I spend a ridiculous amount of time talking with doctors and specialist. Between my crohn’s disease and Rett Syndrome I have heard a lot of things from medical professionals over the years. It has ranged from helpful to unfathomable with a large dose of the unexpected. Last weeks adventure included two different doctors. The first, Claire’s neurologist was more on the nightmare side of the spectrum. While I huddled with Claire in the corner of the waiting room the CNA opened the door and called her name. Chloe went up to the stranger and told her we would need another minute because Claire wasn’t breathing. My heart broke as, once again, our sweet little girl stepped up and helped out years beyond her age. She was far more patient with the CNA than I was. Mid seizure they tried to get vitals and well, I am taking lessons from Chloe, I will leave it there.
When we got home I didn’t get about the business of cooking dinner or any of the other million things that were on the to do list for that day. I turned on the tv for the girls, got a cold beer and sat down to mindlessly entertain myself online. The next day I didn’t do much either. I had coffee with a friend and took Claire to pt but that was it. We’ve been eating take out and frozen burritos and the laundry piles are many. After several days of seizures I stop trying, mainly because I just can’t and I’m constantly making peace with this.
The way I see it, is it’s a sign of good choices. I am choosing to spend my time going back and forth to Boston as well as all of the other specialist because I want Claire to be in the best shape she can be. I spend time cuddling with Chloe instead of being productive because I want her to know how important she is to me. I leave both girls with other care providers a lot because I need a break. The result of these choices is that there are a lot of areas in my life that are a bit neglected. I’ve gained weight, I’m behind on billing the insurance company and certainly something is rotting in the fridge. I’m willing to take that as a sign of life well lived, given the circumstances.
The second appointment of the week was for Chloe, our soon to be kindergartener. Claire had a huge grin as she loved seeing her sister as the patient that was nervous about shots. I sat in awe as Chloe answered all the questions for herself and told the doctor about every detail of her health. She made sure he checked her eyes to make sure her brain was working, pretty sure she got that from the nuero appointment. Turns out she is fine. I told the doctor my concerns about what she is exposed to with Claire and how she takes on too much responsibility. That is when I heard my favorite thing that I have been told by a doctor, ever. He said, “I don’t tell many people this, but you do a great job of not feeling guilty for the healthy amount of neglect you provide for Chloe.” I’ve been fine with the neglect of the laundry and all of the other details but I really do struggle with how much I have to let Chloe go. Apparently, that is indeed a good thing, something that happens less and less in this day and age. So Chloe, I am sorry and you are welcome. Yes, this is officially an adventure.