Will’s Way, Life with Cornelia deLange Syndrome

Mark, Will, Grace, Rachel, Beth and Leah.  Christmas Eve, 2006

This is a funny picture of you.  Normally trying to capture you on film is much like capturing the loch ness monster on film.  If we do get you, you hardly look into the camera and don’t stand or sit still for more than a nano second.

 Well, on this night Grace and her friends were getting ready for a formal dance and everyone was taking pictures.  “Hmmm…pretty girls in pretty dresses…I think I need to be part of this” and you walk right over to the girls and turn for a picture. 

The state approached us with a project they have in mind for you:  the creation of a residential home for individuals who will soon be aging out of the school system.  Nancy Weber immediately thought of you, along with Austin and Robert, to fill this new home.  The project from first meeting to move in day could take 2 or more years. 

 Dad and I feel the timing will be perfect.  It’s the natural age you would have moved out had you not been born with a syndrome.  You will be ready to make your life your own and to have time away from us.

It will be hard to let go.  Who will love you as much as us?  But in the long run it will be best for you.  Some day we won’t be here to care for you, you need to have your own life established without us.

 We will make sure it is near perfect for you, and that you will be extremely well cared for and most importantly, happy.

This weekend we said goodbye to Lisa.  Heartbreaking to see your friends hurting.  Heartbreaking to relive the early, raw grief.  Heartbreaking to know that your turn will be coming.

Frank and Julie are amazing people who have changed the world for people living with CdLS.  There’s no way to repay them for making our life easier.  I just hope that we can pay it forward.

 So good to be surrounded by CdLS families.  We go about our daily lives doing what we do because we have to.  There is something magical about spending time with those who truly know.  It gives me such strength.

Will’s health problems persisted and brought us to Boston Children’s Hospital in early December to see our beloved Dr. Fox, his GI doc.  He ordered an abdominal ultrasound, upper endoscopy and an esophageal dilation.  The ultrasound was normal.  Endoscopy revealed inflammation up and down the length of his esophagus and throughout the stomach area.  Pathology results from biopsy were non-specific inflammation.  No yeast, no infection.  Dr. Fox thinks it was because his Nissen had become so tight which had an impact on the motility of his esophagus.  We doubled him up on his Prilosec to help with the stomach inflammation and hopefully the dilation will help the esophagus.  He continued to be in pain at home so he had a CT  of his pancreas to check for pancreatitis.  So far the results from that were negative.

Fortunately, just a few days before Christmas the pain seemed to suddenly stop and Will has been much better since.   At this point there is no need for round the clock pain medication.  Dr. Fox wants him off of ibuprofen because it is a stomach irritant so we only have Tylenol to use in the pain battle.  The reprieve from pain is so nice to see.  He is such a different person when he is feeling well.

His eating and swallowing is better…although starting to eat enormous amounts again.   This is always troubling.  He gets food obsessive.  Thankfully he doesn’t grow at the rate that he eats.