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When My Daughter Asked About Her Brother's Down Syndrome Diagnosis

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“Mommy, can I ask you a question?” I could tell this was not going to be a simple yes or no question. I was packing her lunch, feeding her breakfast, and giving the baby a bottle. It wasn’t a great time for a heart-to-heart but I saw the thoughtful look in her eye and knew I couldn’t refuse. Kindergarten would have to wait just a few minutes.

“Of course, sweetie. What is it?”

“Is Down syndrome a sickness? Is it good or bad? Will he always have it? If the doctors can fix his heart, why can’t they fix the Down syndrome too?” And she kept going. Her questions seemed endless.

It had been almost a year since our sweet Joey joined the family, sporting an extra chromosome in every cell of his body. However, the diagnosis of Down syndrome didn’t come until he was almost 4 months old. I wish I could say I took it in a stride, but honestly it pulled the rug out from under me. Never — not for one minute — did I doubt my love for my child. But at that time, the future suddenly seemed scary, full of unknowns and struggles.

In those early days, I had so many questions and so few answers. The “hows” and “whys” seemed insurmountable. I finally determined I couldn’t answer all the questions, but I could put one foot in front of the other. So I did.

Each day the sun would come up, I would get out of bed, and I would love my husband and kids. I would make breakfast and get people to school and change diapers and snuggle and play games and just live. And of course, with this new diagnosis in our lives, I would go to cardiologist appointments and therapy appointments and make late-night hospital trips for croup, too. But I just did them one thing at a time, and slowly the questions that had shouted so loud in those early days quieted.

And now here I was, just putting one foot in front of the other, and all of the questions are coming back to me through my 5-year-old daughter. All at once. I had a moment of panic. But then I answered her to the best of my ability.

She was too young to understand that Down syndrome is an extra copy of the 21st chromosome. Instead, I explained that he will always have it, but I assured her it is not a sickness. Having a disability can be hard, but hard things aren’t always bad. They often come with incredible blessings — and Joey’s life has been proof of that.

I told my sweet girl what an amazing little brother she has (which I believe she already knew). I said that I believe God made Joey exactly as he is, extra chromosome and all, and that there are big plans for him. I praised her for being such a loving big sister.

I realized the biggest lesson I had learned over the last year: I didn’t need to have all the answers, I just needed to love my family and live one day at a time. Together we would tackle whatever came our way. Any questions would sort themselves out in time.

She looked at me for a minute, then got that same thoughtful look. “Mommy?”

“Yes, honey?”

“Do we have any kiwi left?”

Sometimes you need to delve into questions, and sometimes you just need to put one foot in front of the other and have some breakfast.

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Originally published: February 22, 2017
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