It was not long after his first birthday when the fever spiked. I wouldn’t have known that 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 work. In the screen of the baby monitor I could see you tossing and turning and I hoped you weren’t sick too. Within a minute I could see the arching start. Your neck pulled back, your arms stiff and spine arched. Your posture resembled the shape of a rainbow. Then your screaming started. The pain from the muscle contractions woke you up and you cried for me. I got up to put your brother down to come help you, but as I walked across the room to his bed, he began to convulse. The Advil was not working and he had begun to seize. It was the first seizure I had ever witnessed and I was instantly terrified. Alone and afraid I had no choice but to ignore your cries for help and stay with your brother. As I held his shaking body in my arms, my ears were bombarded with your 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 came to you. But you no longer wanted me. You felt angry and betrayed. In your moment of excruciating pain I ignored you. I had hollered down the hall several times that your brother was sick and I would come as soon as I could, but it did’t matter to you. At four-years old you were not capable of understanding. You just knew that I didn’t come. I was trying to get you both the best medical attention and care that I could and in doing so I had failed you. I knew I had to, but it still destroyed me.
For me, this is by far and away the hardest aspect of raising two kids with dystonia. It’s horrible that I have to choose between you and your brother when you are both in crisis. I can only do so much at a time. I can’t be in two places at once. I can’t always be simultaneously with both of you. What I will always struggle with is the fact that in doing what one of you needs I sometimes have to ignore what the other needs. So I have had to learn to triage needs. Your need for treatment for gastric bleeding trumps your brother’s need for emotional support during a dystonic storm. When you were crying from pain in the middle of the night and your brother was having a seizure, I left you alone in your room screaming for me. Seizure trumped back spasms. Its these choices that break me apart. I want to be there for you always. But I can’t. I am doing my best to accept this fact.
My greatest fear is that you 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 that I am 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 is 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 am sorry for all the times I have 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 am sorry that I am not enough. Please know that I am 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 be there for you even though sometimes I know it just simply won’t be enough.