Those words are never more true when you’re plodding along happily like every other parent does. Usual routine, play days, activities with friends and family, fun days out.
The path you’re on is smooth. A couple small bumps but feels comfortable on every step you take. Then…
It’s like the ground has crumbled around you and the path has turned rocky with jaggered edges, beginning to tear into your feet as you cautiously move forward. The ease you once felt becomes a long lost memory and you feel like one slip, and you could fall down a never ending tunnel engulfed in darkness.
I was no stranger to having a child with additional needs as my son Jack was diagnosed with high functioning Autism at five years old. So when one of my identical twin girls Shannon got diagnosed with Spastic Diplegia mild Cerebral Palsy in her feet when she was four years old. She soon adapted well and so did I when special shoes made a huge difference along with the reassuring words from the doctor “it’s mild, she is the luckiest little girl.”
Who knows, maybe we used up all our luck because six months later Shannon wasn’t feeling like a lucky little girl. Screaming out in pain as it crawled through her body like a freight train crushing her. Fevers raging and violent vomiting that turned her so frail.
Shannon watched her twin Stacey growing away and into the school girl she so wished to be. The only comfort coming from the sofa which was becoming the main activity of her childhood.
Stacey on the other hand was dealing with the heartbreak of watching her twin desperately ill unable to even play or engage with her those care free days were becoming distant memories.
The enormous guilt weighing on her young shoulders knowing she was a constant reminder of all her sister missed out on. Both girls having to deal with emotions and experiences that even adults couldn’t be prepared for mentally, let alone at such a fragile age .
Feeling so helpless
The medical profession shrugged their shoulders as my little girl deteriorated before my eyes. Doctors would smile as tests would come back clear, but new symptoms would develop.
Every month sore throats, visual disturbances, insomnia, stomachs pain, chest pain. You try to deal with one and it was like they were their ganging up on you. Just endless.
There was no sympathy from the doctors. They believed it to be a bug or virus but when they gave up on that theory, they said “she wants attention”, “she must be mentally ill”.
The next accusations that came was maybe I wanted her ill, so psychology sessions had to be her in a separate room in case I was prompting her. They were drawing at any short straw to give their perspective on the answer.
Our family life was falling down around us and felt like we stepped on a roller coaster and can’t find a way of slowing it down to get off.
Eventually after so much head banging with the medical world, I love to say answers came, but as I soon found out with M.E. Myalgic Encephalomyelitis, there are no proper answers.
No known cause identified and no known cure possible as yet. In fact it a mystery illness. All that is known is it a multi system disease that causes dysfunction of the neurological, immune and endocrine, as well as the energy metabolism system.
A complex explanation but not enough to achieve recognition or adequate funding.
So my child joined the 17 million in the world who have been devastated with this.
How to cope
So now as Shannon is eleven years old, our lives is dictated by her illness twenty four hours a day. Saving her energy to prevent her relapsing so she can still maintain some precious childhood enjoyment.
Party invites , family days out etc must all be run like a military operation no small detail over looked. The risk of a fun day in the park could push my daughter to be confined to her bed and with sixty symptoms that can develop. It a risk too far.
Everyday her life is run around high and low energy activity .
We lost our normality since M.E invaded our life. It feels like a hidden grief. No one can see it or understand it.
There is no way to describe the pain inside. How it aches so much to watch your child have to compromise her childhood like she was some frail old lady. All her compromises are what healthy children can take for granted. She has limited schooling because M.E. doesn’t credit education.
The guilt inside when you see your child laughing and happy and you have to stop that because the fear is too great. When all you dream of saying is “run and play to your hearts content.”
These are now words I say in my dreams .
Determined to smile
Inside I never feel peace with M.E. For all it stole from Shannon and all the family. It tries to deny us so much. When I look at Shannon and all my children and think of journey they been on. They’ve been so courageous, they still manage to live, laugh and enjoy life.
They never ever allowed M.E. to take this away from them, and as a family we never will. It doesn’t determine our lives. We will always fight this illness.
With every breath my little girl will still remember her childhood with joy in her heart.
I'm Aimee, and this is my daughter Emily. Emily has spina bifida. I have always found talking to other parents or people with disabilities reassuring. The disabled community is the best community to be part of. I created Rollin' With Mama so we could all share experiences.