Although Mother’s Day is almost over, I thought it only fair to pay tribute to all the mums of people with myasthenia including my own. I decided to do this after seeing the below image on Facebook – it is apt for my mum.
Children with myasthenia and congential myasthenia
Being the mother to a child with MG or Congenital MG is not easy. How do I know this? From talking to mothers who are frustrated/grieving/constantly battling for something. It all starts with the diagnosis – getting a child diagnosed with MG is an absolute nightmare from what I’ve heard. First of all if they are very young they won’t be able to communicate their symptoms and even if they are old enough to talk when it comes on they might not know how to or want to talk about it.
It’s hard enough for an adult to get MG, but imagine witnessing your child’s eye sight going double over night, their eyelid drooping, their limbs flopping, them struggling to breathe or them not being able to swallow any kind of solid food all of a sudden. Yet when you take them to the doctor, the symptoms may have passed. If they have a good doctor they might get referred to a neurologist who knows about MG. But if they have congenital MG, they might not have the anti-bodies that are tested for MG. They will have had to sit through painful tests to have no result because the hospital might not know about congenital MG.
Then once they eventually get that diagnosis, everything is a struggle, an expense and more difficult. They may have to fight for extras and have to hope that their child gets teacher and health care professionals who are willing to go above and beyond. Who are empathetic and genuine in their love of kids.
Then there’s parents of teens who have MG. Being a parent of a teenager is hard enough, from what I hear, but imagine the heartbreak of seeing your child struggling with the MG on top of all the other issues that time raises. Their self loathing will be particularly difficult to deal with – with my other hat on I’d recommend encouraging them to speak to Childline.
Imagine being that parent. Imagine the strength it takes to keep smiling with your child when they are being tested for all kinds of life threatening conditions. I don’t know how they do it and I bow down to them for their mental strength and the depth of their love.
Mums always see their kids as children
While I am grateful that my myasthenia came on as an adult, I know that in my mum’s eyes I will always be her little girl – fragile and in need of protection. As I have said before, she has been incredibly supportive since I was diagnosed.
Weirdly I have blanked the memory of when I first told her, but I remember the concern in her voice when I told her about my squint eye for the first time (mar 2013 – lasted 2 weeks then vanished. I didn’t get diagnosed until sept 13) and her constant checking after that about how my eye sight was. Perhaps her mother’s intuition warned her that something was not right, even although I know every time she asked she hoped there would be nothing to report.
Since my diagnosis, she has put the FBI to shame with her research, she knows my appointment diary better than I do and has kept tabs on my medication progress. She takes such an active interest that I know if I forgot something, she would probably remember it. She came to stay for a week and a half when I had my thymectomy, even though she was in agony with her hip, and came to the hospital twice a day to visit, brushing my hair and washing my face when I was in too much pain to do it myself. And since then she has supported my desire to be healthy and strong, always has gluten and dairy free food in for me coming home and asks about how I am getting on every couple of days. Not to mention, she is the number one reader of this blog – hi mum.
Basically, I am incredibly lucky to have a mother who is endlessly selfless and always ready to listen. It must be difficult to have your child diagnosed with any medical condition and each mother will handle that differently. If you are a mum and reading this I would hold encourage you to follow my mum’s example as a role model – research the condition, speak to others who have it/know about it, always ask your child how they are feeling and try to understand that if they are not willing to talk about it it’s not personal. They will come to you when they can but knowing that you’re there for them can make the daily battles that little bit easier.
Thank you mum and thanks to all the mums out there who always try to make life easier for their kids. We’d be lost without you!