I was talking with a good friend of mine yesterday about how everything is going. I was telling her that it feels like I am a guest on Oprah. The guest that would normally make me cry and then the show would end and I’d wipe my tears and go on with my day. It is a very odd feeling being in the situation. It feels like I am in a movie. You read about these stories, see them on television, hear about them from a friend that has a friend. I never even heard of these diseases until now.
We found out that Cara had a brain injury February 3rd and it feels as though it was years ago. We have gone from a little developmentally delayed, to static brain injury and cerebral palsy, to seizures, to now a progressive rare disease all in 3 months. Dan and I spend a lot of time sighing and shaking our heads. Most days I wonder how the both of us are able to keep ourselves together so well. Dan has had a lot of pressure and stress at work, we still aren’t totally settled in our new house, Natalie is…well, two, and Cara has appointments after appointments. I have no idea how we do it but I am guessing most of it has to do with the fact that we have no other choice and that we have each other. This has been the longest three months of my life.
I still cry when I think about Cara’s future and how unclear it is. The tears come when I have still moments. In the car, right before I fall asleep, when the house is quiet… Mostly my eyes just fill with tears. I fight as hard as I can to stop it there because I am afraid that if I let a few fall I won’t stop. I can stop myself by taking a deep breath and digging deep for strength. My girls give me an endless well of strength. You never know how strong and weak you are until you have children.
A song that I sing often to Cara is “Three Little Birds” by Bob Marley. I change the lyrics a bit. I add Cara’s name. “Cara, don’t worry about a thing, ’cause every little thing is gonna be alright.” You would think that this song would bring tears to my eyes but it dries them and makes me smile. I hope she listens to the song and lets the words into her heart.
From the lab results that they have done so far it looks like Cara has a mitochondrial issue. We have an appointment date with the neurometabolic team at OHSU for May 3rd. Cara has been referred to an orthopedic surgeon for a muscle and skin biopsy. We don’t have a date for that yet. Hopefully they wont need much of either. We are trying to relax and stay patient the best we can. The diagnostic process will take some time and it is important that they get it right.