Category Archives: birthday

jack knows how to party;-)

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DSC00407It’s been a long week. Saying good-bye to Bananz and then trying to get ready for a month away on Block Island — okay, I realize that this doesn’t sound like a particularly awful week. It’s just been a little cluttered and frantic. I’ve been feeling overwhelmed.

When I remembered that I needed to plan a birthday celebration for Jack before we headed out of town, I was less than eager to add to my stack of to dos. Luckily, Horizon High School (HHS) is a place that appreciates a good party as much as our son does. “Planning” a party at HHS simply requires a few texts with Monica (Jack’s aide/ AKA his school mom) and a phone call with his teacher, Mr. David. Add some pizza and a cake from Maria AND YOU HAVE A PARTY!

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With One Direction playing, Jack danced his way around the classroom passing out hugs as party favors. You’ve never seen a teenage boy as happy at Jack. Every time I walk into his school I feel so lucky that our family is part of their community.

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Jack’s school mom, Monica. We love her.

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Maria and her beautiful daughter. Maria doesn’t just make delicious cakes, she’s the reason I’m sane.

For an hour, I got to forget about all the things I need to get done before the ferry takes us to our August home. Now it’s time to go back to the shopping, packing, re-packing, bill paying, cleaning up, etc.

Love, Jess

happy birthday jackO!

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FullSizeRender-38                                                       JackO enjoying his Birthday Cupcake

Day + 2922 (417 weeks/8 years/half of Jack’s life) . . .

Most of us have one birthday, but Jack likes to be different. He has two.

His first birthday marks the day he came into the world. Eight years later, Jack was born again (not in the Christian sense of the word – THAT he hasn’t done yet).

Eight years ago, we sat in room 505 at Columbia Presbyterian while doctors added a small bag of cells to Jack’s huge tower full of medication. It took less then 30 minutes for those cells to enter his veins. We watched and waited, while listening to music (Dan has a playlist for every occasion). It was remarkably uneventful, but it was the beginning of Jack’s life post-ALD.

Like so many life-altering moments, I remember every second of that day. I can’t tell you what I made for dinner last night, but I can tell you what I was wearing eight years ago and I still gag when I recall the smell of stem cells (who knew?). I also have that confusing feeling that it was just yesterday that we sat in that room, but I can’t really remember much before that day — as if our family started on May 30, 2007.

Eight years ago, if someone had sat me down and tried to describe what our lives would look like now, I would have strangled them. I was so sure that we would somehow return to lives that mirrored our lives before ALD took hold. It didn’t matter what I read or who I spoke to, all I could imagine was a family that looked like a family should. Now I know that families come in all sorts of different shapes and sizes, and that happiness is attainable under the most complicated of circumstances.

So, I’m glad I didn’t know. I would have been heartbroken and would have wasted time worrying that we couldn’t manage. Instead, we grew into our new lives and little by little have found a way to make it work. We are strong and happy and thriving. We celebrate Jack’s 8th Transplant Birthday today with plenty of smiles and grateful for all the duct tape that holds us together.

HAPPY BIRTHDAY JACKOOO!

Love, Jess