MRI, Bad News but Keep Smiling

Tuesday Mark and I went to Doernbecher Children’s Hospital for Lydia’s second MRI brain scan of her life.

The first MRI had been the beginning for us, the first news of her brain malformations, the first time we heard of “low white matter” and “limited lifespan.” That was in 2013.

This MRI was to discover any changes in her brain, give us an idea if things were getting 1) worse, 2) holding steady or 3) getting better. As we went in to the appointment we reminded ourselves of all the amazing things she’s accomplished – that she’s getting better at holding up her head and turning her head left and right despite the endless and relentless seizures. That she is able to eat baby purees, that she smiles more and more, that she has started making daily noises, that she is moving forward even though it is in the most gentle and subtle of ways. I guess we were still carried away by her progress, though it was small. We had high hopes.

Today we saw the neurologist. I’m sorry to tell you, but the already low amount of white matter she had in her brain has nearly disappeared completely. Her brain is shrinking. Her white matter is almost gone. She is not getting better. She is not going to live a long life. She is not going to get any better.

Our little girl is not going to get any better.

I looked at myself in the mirror tonight and I told myself, you are a mother whose young child is going to die. That is who you are now. Actually who you have been for the last few years, I guess who you have always been, although you did not know it. You did not know it when you were a child yourself and playing house among the big boulder retaining wall for the apartments, pretending there was a kitchen with leaf and stick utensils and a nursery where you would put your mud babies to bed. Even then, among the stone couches and leaf blankets, you were going to grow up to be a mother whose child would die young.

I guess I knew that after the first MRI appointment in 2013, two years ago. I’m not sure why I forgot. Perhaps because it is very hard to live on the edge of a constant crisis. You eventually have to function a little, feed yourself, maybe take a shower. Day by day you become a living person again and not a ghost. You just have to. You have more than just yourself to think of.

This time I don’t want to waste all that time processing, dealing, coping – I just want to bury my face in the crown of her head and memorize her smell before she’s gone. I want to have traced the edge of her cheek one thousand times before it’s not in front of me anymore. I want to treasure her rather than be blinded by my own selfish grief. She’s my baby. It is so lucky that I have this time with her, so tortuously fortunate to know that she is going to die, so that I don’t waste another moment of her life being sad.

During the play there is a line by my mother friend who has lost her child, “For you, I would have taken away your pain in an instant. But for me, I would not have changed a thing.”

We’ve got her for now. She’s here now. She smiles and we’re not going to let her smile alone.