When I Have to Choose One Child's Medical Needs Over the Other's

Not long after his 1st birthday, the fever spiked.

I wouldn’t have known he was even sick had it not been for me kissing him on the head before I went to sleep. He was hot. Really hot. I gave him Tylenol, but it didn’t work. The fever stayed at a solid 104 degrees. So I gave him Advil, too. I sat in the rocking chair with him in my arms and watched the rise and fall of his chest. Staring at him, I tried to will the Advil to work and bring the fever down. I wondered what I should do next if it didn’t.

In the screen of the baby monitor I could see my other child tossing and turning, and I hoped he wasn’t sick too. But within a minute I could see the arching start. His neck pulled back and his arms stiffened. His posture resembled the shape of a rainbow. Then the screaming started. The pain from the muscle contractions woke him up, and he cried for me. I got up to put his brother down to come help, but as I walked across the room to the bed, my baby began to convulse. He’d begun to seize. It was the first seizure I’d ever witnessed, and I was instantly terrified. Alone and afraid, I had no choice but to ignore my other son’s cries for help and stay with his brother. As I held his shaking body in my arms, my ears were bombarded with cries, “Mommy, where are you? Why aren’t you comming? Mommy, help!”

After I got off the phone with the doctor and got his fever down I went to him. But you he longer wanted me. He felt angry and betrayed. In his moment of excruciating pain, I’d ignored him. I’d hollered down the hall several times that his brother was sick and that I’d come as soon as I could, but it did’t matter to him. At 4-years old, he wasn’t capable of understanding. He just knew I hadn’t come. I was trying to get them both the best medical attention and care I could, and in doing so, I’d failed him. I knew I’d done what I had to, but it still destroyed me.

For me, this is by far the hardest aspect of raising two kids with Dystonia. It’s horrible that I have to choose between my children when they are both in crisis. I can only do so much at a time. I can’t be in two places at once. What I will always struggle with is the fact that in doing what one needs I sometimes have to ignore what the other needs. So I’ve had to learn to triage needs. One’s need for treatment for gastric bleeding trumps his brother’s need for emotional support during a dystonic storm. Seizure trumped back spasms. It’s these choices that break me apart. I want to be there for both of them always. But I can’t. I’m doing my best to accept this fact.

My greatest fear is that you, my 4-year-old boy, will be scarred and confused by what I do and don’t do.  Because no matter how I try to explain it, you don’t see the choice. All you see is Mommy walking away from you and Mommy choosing not to come help when you call me in desperate pain. You don’t see I’m trying to save you both from your own bodies. You don’t see me cry over the impossible decisions I’m forced to make. All you see is me not choosing you — me not aways being there when you need me. It’s my hope that in time, you come to realize that I gave you all I could, even on the days when it wasn’t enough

So to you, my little love, please know I’m sorry. I’m sorry for all the times I’ve left you scared and crying for me. I’m sorry for all the pain I can’t fix. I’m sorry for not being braver and stronger. I’m sorry that any of this is happening to you.  I’m sorry I am not more.  I’m sorry I am not enough. Please know that I’m doing all can. I will never stop trying to help, and I will never stop looking for answers.  I will always do everything I can to help you, even though sometimes I know it just simply won’t be enough.

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