Why him?

My son was born with a health condition that he is going to be challenged with his entire life.  Whew - I said it.  That's our dark, dirty secret.  It's the information that I share with selective family members and close friends.  It's on a need-to-know basis, and so far, we've found very few people who need to know.  I won't go into more detail about his health condition; this IS a public blog and the information will be his to share publically when he's older, or to decide not to share at all.  

We knew at my 36 week ultrasound that something wasn't right.  We didn't realize just how bad it was until he was about 8 months old.  For the past 26 months, my husband and I have asked each other "Why him?", "Why us?", "What did we do to deserve this?" and we don't have any answers. How is it fair that this loving, brilliant, gifted, perfect child has been given this to deal with in his life?  And how are we supposed to talk to him about this and let him know that his life may not be as long as ours?  We don't have answers to these questions either.

I've asked God "why" so many times that, like all parents, He's probably tuned me out now. He's not interested in answering that question for me...at least not yet. 

It wasn't until recently when I started looking back at all of the events leading to now, and thought that maybe I was seeing it all wrong.  Instead of thinking about why God would take my son away from us too early, maybe I should be grateful for having any time with him at all.

If the doctors hadn't ordered the ultrasound at 36 weeks and caught the first sign of an issue, one or both of us wouldn't have survived the delivery.  But they caught it.

When my son was born, he couldn't breathe or eat and was sent to the NICU for a week.  If the nurses and doctors at Lehigh Valley Hospital hadn't taken helped him, he wouldn't have survived the first hours or days of his life.  But they did.

So I have him....for now.  I know I'll still ask "why" and I don't expect an answer.  But as we share more with family and friends, I also know that the volume on the prayers is getting louder.  If love and prayers can heal, then my son will be ok.

Discovering who are true friends are

There are times in our lives when we realize who around us is really important in our lives.  For me, it often comes in times when I need help or when something has gone horribly wrong in my life.  My family has had to face a "road bump" over the past two weeks - certainly not the first or the last one for us - but unexpected and poorly timed all the time.
It's in this time, that I've realized how much family and friends care about my family - and seen which friends are the ones I can truly count on.
On the two hour ambulance ride from Pocono Medical Center to Children's Hospital of Philadelphia, it was my friend Heather that I was texting for support.  It was Heather who texted me every few hours over the next three days while I camped out in my son's hospital room to check in, and send him a Sponge Bob balloon that showed us the first smile we'd seen in days.
It was my friend Courtney who sent me messages to check in, and helped my co-workers send a bunch of balloons to my son when we were sent home from CHoP.  My friend Kelly sent a "Not Bored Anymore" jar from Land of Nod full of crafts and activities to keep my son entertained.  My parents and father-in-law all sent books.  My sister and her husband brought coloring books, puzzles, and movies. My fabulous sister-in-law thrilled my son with a box of stickers and toys. My friend Carolyn stopped by with toys, and then with a delicous homemade dinner for my family.  This doesn't even take into account the text messages and emails that we get daily to check in and see how we're doing. And it's not about what people brought or sent - it's that so many people took the time to show that they care and to give support to us. 
This is amazing to me, because for years while living here, Joe and I found it so hard to make friends as adults.  Sure, we had friends from work, but nothing like the friendships that we had and saw our parents have as we grew up in a small town.  But now I realize how wrong we were.  We do have a support network here - it's just sad that it takes a bad time to show us the good.