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What We Don't Say as Parents of a Child With Complex Medical Needs

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From day one, we decided that the only way we were going to be able to survive our new life is to focus on the positives. Some days are a lot harder than others. We are more than aware of the severity of our situation – and not delusional in any way. Instead of dwelling on every setback, bump, hurdle or whatever you choose to call it, we decided that we would acknowledge the challenge then move forward. We have put all of our energy into celebrating every victory, no matter how small. We cherish each moment we get to share with our daughter, Casey.

When we were in the NICU with Casey (back in the very beginning), my husband, Tim, and I really had no choice other than to adopt the positive approach. The doctors actually pulled me aside and were legitimately concerned that I was delusional for being so positive. I explained to them, the same as I am explaining to you all now, if I can’t hold on to the positives, I won’t make it.

I had to explain to them that yes, I know my child is very sick. I had to explain to them that I know I could (and still can) lose her at any moment on any day. I had to explain that I know my daughter will only get worse over time. And I had to tell them when the time comes, I will somehow recognize it and accept it. These were not things I wanted to say, but this was/is our reality. I know it, and Tim knows it. But we don’t want to waste the precious time we have with Casey dwelling on those things. We want to make every moment count and as wonderful and positive for Casey as we possibly can.

Just as we focus on enjoying and celebrating life with Casey, we want others to do the same. We don’t want people to hear her story and feel sad or pity for her or us, or “glad they aren’t us” (yes, that’s a quote). We want people to hear about her and feel proud and lucky to know her. We want people to see her for the amazing fighter she is. And we want people to see all of her achievements and help her celebrate them.

We hold hope that Casey has a long and wonderful life. We feel so incredibly blessed to have her in our lives. She is the most amazing person I have ever known. Our hope is that everyone in her life knows how lucky they are to be part of her amazing journey.

Each time Casey is sick, each time she is hospitalized, even when she grows, she gets worse. Her pulmonary, GI and physical development are deteriorating (sometimes slowly, sometimes quickly), and there is nothing we can do to stop them. Even when she gets out of the hospital or gets over a specific illness, she is not able to quite make it all the way back to where she was before. Eventually she will no longer be able to breathe and/or eat. Every time we go to a doctor’s appointment, they point out to me that she is worse than the time before. I don’t talk much about those details. When I say an appointment went well, it means the doctor did not push to admit Casey to the hospital or hospice care. It means Casey is doing as well as can be expected for her condition.

We focus on the positives and will continue to do so. The words we don’t say are just as important as the ones we do say.

The Barnes family
The Barnes family

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Originally published: January 12, 2016
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