In the past couple of months, I’ve had to make an unexpected transition, from patient to caregiver. As a caregiver, I am faced with all the uncertainties I faced as a patient, and the additional responsibility of asking an innocent to step into the unknown with me. He has placed his trust in me completely, and I must provide a wall of certainty against which he can rage and storm over the trivial (powdery textured pro-biotic/yogurt mixtures) and the tremendous (the fear and pain of a blood draw that often ends in nausea and vomiting).
Yesterday we got through the blood draw with a mixture of my half carrying him from car to hospital to registration, showing movies, holding him, and at the end closing the chair around us and cradling my son in my lap as he hid his eyes against my arm and the hospital staff completed the procedure. Despite his protests and fear, my son showed courage, and he found a way to get through it for the third time since his diagnosis, without vomiting.
For my son, Lyme represents a loss of control over his own body. He must take supplements and medication when we say, allow people to poke holes in his very skin, go to visit doctors, and soon he will discover what the word “suppository” means when we give him his first dose of EDTA for chelation. These violations of his wishes and feelings and body go on and on, and he is given little choice about them.
This morning, he discovered another loss — his favorite doll, Blanchie. He’s known the details for a while, but somehow he realized today that she really wasn’t coming back. Grief and sorrow overflowed and he sobbed in my arms for a long time before we could begin the day. By the time we arrived at his school, he was done being out of control, and when I thoughtlessly ignored his request that his gloves go on before he leave the car, we ended up with a good 30 minutes of anger and refusal of all remedies. He felt so small and fragile in my arms when I finally hugged him goodbye for the day, and I could see how desperately he sought a feeling of control over his life.
Once he finally entered the classroom, I allowed myself to let go and cry. I can’t give Blanchie back to him, I can’t give him back his control, I can’t give him back the feeling of complete safety that a growing boy should have, I can’t give him back his innocence about illness and health and death and life. The most comforting thing I can give him is stories of my own trials, the knowledge that I went through many of the same things.
By evening, he was able to put all of this into words, and we spoke of control and the fact that the things he really wants to control, he cannot. One small thing that might help is the ability to take pills instead of tasting and eating so much medicine. A friend helped me out by telling me that I can teach him to swallow pills by using small pieces of ice, and we began learning that this evening. It’s a step, even if a small one.
So my son’s experience is a loss of control. But as his caregiver I feel something entirely different. I am the one taking choices away from him. I have the responsibility of deciding whom to believe. I could make this all end right now by just believing a different set of doctors. I hold in my arms one of the most fragile, brave, strong, loud, quiet, sensitive, smart, wild, lucid, eloquent beings I have ever known, and I tell him he must fill his body with medicines so strong that he needs to get tests to make sure they aren’t making him sick and take other medicines to keep him safe from the first set. His gut says no, I say yes, and he does it because he loves me, trusts me, wants to please me, is bribed by me, faces consequences if he doesn’t. I, who am nothing more than a person who is confused, unsure, flawed, human. We take it one day at a time, and I hope I won’t break him, will heal him, will know when to stop, what is right, what is wrong. Wish us luck.