Happy 11th Birthday, Willy!

Tomorrow Willy turns 11.

Holy Cow. Willy turns 11 tomorrow. It’s almost unthinkable! I go through periods where I don’t like to reflect back on how this journey started because it was so sad. Tiring. Depressing. Overwhelming.

How about just plain shitty? OK, let’s go with that.

I’m going to reflect back this year.  I’m in a good place where reflecting back doesn’t hurt as much.  In fact, it kind of feels good.  Cathartic.  As in a “look how far we’ve come” sort of feeling. It feels like progress.  Damn hard work but progress nonetheless. 

Willy was born on March 12, 2004 after a very normal pregnancy.  I was not very sick and the pregnancy and delivery were both routine.  When he arrived, he came quickly.  He was not breathing when he came out so the nurse bagged him with some oxygen. In and of itself this is not abnormal – many babies need help breathing when they leave the safety and comfort of the womb.  

We now know this is one of the early indications that something is wrong.

My grandpa passed away in July of 2004.  My brother and I drove down to Florida with Willy to attend the funeral.  While we were on the trip, Willy started doing some weird twitches. He had also been having problems tracking with his eyes. We didn’t think anything of it necessarily; I just made a mental note to check with the pediatrician when we returned to Michigan.

We now know these were more early indications that something was wrong.

July 9, 2004.  Upon our return to Michigan, Willy had a grand mal seizure while he was home with Todd and Grant.  I was in Ann Arbor at work and they were in Jackson.  The call you never want to get.  Todd calls me at work and says they are taking an ambulance ride to the hospital because Willy had a grand mal seizure. I’ll spare you the details of me driving to the Jackson hospital.  It wasn’t pretty. 

Fast forward later that day to the University of Michigan Emergency Department where he was immediately taken for an MRI.  The ED room was full of friends, my brother and sister-in-law and we were all hopeful it was a fluke.  A fever seizure.  (Even though had no fever.)  Something in the water that day.

Please God let it be a fluke. 

However, we were informed by the attending physician that he had lissencephaly and it was terminal. We were told he likely would not make it to two years old.  We were told we’d need to spend some time inpatient so his seizure activity could be monitored and treated accordingly.

What the Actual..... ?? 

After the deer in the headlights stuff cleared, Todd and I got with the program.  I'm cutting out a big part of our learning curve but trust me, it wasn't easy. But neither of us were really the “woe is me” sorts so we just took him home and started trying to figure things out.  There have been ups and downs but where we are now is really good.

A lot has changed since that day. #understatement  

But what has not changed is this absolutely perfect love we all have for Willy, our commitment to keeping him happy and healthy, and making the big decisions with his best interests in mind. Whether we have one more year with him or 11, this commitment will remain.

Happy Birthday, Willy. You are loved more than words can say.