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Sunday, May 10, 2015

Listen to Your Mother show

On Thursday night, I participated in Little Rock's Listen to Your Mother show. It was an amazing cast, an amazing experience, and I am so honored that I was even allowed up on stage with the other 12 people. I had a great time getting to know them all (and getting so distracted by each other that we got stuck in an elevator), and all of their stories will remain with me.

LTYM is in 39 cities across the country, and there will eventually be a YouTube video of my talk. But that won't happen until mid-summer. So for now, I'm posting my talk so you can all read it. Happy Mother's Day, and enjoy!!

"Two Mothers"

I am two mothers.  I am a special needs mom, a label I never imagined I would have.  And I am a “typical” mom.   I am as comfortable with pulse oximeter readings, feeding tubes, and seizures as I am with play dates and the complex rules of toddler sharing.  It’s a complex balancing act that requires both children to have a little less of me, but isn’t that true of all mothers of more than one child?

I became a mom in August of 2010.  What should have been one of the happiest days of my life quickly turned frightening when Cooper wasn’t breathing well.  Plus, he was born looking just a little different than a typical baby: enough that he was almost immediately tested for genetic variations, but not enough that anyone could pinpoint what, exactly, was wrong.  Cooper was rushed to the NICU to be fed and breathed for, and we went into a holding pattern until his test results came back.  We discovered, a few days later, that he has a random, genetic mutation.  He doesn’t have a defined syndrome and his deletions and duplications are so rare that the doctors could literally tell us nothing about what we could expect for his growth and development.  We were, and still are, flying blind.

Cooper is now four and a half.  He’s been hospitalized 22 times, been in the ER 20 times (8 of those visits were in a six month period), and has had more than 10 surgeries.  He has 12 separate diagnoses, from chronic lung disease to infantile spasms, and we see 14 subspecialists.  It’s quite an ordeal.  

But Cooper is happy, and I’m thankful that Cooper is happy. Even though he can’t tell me that he is happy, the signs are all there. He smiles, he laughs, he’s ticklish, he gives the best hugs, he loves to snuggle. Plus, of all the consonant sounds he could make, the only one he says with regularity is mama.  I’m thankful to be loved like that.

In the midst of all this craziness, we decided to do something even crazier: I got pregnant again.  We found out at eleven weeks that we were having a perfectly typical baby boy. And my reaction to this news was that of terror.  I was just figuring out how to navigate the complex world of Medicaid, seizure medications that had to be ordered from other states, and early intervention preschools.  What was I going to do with an infant?  One that was going to be rolling over and sitting up on a pre-defined schedule?  How was I going to deal with an infant while going to bi-monthly doctor appointments?  And then, he was going to grow up!  He was going to talk, and have opinions, and throw tantrums.  I was definitely not ready for any of that.

But you know what happened?  I figured it out too.  And Semmes, my precious second son, did everything early.  He sat up at four and a half months, crawled just after six, and was running by a year.  At two, his vocabulary is huge.  He knows all his colors, most of the letters and numbers, has memorized countless books and songs, and loves his big brother.  He’s in the helping stage.  He wants to help give Cooper his nasal spray, he loves sitting next to Cooper and “reading” him a book, and if you ask him what Cooper says, he says, “mamama,” just like Cooper.  

Cooper goes to school from 8-3:30 year round, so I get to be just a regular, old mom Monday-Friday.  And let me tell you, it is just as stressful.  Semmes tells me no when he doesn’t want to do something, throws huge, fall on the ground tantrums, steals toys from his friends (and cries when someone takes something from him), and in general behaves like a typical toddler.  He also gives kisses if you’re sad, yells “Hold, mama” when he wants a hug, and is just so sweet.  

I love my life and I love my kids.  Is my life exactly the way I pictured it when I was younger?  No.  But I have come to realize several things about being two moms:
1. We’re not super heroes.  The learning curve for a special needs mom might be steeper, but we’re just doing what all other moms do: figuring out how to do this mom thing the best way we can and doing what is best for our child.  
2. A good support system is the best thing you can have.  Thankfully, my husband is a pediatrician, so we have been surrounded since the time of Cooper’s birth by an amazing team of doctors that love Cooper, and us.  None of our family lives in town, or even in the state, so I’ve been so lucky to find an amazing group of friends that I wouldn’t know what I would do without.
3. I’m thankful that Semmes will grow up with a sibling with special needs. I hope that it makes him more empathetic, more willing to stand up for those that are weaker or have less. I think that some of the life lessons he will learn from Cooper may not be easy ones, but I’m glad that he will get to learn them just the same.

My life is filled with more laughter, love, and joy than it is with struggle and pain. So I call that a good life.

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