Seems simple, right? It’s not.
Someone recently asked me what my hobbies are and what I love to do in my spare time. I literally couldn’t even make up an answer. I don’t know who I am anymore.
I’ve surrounded myself with so much disability that I could damn well pass for a doctor, but I don’t feel human.
I can’t even remember the last time I did something for myself. I can’t remember the last time I voluntarily googled something that wasn’t about diseases or disability.
I couldn’t remember the word “familiarize” today. I’m ashamed.
On top of that, it’s really all anyone wants to talk to me about. I don’t have much adult conversation beyond Carter. I truly appreciate everyone reaching out and loving him so much that they want to follow every step of his journey. We are blessed. But I want people to remember that I’m still a girl.
I like music, space, dinosaurs and horror movies.
I want to talk about my day, I want to talk about ideas, I want to talk about life. I want to hear about your life.
I’m not a mom who has a child with disabilities. I’m just a mom to a sweet little boy. He’s a little different, but what’s good about normal?
This last month has been one of the most stressful times in our lives. Managing my sons care is enough without now having to shop for a new job. Stressful…and I use that term loosely.
Where do I start?
Since Carter’s micro array came back normal, we have pursued whole exome sequencing. We got extremely lucky that insurance is picking up the entire cost. Thank you to the heavens.
That blood test is actually happening in a few hours. I should probably sleep, but I ran out of sheep and I’m starting on numbers. Crossing all of my appendages that we get a hit. It would be mighty miraculous.
Carter also had a scope surgery done last Friday. Everything was normal so we have started him on elavil for abdominal migraines, hoping this stops or lessens his vomiting. Poor thing has been vomiting every 2-4 minutes his whole short life. I can’t watch it anymore and am pushing until it stops.
Positive moment of the day: my dude focused on me today. He heard me, he responded, he laughed at my face. It was the best feeling I’ve had in a very long time. His inchstones make you forget there is this whole other world of bills and adulting. It’s just us in that moment. Nothing else exists.