Being in the hospital is strange. It is a lonely and isolating place, yet I am surrounded by other parents who know too well what we are dealing with. I have come to the realization that we are the newest members of one of the worst clubs on Earth: Parents with Sick Kids. It doesn't matter what it is that the child has; it is torture for the parents. Yet, I think there may be a special medal or level of membership reserved for those of us with the really bad stuff, the conditions that don't have a pill or injection or regiment that leads to a cure.
We are on the oncology and hematology unit, reserved only for those with horrible blood diseases and cancers. It's a small place, but it's bustling all the time. I have met moms of kids with sickle cell anemia, leukemia, hydrocephalus and a few other diseases. Scarlett is not the youngest, or the sickest. She may be the loudest...
One family, our first roommates, travel from out of state to receive care on a regular basis. They stay overnight or for weeks, depending on the next course of treatment. As the mom toured me around the hospital after we were admitted, she told me how she was missing her other son's birthday. They were paying for a taxi back to the airport, so my parents drove them instead. Her son is nearing the end of treatment and is doing well.
Our second roommate was a little boy with some kind of blood disease, I didn't know what. he was admitted in the middle of the night. I overheard him the next day: "Mom, I just want my normal life back. I want to go back to the way it was. I want to ride a roller coaster. But I can't because my platelets are low, low, low!" I didn't hear or see his mom's response, but I felt the pain for her. I can only hope that Scarlett is done with this before she can talk.
Our newest roommate is 10-month old with cysts in his brain. His condition was diagnosed in utero by ultrasound. His mom, who may be barely 20, was given the option of termination at 5 1/2 months pregnant. She chose to leave it to God, and her son is thriving. She detailed all the procedures he has had since he was born...he has spent months of his short life in hospital rooms like this. Now, he may have an infection that is causing swelling around his brain. She tries to keep him calm because, when he cries hard, pressure builds up in his brain and causes problems for his shunt. She cried with him as they continually tried to get an IV in, and then found new strength and started telling them that no one else would stick her baby tonight, he was done.
We swap stories like war veterans. Diagnoses, emergency visits, IVs, surgeries are the shrapnel we have under our skin. We all know the darkness that the others have faced. It doesn't always look the same, but it is so dark, so haunting, it leaves traces that are hard to hide.
There is a worse club: those that have lost the battle. I am still fighting, and I am not ready to trade in my membership yet.