Prepping for trauma
The end of the year means it’s time for me to start making plans for my daughter’s healthcare in the new year. It’s also time for my pre-anxiety anxiety to rear its ugly head.
Every year, my sweet, brave girl has to have MRIs of her brain and abdomen to keep an eye on her tuberous sclerosis complex and polycystic kidney disease. Each scan is about 45 minutes, and she prefers being put to sleep for them. The last time she went without general anesthesia was a bit of a disaster. She said she’d never do it again. I said we’d never go back there again.
Of course, when this is the only hospital that insurance will cover, we had to go back. And since her two life-threatening genetic diseases are not going to magically go away, we have to keep going back. Every single year.
Every year, there is some change in the routine at the hospital, and it throws my daughter off keel. Last year, the anesthesiologist said my teenager was too old to be put to sleep with gas, and that caused another disaster.
Now we are both dreading her next scans. I’m already having major anxiety just thinking about it. I don’t think it’s even on my daughter’s radar yet, but I’m already trying to figure out how to make things go as smoothly as possible.
I don’t know what to do at this point. I want to say, “To hell with all of this!” and pretend like she doesn’t need to keep fighting these illnesses. But we all know that wouldn’t help her stay healthy. If we missed the growth of a tumor or new cysts, I would never forgive myself for not getting her the treatment she needed as soon as possible.
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So, apparently I do know what to do. I just don’t want to do it. I don’t know how to do it in a way that won’t cause us both more pain.
It is so hard to see your baby, no matter how old she is, go through the pain of chronic illness. The quarterly blood draws. The yearly MRIs. And ALL the doctors’ visits. Cardiology. Neurology. Nephrology. Dermatology. Neuropsychology. Developmental pediatrics. Ophthalmology. There are probably more I’m forgetting. And there will be even more in the future.
I want to protect her from this. No one wants this for a child.
I don’t know why I’m sharing any of this, other than to show other parents of sick kids that I know how they feel. And maybe I’m also sharing for selfish reasons. I could definitely use some advice and emotional support from others going through something similar. I’ve been doing this for 12 years and still don’t have it down.
How do you help your children through scary moments, such as having their blood drawn, getting IVs, and undergoing testing and surgeries? How do you stay calm when they lose it?
To anyone who has made it to the end of this, thank you for caring. I wish you all a happy and healthy new year!
