Today I’m pleased to introduce you to special needs dad Matt McNeil. He and his wife Shannon are the parents of two children with special needs: Waverly (8) and Oliver (5). Over the next few days, Matt will tell you about his experience as father to two children with terminal special needs. Today, he shares his family’s story.

Matt, would you share your special needs dad journey with Different Dream readers?

It all started when our son, Oliver, failed his newborn hearing screening before we left the hospital.  His big sister, Waverly, had been falling behind her peers.  A dreaded developmental delay.  Since Oliver’s hearing loss was genetic, we had her tested, and we thought her hearing loss was the cause of her problems.  It soon became apparent that she was affected by more than a hearing loss.  Soon came another round of testing, which ended with a doctor in Philadelphia telling us that Waverly had MPS III, also called Sanfilippo syndrome and that she was not expected to make it out of her teenage years.  Sanfilippo is a genetic condition, so this time Oliver needed a follow up test.  One month later we learned he had it too.

Sanfilippo is considered a storage disorder, meaning that kids with MPS lack an enzyme needed to properly break down naturally occurring sugar molecules. Since the molecules cannot be disposed of properly, the body deposits them on healthy cells, damaging the cells in the process.  The brain is the most affected part of the body.  With each passing day, more and more cells are damaged and nothing can be done to stop the progression of the disease.  Affected children seem quite normal at first, but eventual fall behind their peers.  That’s basically the first stage of the disease.  The second stage is marked by increased hyperactive behavior, including inability to sleep, gradual loss of skills such as ability to focus, to speak, even to feed themselves.  In stage three, Sanfilippo kids begin to slow down, losing the ability to walk, swallow, or communicate.  Their intellectual capacity is so diminished at this phase that their developmental age can no longer be tested.  Life span varies.

How are you experiencing grief now? How do you cope with it?

We experience grief in waves.  The initial shock of the diagnosis passed a while ago (we were diagnosed in 2008), and we are able to function like a normal family for the most part.  But even if the wound isn’t as raw or near the surface, the pain of losing our kids to Sanfilippo syndrome is something we carry with us everyday, it informs all that we do in some way, and it can surface abruptly.  One of the lessons I learned is that Sanfilippo is not happening to me.  I am affected, but secondarily.  It is Waverly and Oliver who live with Sanfilipp and are being taken away but it.  This is how their one and only life will play out.  For the longest time, I didn’t appreciate the subtle distinction between sorrow I felt at what I was losing–my kids–and the anguish I felt purely for them and what they were going through.  As we’ve matured in our pain, it’s become much easier to focus on Waverly and Oliver.

In a way, I cope with grief by letting it take me where it needs to take me.  If I feel sad, I let myself feel sad.  We have strategies for not letting it consume us.  For me, writing is a major cathartic force in my life; it doesn’t make everything better but the expenditure of creative energy is a great way for me to channel grief and make it constructive.  Perspective is important too.  I only have today to make a new memory with my kids.  Am I going to take that opportunity to make that memory or do I just want to remember the sadness of today?  As long as my kids are still with us, that question is a powerful reminder of how we want to help them live their lives and how we want to live ours with them.

Help Welcome Matt to Different Dream

Matt and his family have quite a story, don’t they? Tomorrow, he’ll be back to tell about their amazing friends who elevated the idea of a support system to a whole new level. Their act of generosity is mind boggling, so be sure to come back and read about it. In the meantime, help me welcome Matt and his family to Different Dream by leaving them an encouraging comment if you wish.

Part 2
Part 3

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.