|(Title Image: Childhood photo of me during Physio, standing with a walker)|
I don’t recall a clear cut day that either of my parents sat down to break the news to me, “Fi, I’m sorry to have to tell you this but you have a muscle disease.” I guess that’s how one would expect to be given such a revelation thanks to the movies!
No, I always knew. My parents were very open about my condition. They’d told be bits and pieces (age appropriately) from since before you retain memories, mainly before age 3 I believe. There was no way they could hide it from me or wrap me up in cotton wool to make me believe I was equal to other children. My early childhood was filled with hospital appointments, extensive physiotherapy and even after I started walking unaided. Around age 4. I kid you not, the wind would knock me over. Anything above a mild breeze and I’d face plant. More often than not, on concrete! I walked with a waddling gait too which made me a huge target for bullying.
|(IMAGE: Me, 3 1/2yrs during extensive Physio. Just diagnosed)|
But I’m glad my parents were honest with me. I see a lot of modern day parents of children with disabilities, strive so much to give their little one a ‘normal’ childhood, that it ends up backfiring sadly.
My Mum explained it to me from around 4 years old, until I started having questions of my own as a pre-teen, that I simply had ‘poorly muscles.’ I was born with muscles that were poorly and that meant I fell down a lot and had to go to the children’s hospital for check-ups. At that tender age I think that’s all I really needed to know! I never asked why, or if I was going to get better. Many children do though. I think not asking those questions, even as I grew older is more of a personality trait of mine than anything. I’ve always been very accepting of my limitations. Right, my muscles don’t function like other kids, what’s for tea? Knowing why or dwelling on what I couldn’t do would of been unproductive. Though my Mum did anticipate me asking ‘Why me?’ at some point, so instead of waiting for me to come out with one of the hardest questions a child can ask their parent… She told me from day one that everyone is different, everything happens for a reason (even if we don’t know what that is in the moment) and that I was special.
Now days being termed as special, is frowned upon in the battle of equality and the ever growing ablism. But as a child, my parents telling me I was special, did me no harm. In fact them using the term special in the unique sense probably helped me stay away from negative thoughts that being different was a bad thing.
|(QUOTE – “Special needs parents unite. We’re all in this together. Nobody should ever feel alone.”)|
As a child, my rare type of MD known as Multiminicore Myopathy wasn’t covered by any umbrella charity. My Mum, a great advocate for me way back when, brought this rare form to the attention of Muscular Dystrophy UK (formally the Muscular Dystrophy Campaign and paved the way for easier access to information on the rare disease under the charity. I am so proud my parents did that, they didn’t want other parents with a newly diagnosed child feel the way they had when I was diagnosed. It’s hard enough having a child diagnosed with a life-limiting condition, without finding next to no information on it or means to find other affected families. Enter me and the first ever person I met with Multiminicore Myopathy founding ‘The Minicore Project’ in 2011!
Fast forward to my early teen years, after losing abilities in childhood I was ready to know what was actually happening to me. My Dad saw this coming for years and I do remember very vividly asking him for more information. I wanted to know all THEY knew at this point. Dad grabbed all the medical literature he had a liberian obtain for him from actual medical books, which wasn’t much. A paragraph on the condition from one book, a paragraph or even just a sentence from another.
First he went to town on drawing a big diagram of the inheritance pattern connected to it. I think my parents feared I’d blame them for causing me suffering, but of course I never thought of it like that. It wasn’t their fault! It’s such a rare type of MD, that there’s currently only 2,000 documented cases worldwide. It skips generations and there was no one person in our family tree that had any muscle problems. It was purely the roll of the dice. He showed me the medical literature, warned me of graphic pictures of other children with skeletal deformities caused by the muscle weakness such as scoliosis and severe joint contractures. He even had a medical dictionary and tried to explain everything these extracts were telling us. Back then, Multiminicore Myopathy was deemed a static illness, meaning the degree of disability shouldn’t worsen.
It wasn’t until around 2005 that articles started popping up on the Internet of how Multiminicore can be static or slowly progressive. That individuals usually have a shortened life expectancy and die of either respiratory failure or Cardio Myopathy as the lung and heart muscles were now identified as being affected. It was frightening finding out the worst details of this type of muscle disease through my own research as an adolescent. Then learning mine was in fact slowly progressive. I’m glad I found this out nearer adulthood, expanding my knowledge along side newer research. It would of been exceptionally painful for my parents if they’d of known when I was little that I may not of outlived them as children should. So that’s a blessing.
I don’t think there’s a right or wrong way of telling a child they’ve got an incurable muscle disease. It depends on a number of factors including that child’s coping ability, age and maturity, having solid facts on the diagnosis, personality traits and how the parent is able to handle questions etc. Parents know their child and whatever way they choose to explain things and when, is done with such agonising thought and precision.
I have chosen to use the same approach as my parents did, but with my own children. Originally planning not to really disclose much about my condition incase it frightened them until they were much older, I soon realised that due to all the respiratory and personal care I need in the home setting. I can realistically only mask so much. My eldest started asking questions (beyond the wheelchair) around age 3. For now going through age appropriately the function of the muscles in our bodies and explaining I have “poorly muscles,” just as my Mum had said to me – works! It’s still giving her that little bit more information to quench her curiosity about Why exactly my legs don’t allow me to walk, but leaves out the things that I feel would be inappropriate to tell her at just 5 years old.
If you’re reading this as somebody with a medical condition you were made aware of as a child, feel free to contribute your story to learning about your condition in the comments below 👇
This blog post ‘How My Parents Told Me I Had MD’ is part of the following blogger linkys; #blogstravaganza