Monthly Archives: May 2015

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

a happy, positive, crazy lady, with plenty to cry about.

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As I got into the car, I found myself weeping. I was glad there were no witnesses that might decide that it was finally time to check me into an institution. Why was I reacting with tears? I had a armful of flowers and lipstick smudges all over my face, marking the love of my friends and family. I’d done it. I’d managed to share my story with an audience without completely crumbling. There was a little crying, a few long pauses and some questionable ad libs, but I’d done it. Yet, there I was, sobbing and then cackling all the way back to my house. The five minute drive from the theater, with it’s manic mix of tears and laughter, might be an accurate description of who I am. I’m a happy, positive, crazy lady, who has plenty to cry about.

I’m not masking dark pain with my smile when you meet me. I’m genuinely a cheerful person, and when I say things like, “I’m lucky” I mean it. I won’t trade my life with any of you. I’ve been married to my best friend for almost 20 years and we’ve made two extraordinary children. Yes, I wish their lives were not touched by ALD, but I am grateful that they are each doing so well. We are surrounded by friends and family who hold us up when we need it and are always ready to celebrate the good times (the after-party ended at 2:00 am on Sunday morning). This crew is also an incredible assortment of interesting, loving, talented people who I’m honored to know – the cast of LTYM is a welcome addition to the pile. Our town, our house, our stuff — that’s gravy.

The challenges our family has faced have been horrific, but we’ve survived and managed to create a life that works. We are thriving and healthy(ish) and we don’t waste too much time focusing on the negative. I admit to acknowledging it occasionally (like releasing a poison – worried that if I don’t, it might kill me), but quickly try to go back to enjoying life. I hope the piece I shared on Saturday showed both sides of our family. It was about a reoccurring dream I have where Jack starts speaking. Not having heard Jack’s voice for seven years is the sad part of the story. But, if you can wipe away that detail, the story is about a family who has dreams that might never come true, but gets up every morning and enjoys magical smiles and laughter. THAT is the story I was trying to share.

I think the tears in the car were my letting go of the WHY I had a story to share and the laughter was that I shared the FUCKING STORY!! I also think the wild emotion was a result of adrenaline, exhaustion and that I am a little crazy.

Anyway — It’s over. Listen To Your Mother was one of the coolest experiences of my life. Not just getting the opportunity to share a part of myself, but being in a cast full of talented, amazing people and being part of something so much bigger than our individual stories. It was celebrating Motherhood. Motherhood is full of dreams, disappointments, tears and tons and tons of laughter. Thank you to everyone who came (and for everyone there in spirit) and for all the support and encouragement. Now, I promise to stop talking about it;-)

Love, Jess

One last thing — SOPAC has a Green Room and dressing rooms with lights around the mirrors. So cool.

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