February is a big month around here!

By: Owen

February is a big month around here.  My birthday (1st), Justin’s birthday (Owen’s daddy -3rd), the anniversary of our first date (4th), and Valentine’s Day.  In addition we have the anniversary of Owen’s diagnosis (also the 4th) and Rare Disease Day, today, the 28th.  In a leap year it’s on the 29th, the rarest day of all.

I spend a lot of time thinking about life when February rolls around.  I think about the past, like our first date, what would we have done if we’d known what the future would hold?  If we’d had a Crystal ball that could tell us 13 years later we’d find out our baby has a chromosome disorder, would we have fallen in love or decided that seemed a little too hard?  It would have been a shame to miss out on all of this.  I think about birthdays past and future.  Justin and I always talk about the last year, what made us happy, and what we hope happens over the next year of our lives.

Every February 4th, I think about the day we got Owen’s diagnosis.  It’s one of those moments that changed my life in so many ways.  I’m a different person than I was that day.  I hope that means I’m a better person.  If I am, it’s because of being Owen’s Mommy. I’m better because of the things I have learned from him.

Owen has taught me to just let go and have fun.  If we are laughing and having fun together, it really doesn’t matter what other people think.  Being “normal” is boring anyway.

Every occasion is an opportunity to dance.  Your favorite song comes on at the salad bar?  Dance!  It’s a sunny day when you leave school and it feels like spring?  Dance!  There is nothing that can’t be made more fun by dancing.  Our family has gotten some funny looks when we’re out dancing together, but who cares?  Owen sure doesn’t.

If a plumber in a red shirt and overalls can be “Super,” then anyone can be.  Owen loves Super Mario, an unlikely hero to be sure.  If Mario can win the love of a princess then we can all reach for our dreams.  I want him to know we are here to help his dreams come true.  I’ll fight for him with everything I have.

Sometimes the things that you have to work the hardest for are the most worthwhile.  It’s really hard to watch Owen struggle so hard to do the things that seem easy for other kids.  He didn’t walk until almost 2 years old, he didn’t really start talking until he was 6.  At 8 1/2 he still struggles to process what he wants to say.  He doesn’t like to do his writing assignments at school and often they send it home for us to finish.  But last night while we worked on his reading journal he came up with such a creative answer to one of the questions and it was amazing to watch him light up with pride.

It’s important to let your guard down.  Recently Owen has started asking me to tell him a story while I tuck him in.  After the lights are all turned out and we are snuggling, he’ll just suddenly shout out, “A Story!!!”  I don’t have any trouble reading to him, I’ll even make up voices and be totally silly.  Having to make up a story out of my own head is very different.  I realize that he doesn’t need my story to be as good as the books we read, he just wants to keep spending time talking with me.

I don’t expect Owen to be perfect, I just expect him to do his best.  That has allowed me to be more gentle with my expectations of myself.
Every year this time I think about when we got Owen’s diagnosis.  I felt so alone. Chromosome 18q- is rare, a 1 in 50,000 diagnosis. I know everyone likes to think their kid is one in a million but this is not what people usually mean by that. I felt like I’d never meet anyone else that could relate to what we were going through.  Then I heard about Rare Disease Day,I looked it up on the internet and learned that 1 in 10 people are affected by a rare disease.  Suddenly, I didn’t feel so lonely.
I know I’ve said this before, but it’s worth repeating. Yes, Owen has a “rare disease” but that isn’t what makes him special. It’s far from the most interesting thing about him. People aren’t statistics. He loves to dance, play dress up, and host hat fashion shows. He enjoys sneaking up on me when I pick him up from school, shouting “Raaahhhh!!!” as he comes through the doors and springs on me. His current favorite food is pizza.  He wants to be a dancer, actor, musician, or Youtube star. His class voted him Valentine King this year. We play board games, sing Karaoke, and have living room dance parties. I guess he IS one in a million after all.
Sometimes people feel sorry for us.  I wish they knew that our story isn’t one of tragedy.  It’s more like a comedy with a few plot twists.
On this rare disease day, I am blessed to love someone rare.  I wouldn’t have him any other way.

One Comment

  1. Katherine October 20, 2020 at 9:19 pm - Reply

    Hey Owen! Thanks for sharing your story, I loved reading about your life! My name is Katie and I’m the VP of Marketing on the Eboard of Cameradery. Cameradery is a photography program where you partner with a Cornell student and do various photography projects together. Your work will be displayed at the Positive Exposure gallery! We are so excited about this program and would love for you to be a part of it. Please let us know if you are interested! You can contact us at cornellcameradery@gmail.com or fill out this survey indicating you are interested! https://forms.gle/WuqQ85wEsio6AMJt8

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