I don't know if there is any way to describe that feeling--what it's like to walk into a room and see your baby like that. I don't think there are words for it. I know I won't ever forget it, but I don't know if I will ever really be able to talk about it, to express it.
He had obviously been seizing for awhile, because for the first time ever it had spread to his whole body. I carried him out to the living room, gave him his emergency medicine and called 911, staring at his tiny blue fingertips.
Strapped into the side of the ambulance watching my boy's body shake, all I could think of was all the things I did wrong, all the things I should have done.
I should have called the doctor about his cough yesterday. I should have gone in to check on him earlier. I should have increased his medicine last week. I should have prevented this, I should have protected him. At least from it being this bad.
I should have.
His seizure lasted a long time, even after the doctors were able to stop his body from moving. They had to put him on a ventilator to make sure he would be able to breathe.
We were just closing in on the One Year Anniversary of being hospital stay free. April 7th. We were so close. He has done so well. And here we were once again.
The doctors determined that he had a pretty serious respiratory infection, and the next morning they told us he had pneumonia. When he is that sick, his seizure medication becomes less effective. It's much easier for him to have a seizure when his body is fighting illness. He may have started a fever during his nap, which started the whole thing.
We stayed in the PICU that night, and when Avram came out of his sedation the next morning he decided he was done with his breathing tube and coughed it out. They tried to keep an oxygen mask on his nose, but he eventually ripped that out, too. The nurses all joked that he had taken charge of making his own medical decisions. If there is one thing I know, it is that my boy is one tough little cookie.
By Sunday morning his team of doctors felt that his breathing had stabilized, he was safe from seizures for the time being, and that his fever was gone. We were sent home.
I am very impressed with the new hospital, and I am very grateful that I can see it from my driveway. The PICU has literally been open for two weeks; Avram was the first child they had had on a ventilator (Lucky us!). I am grateful for the access to healthcare we have, when so many parents around the world will never be able to get their babies to a hospital, will never be able to see a qualified physician. I am grateful for the health insurance we have, even if it doesn't pay for every last penny it certainly pays more than we ever could alone. I am grateful for a shunt that allows my son to live, for medication that keeps him from having seizures (most of the time). We are blessed.
Avram had a hot meal, a hot bath, and clean pajamas. He is so happy to not have dozens of wires restricting his movements, or to be confined to a tiny crib.
I rocked him a little longer than usual tonight, letting him run his fingers through my hair and nuzzle his nose into my neck. I stood up to lay him in bed, and I froze. To lay him back down in that same exact place. To put his head on that same pillow, in that same bed.
Does he know? Does he remember?
I feel like the standard phrase of comfort people give in situations like ours is that God chose me and Jason, that He entrusted us with this boy. God chose us to take care of him. He had a little boy who needed extra care, and He chose us to give it.
This doesn't offer me the comfort that I think it is intended to. My beef with God isn't that He chose me. I will care for this boy until my dying breath, with all the love and patience my heart can muster. Caring for Avram is possibly the greatest gift of my life, no one has to point that out to me.
My beef with God is that He chose Avram, that He chose this sweet, loving, funny, beautiful boy to go through all this. My beef with God is that He lets Avram bear all this pain, not me.
I stood there for awhile, just holding him, just staring down at the lump in the mattress. I prayed for grace. I prayed for the strength to be kind to myself. I prayed for Help to continue to be present, to be in the places I cannot always be, to heal the things I cannot: in Avram, in myself.
I prayed for sweet, peaceful sleep for my boy.