Dear Mom, Thank You for Being a Cool 'Chronic Illness Mom'
I fell ill with reflex sympathetic dystrophy (RSD) at 13. I needed you. You were there. You learned how to drive to doctors and specialists far and wide, you found the money to send me wherever I needed to go, and you learned how to translate all of the doctor and medical talk into words that not only you could understand, but into ones that you could explain to me too.
You Googled the diagnosis that nobody had bothered explaining to us, you took me to school for an hour at a time, only to have to come and pick me right back up again. You figured out how to fit the wheelchair into the back of your little hatch, without it falling to pieces when I sat in it after you’d put it back together.
You slept in an awkward, uncomfortable, and honestly, a little gross, armchairs for weeks on end beside a hospital bed. And, you were alert within seconds if I so much as stirred – just in case I might need you.
You made sure always to talk to at least three different people about what medications I was taking, and you broke the pills up with a mortar and pestle when I couldn’t get them down any other way. You watched me for all of the side effects, without ever scare mongering me with letting me know what the rarest ones could be.
You found all the best people to help me, and when they wouldn’t, you did. You ran through physiotherapy programs at home, and you cut all of the legs off my clothes when I couldn’t bear them to touch my skin.
You took me to movies, you skirted around me in shopping centers so no one would bump into me. You also looked at more paparazzi shots of Harry Styles than any grown woman should ever have to. You raged at the doctors who were nasty to me when you weren’t around, and at the teachers who didn’t give me a fair chance, and you stood guard at the shower doors in hospitals where the locks had broken.
Then, when things looked up, you came to performances, drove me to hang out with my friends, and helped me when my homework felt like it was way over my head. You paid for vocal lessons when I’d decided I was going to be a singer, for acting ones when I thought theater was my calling.
You listened to me whinge about dismal prognosis and about being a pediatric in a geriatric ward. You hugged me when I cried, and you put up with me when I was refusing the medication you so desperately wanted me to take.
I was 16 when I was diagnosed with Ehlers-Danlos syndrome. You were there. You listened to me rant and rave. You reassured me. You comforted me. You let me know that this was rubbish, and that I was allowed to think so. You didn’t make me feel weak, or ridiculous, because I wasn’t as brave as I would have liked to be.
You helped me learn about adoption. You agreed with my decisions. You listened to me whine about them anyway. You never made me feel like I was faulty. You made jokes that other people frowned at, but that I (usually) thought were funny. You worked hard, seven days a week, to pay for more doctors, and you still did my washing.
You flew over to the other side of the country to start again with me, not for your own sake, but for mine, because that was where I would find the medical care I needed, and the educational opportunities you wanted for me. I decided I wanted to be an author. You read all of my work.
I had to have facial surgery. I was so scared of anesthetic, of scarring, of an RSD spread. I panicked when they put in the IV to put me to sleep. You came with me, even though you didn’t want to. You watched my eyes roll back even though you didn’t want to see. You looked after me, made me countless pieces of raisin toast in those next three days when I just didn’t seem to be able to shake the woozy feeling. You held my hand when they took the dressings off, and you let me moan about the scar on my face. You even let me cry when, not so long later, it hurt again because of a silly mistake I had made, without blaming me for it. (You did laugh a little, but then, I did hit myself in my scar with a jumper drawstring!)
My liver went wild. You reassured me. You promised I could have yours if I ever needed it, and even stopped using all the same things that I had to so that it would be in tip-top shape. You took me to more doctors, and never quibbled about how scared I was.
I was diagnosed with anorexia nervosa. You didn’t blame me. You helped me re-feed, and you monitored my weight so I wouldn’t have to. You tried to help me in the least confronting way possible. You sat with me after meals, and did the arts and crafts they do on the inpatient wards.
I am 18 now. I need you. You are here. I sometimes don’t acknowledge that quite enough because I never had to doubt that you would be. Chronic illness moms are cool, but I think you’re my favorite.
Love, Your Chronically Ill Child
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