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Monday, April 22, 2013

Happy Birthday, Ella Grace

On the eve of Ella's 5th birthday, I am thinking about where we were at this exact moment five years ago. I went into labor around 8:30 in the evening and we went to the hospital. We were already aware that she would be born with some type of genetic issue or syndrome based on the findings of an ultrasound I had at 26 weeks, but we didn't know exactly what it was or how she would be when she was born. Since I had spent the past 10 weeks Googling every syndrome known to man, I had had a good amount of time to get used to the idea of having a special child, as much as that is possible anyway. I think the pain of labor did a good job of keeping my mind occupied, and at that point we were just ready to "know".

It wasn't until 4 o'clock the following afternoon that the doctors announced she would need to be delivered via C-section and less than an hour later she was finally here. I remember immediately asking John, "How does she look?" but can't for the life of me remember what he said. I got a quick glance at her in my drug-induced stupor and she was whisked away to the NICU while I was banished to my hospital bed unable to get up due to the surgery.

Now, I understand that doctors often err on the side of "worst case scenario". I guess it's at least in part so they don't imply false hope and to cover their own behinds, but our neonatologist did not have many good things to say when he finally came to my room and delivered the news of her diagnosis. I was handed computer printouts about Cornelia de Lange Syndrome (www.cdlsusa.org) and given a laundry list of the medical problems they had already noted and more they anticipated. All I can say is thank goodness for that little button that gave me more pain medicine when I pushed it. Well, that's until some time in the middle of the night when my epidural slipped out...but that's another story for another day.

It wasn't until the next morning that I really got to meet her for the first time. They wheeled me into the NICU and I saw my tiny, hairy, beautiful baby with a gazillion wires and tubes coming out. At 5 lbs. 1 oz. she was actually a decent size considering her diagnosis and the fact she was a few weeks premature. Despite everything they said was "wrong" with her, she was beautiful. And she was mine. I knew she was going to be okay and that was all that mattered.

Birthdays are always an emotional time filled with a lot of conflicting emotions. I'm so honored to be her mother. She has been through more medically than most people will experience in a lifetime but you would not know it by looking at her. She has a smile that can light up a stadium. She brings so much joy to everyone who knows her, and even to many who have never met her in person. She is honestly the happiest human being that I have ever seen and I could not be more thankful for that. She is resilient beyond belief. She has bounced back from the verge of death on more than one occasion. She endures constant hospitalizations with people poking and prodding and examining her. She smiles at them all. I know that I am biased, but there is just something about Ella. She leaves an indelible mark on everyone she meets and people do not forget her.

But if I'm going to be completely honest about this life with her, I have to talk about the conflicting emotions that come along with having a special child with exceptional needs. Every year that passes, the gap between Ella and her typical peers widens. As a parent it is hard to watch. Not for her, but for me. I know that it is purely selfish because SHE is happy. She doesn't understand all of the things that she doesn't get to do. I really try to not linger there, but I would be lying if I said those tinges of jealousy don't pop up every now and then.

Last week I went looking for a gift to give to her at the party we held this past weekend. The truth is, I could wrap up a toy she has had for years and she would smile just as big when we gave it to her. But I want to be able to get her things even though she doesn't need them or even understand the concept of getting a gift. So I found myself browsing the infant toy aisle for the fifth year in a row and I had a moment. It was obvious upon checking out that I was buying a birthday gift and I was dreading the cashier asking me whose birthday it was and how old she was going to be and imagining the look on her face if I answered honestly that she was turning five. Thankfully that didn't happen.

The occasional pity party is inevitable I think. The trick is to not linger there too long. Accept reality and move on, and above all COUNT YOUR BLESSINGS. I even get angry with myself for going there when I'm fully aware that she almost didn't make it to her 5th birthday and what a gift it is that she did. I know far too many parents who have lost their child and I have to keep it in perspective and cherish every moment. Tomorrow isn't guaranteed for any of us.

I have always loved celebrating any occasion, it's my nature. Anyone who knows me knows that I love a party! So for Ella I try and go all out and make it a true celebration with lots of family and friends because it really is a big deal. It's also a chance to thank those around us for their support of Ella and our family, and we are lucky to have so many people to thank.

The first time I saw Ella in the NICU


Ella Grace at her 5th birthday party this past weekend

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