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When My 3-Year-Old Daughter Took a Stand Against My Chronic Illness

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I have been living with a debilitating chronic illness for nearly 15 years, but more recently it has taken on a very new dimension. It’s my daughter, really, that has changed the game for me. She is just 3 years old, and my disease is becoming her disease, too. Yes, this illness is genetic. No, she does not have it. But she lives with it. She lives with it every single day.

In an ideal world, my daughter wouldn’t know that I am sick. I avoid explicit conversations about it, and when ambulances are called, I do my best to make these alarming situations appear benign. When I am hospitalized, I have her come visit and talk to my nurses and doctors and we all try our best to turn a somber environment into one of love, happiness and healing.

But, ambulances do travel to our home with sirens on. Mommy does spend weeks at a time in the hospital. And recoveries from surgeries take their toll both at our home and in her mind. When I recently lost her baby sister midway through pregnancy, she wanted to know where she went. And she asked if I would be joining her baby sister in heaven soon, too.

But then one day, something happened. It happened like any other milestone a child achieves; like that day they decide to put one foot in front of the other, or the first time they mutter, “mama.” It was like a light switch went off, and I could see it in her eyes before she even said it.

“Mommy, why are you always sick?”

I wasn’t ready. I didn’t know what to say. I hadn’t prepared. But, as parents, when are we really prepared for anything? And what I said, in response, was not something that I had thought I would be telling her for years. “Well, baby, I lost my large intestine and my body became scarred. And sometimes those scars inside me make me very sick.”

She looked at me, shocked. “But you need your large intestine, Mommy!” And she began to cry, and stroke my hair in a way that made me feel pitied.

“No, no, honey. You don’t need it. And I will always be here for you and I will always love you, and I really, really don’t need that large intestine, I promise you, everything will be OK,” I responded while enveloping her tiny body in my arms.

“Well, Mommy. You’re right. Everything will be OK. Because I am going to get you a new int-ta-testine,” she said matter-of-factly, as she wiped the tears from her eyes with a steadfast reassurance.

This was several months ago, and not a single day has passed where she hasn’t thought of a new way to get me my intestine: “Let’s take one from someone else” she has suggested, perhaps not too altruistically. “I have an idea! I’ll build a new one! I’ll build it with skin!” she has suggested to me, elated and proud that she had come up with yet another new idea. All along, I had been afraid that delivering the news about this missing part of me would scare her, but my little girl is stronger than I ever could have imagined. And the idea that something was missing from me gave her strength through hope that it could be replaced.   

I may or may not have another large intestine again in my lifetime. And cures for scar tissue may or may not be found. Only stem cells can decide the course my life will take. Stem cells, and the courage and perseverance of the human mind. And, whether it be through unbreakable hope or tangible treatments, I have found my cure in the unlikeliest of places. It turns out that it’s my little girl who has within her all the stuff that cures are made of.

Originally published: September 30, 2016
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