Sunday, May 20, 2012

D Day 4

All day I kept looking at the date and I had a funny feeling that May 20 was supposed to be significant. Maybe it was my friend's anniversary yesterday? No, not it. Maybe it's Tim and Natalie's anniversary tomorrow (!)? No, not that.

I remembered tonight. It was Diagnosis Day. May 20, 2009 was the day that a doctor nonchalantly handed a piece of paper to Bob while he was visiting Dean in the NICU and he said, "Oh, your baby has Prader-Willi syndrome."

Deep breath.

We'd been prepared for this for a few weeks, of course, because of the amazing geneticist who at 2 days old, clinically diagnosed Dean with PWS. So it wasn't completely out-of-the-blue anymore, but seeing it on paper released a new level of reality into our lives. The original post is here.

(As an aside, it's funny seeing me write that Dean had a more mild kind of PWS. This was based on what I was told about his specific subtype (deletion) when he was born. I've since learned that you really can't tell based on subtype where someone will be on the spectrum of PWS, and that Dean has certainly not had a mild case so far.)

Here's what D Day was:

Dedication Day - we were in love with Dean before he was even born, and we knew when he *was* born that we were with him through whatever it was that he was dealing with. But upon finding a diagnosis, we were officially dedicated to knowing more about PWS and how to give Dean the best life possible.

DNA Day - I know more about what missing the 15.q11-q13 segment of your DNA does than I ever would have thought possible. I studied the chromosomal report so thoroughly and tried to figure out what it might mean. Try as I did, there were no answers in the piece of paper in my hands. But it was still real.

Dean Day - This was about us, but mostly about Dean. He was a sweet, sweet (still is!) baby and he hadn't changed now that someone told us about an abnormal pattern in his DNA. He was and is still our Deano, our son.

Here's what D Day wasn't:

Death Day - Dean's medical situation had not changed even though we knew more. We could put to rest the other diagnoses that doctors had floated around that were far worse and definitely would have taken Dean's life at a young age. We knew our baby would live.

Despair Day - I sobbed that day with a sadness that was deeper and sharper than any other I've known. I was so desperately sad that our baby was going through this. I wanted to save him. But this was not a time for despair. It was a time to look to God, who was not surprised that Dean had Prader-Willi syndrome, and find hope there for Dean, and for all of us.

Desperation Day - While it was difficult to receive any diagnosis in particular, something about having real, concrete information about Dean's (and our) reality was settling. Once I had the cry of my life, I went to the NICU feeling empowered, eager to see Dean, ready to fight the battle with him. I had an abiding peace that gave me strength to begin the journey.

Divorce Day - You've probably heard the statistics about couples with a child with special needs and the high divorce rate (the figure I usually hear is 80%!) related to that. Bob and I have processed our feelings about Dean and PWS in very different ways, but we have done it together. That day, we enlisted each other's help as a team more than ever before, and I truly think it's brought us closer overall. I am so thankful for such a wonderful partner.

I would encourage you to ask a parent of a child with special needs about what D Day was like for them. It's almost always a powerful story.


Candice said...

Joel and I are more of a team than ever before as well. Aren't we lucky?

This is a great post, as usual!

UberFilipi said...

This is a very touching post. Thank you for sharing some of the feelings of that day with me.

Ali Foley Shenk said...

Candice, we are so lucky!!