!

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!