Special!

 Every time we arrive at Wolfsons for a special procedure. I am reminded of the battle many face ongoing in the rare disease and special needs community. A mom who tirelessly fights, instructs, challenges and protects on behalf of her child. (Dads too play apart here) We are here for an MRI of spine to see how bad the damage is on Tommy's spine/neck. An  xray back in the fall revealed subluxation on his C1 and C2. There was what appeared to be a lot of slipping. (as best they could see) The MRI is a better-clearer picture of what could be a problem. Today will determine how serious is the damage and if surgery is needed. Big head little body for so many years.(Go figure)

 

Mmmm. Gas makes me talk funny

  We have to be the first procedure, because RSS kids tend to be hypoglycemic and are at risk in fasting situations. This mom has a set of gloves labeled "special procedures".  Although very good at what they do at Wolfson's, they lack experience, and understanding, to give the support a mom like me, and he needs. They argue EVERYTIME over this very important need. I'm starting to win..
insistent that we give him fluids immediately. This early morning was no different, except that our nurse happened to be a PVPV mom who attends another local church. The head nurse was dogging me behind my back. BTW: I heard every word you said and yes I documented it. You really showed behave more professionally when mom is in the next "stall" and can hear you. HELLO......

I want DR Helfrich....he says.

 

 

   Little man is known now at special procedures. They think he is something else. He is special! I agree.  Unique and special with alot of special procedures due to his rare genetic disease he was born with. His miss-diagnosis locally has caused a back up off catch up procedures this past year. Teeth issues, pop-corn seeds in nose canal. Nothing is simple with him. It's always special. The dictionary says special is: better, greater, or otherwise different from what is usual.  Yep; That is Tommy and ever-other RSS kid in the country, well honestly all our special needs kids.

Other special needs friend. Josh

Pre- procedure physical yesterday

 The last few years has opened my eyes and heart to the very unique journey of moms with kids with disabilities and rare disease. Everyday challenges that are emotional, financial, and physically draining at times.  Unique and special is this walk and one that was ordained for us to do. If your tired today, tapped and need a reminder. You can fight this fight and win the race. You have one going before you and working on your behalf. Don't give up in the daily fight, tap into him and allow him to help you. Lean into the others who have gone before you. Thanks Ally, Amy, Heather, Stacy, and RSS moms who help me to know we can stay in the game and make a difference.  Where ever you are on the journey you and your child are special! Stay in the game and remember you are not alone. EVER..... May his peace keep you.