Raising Reese | Shaped (but not defined) By a Rare Disease

She didn’t choose this.

But she does it with such courage and just the right amount of sass.

I still wish she didn’t have to. But then, who would she be without these challenges? They have undoubtedly shaped her personality. The very essence of who she is is completely wrapped up in the struggles that shaped her.

My daughter Reese, she is 1 in 100,000.

And today, as others talk about Rare Disease Day and try to bring a little light to diseases and challenges that you rarely hear about, I want to tell you about my Reese. 

Reese was born with a congenital disease called Currarino Syndrome. It came as a complete shock to us – and we were woefully unprepared and uneducated for all of her baby and toddler years.

It wasn’t until she was 4 years old, after years of questions, uncertainties, anger, fear, and so much frustration, that a doctor was finally able to diagnose her.

Today, my Reese is 7 ½ (every mama knows that half matters a lot when you’re younger, but there’s no way I’m claiming my half years now that I am approaching 40) and we finally have an excellent handle on her condition and her daily care. Were she born in a third world country, there’s a good chance she wouldn’t be with us today. When I let myself go there, and think about that, my gratitude is overwhelming. So Michael and I, we gratefully understand and recognize the privilege our healthcare system is in the United States, even with it’s many faults. Although it took us years to figure things out, we have our Reese, and have had the privilege of seeing her grow. 

I’ve stood weeping in a hallway too many times to count, though the heart certainly remembers every one of them, as a team of surgeons and nurses carried her away. She’s had four major surgeries and been under full anesthesia countless times. She’s had MRI’s, 200+ x-rays, far more ultrasounds than I ever had while pregnant, too many needle pokes and NG tubes placed – and even still, she thrives. She’s been strapped down to a hospital bed, held down by a team of nurses, while I prayed and whispered in her ear, my own hot tears running down my face and into her blonde curls. I’ve never felt more inept as a mother than in those moments, where I could do nothing to take away the pain and terror my daughter was feeling.  And even still, she thrives.

She has scars on her belly, a large scar on her back that healed so poorly, and whether she realizes it or not, she has scars on her heart too. But somehow, in spite of all the trauma and horror of repeated hospitalizations, she has turned into the most amazing child. She has a boldness and a fearlessness that she couldn’t possibly possess had she never been exposed to her challenges. She overflows with empathy for others, something I got to see beautifully directed towards my own mama so many times.

Science says that pressure over time turns coal into diamonds, and this mama would tell you that repeated physical, mental, and emotional stress turns a child into a wise, compassionate, and courageous old soul. And much like a diamond, today, my Reese shines.

Reese sees and understands more than most seven year olds ever should. When she was 2 ½ she could point out her ribs, her femur, and her pelvis on the x-ray film.  When she was five she decided that she wanted to take her daily medical care into her own hands, so we followed through on a surgery to give her that chance. Was she fearful? Yes – and it broke my heart to watch her lip tremble and hear her cry when it was time for them to put her under. My God yes, it broke me all over again. But she busted out of that hospital in 24 hours, that shining, thriving girl of mine. She knew she wanted to get home to recover and she knew the only way to do that was to get out of that bed and walk. So I watched her sob while she walked, over and over, and after one sleep in the hospital, we took that girl home to finish her recovery.

Nearly every day of her life, Reese spends (and has spent) between 60-90 minutes taking care of her medical needs. This is time that most other seven year olds spend playing outside, building legos, crafting, or practicing soccer. She knows she is different and that other kids don’t have to do what she does. She knows we have to say no to playdates and sports sometimes because there are not enough hours in the day to take care of her medical needs and still have all the fun. She knows all of this, and even still, she hurls herself through the everyday with a contagious joy for life. Even still, she thrives.

Reese has every reason to be bitter and complain about life being unfair. She has every right to go to bed crying because being different is hard, because sometimes kids are mean and just don’t understand.  But she doesn’t. She looks boldly at her body in the mirror and says “thank you special belly button, thank you scars.”

She knows there’s value in her differences.

She lives wildly, joyfully, and curiously.  She owns her diagnosis and doesn’t allow it any space to define her. She is my shining, thriving Reese, and she is perfectly made, rare disease or not. 

xoxo,

Jenn

4 Comments

  1. Meredith
    February 2020 / 7:42 pm

    Those sweet baby pictures! I hope this gives a mama with a sick baby lots of hope. How scary those days must have been ❤

    • Jenn + Lo
      February 2020 / 9:37 pm

      Thanks Meredith! That’s our hope too – that this story can be an encouragement to many others. Reese wouldn’t want it any other way either!

  2. February 2020 / 8:31 pm

    I really loved reading this, Jenn. You have such a gift for writing. I loved learning more about Reese and I hope she continues to thrive! Her spark is amazing… I bet she got it from her mama!♥️

    • Jenn + Lo
      February 2020 / 9:39 pm

      Thanks for reading it Star! It’s been a tough story to live, but we’ve found that sharing it helps so much. (And I agree that she gets it from her mama (xo – Lo)).

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