Welcome to March.
Can you believe we are into the third month of 2018 already?
How we perceive time always amazed me.
The last four years for me has both simultaneously flown by, but also felt like my entire life thus far!
So, it’s cerebral palsy awareness month; yes, a whole month dedicated to raising awareness to what I feel is best described as a neurological movement disorder.
Those of you who have followed my posts over the years will note that I like to reflect on the day we received Amy’s diagnosis; however, I’d like to talk if I may about the now.
Because back then, in those early days…. I had no idea how today would look.
I often wonder how I would feel if you told me back then how things would be right now.
We have overcome and been met with so many unexpected challenges along the way, and I’d like to think that in the face of adversity we have always prevailed.
Amy turned 4 recently and this feels like sort of a huge deal.
Not only because each Birthday I reflect up on (and have a secret cry about) when we were told that she may not make it through the night.
It also feels like a huge deal because this is the year she starts school.
Where does that time go?!
Sometimes I look at photographs of her from a year, two years, or three years ago… and it feels like a different life.
Those pictures don’t convey the probable turbulent time we were having, but also just how many mini milestones she was achieving.
We were fortunate enough to overcome a terrible housing issue and now live in a beautiful little bungalow.
We don’t own it – we sold our house.
If you’d told me back then this is what was in store I would probably have broken down crying.
I would have sobbed my heart out.
But when it came down to it we knew it was the best thing to do and we accepted that from now on every decision we make is “what is best for Amy?”.
Back then I never knew how Amy’s cerebral palsy would manifest itself.
I remember being told that “no two people with cerebral palsy are the same – you simply cannot compare”.
I would spend hours at night trawling the internet, desperate for information about what was to come.
It’s such a cliché but the absolute hardest part of all this is the not knowing… the inevitable “wait and see” conversation.
You’ll want every MRI and test going to help you understand your child’s brain and how its developing… but you will learn that really, the best way to learn is from how the child presents.
Our main battle lately is movement.
Those muscles of hers – they never stop!
Amy has athetoid dyskinetic cerebral palsy.
Even if she wants to relax; her body does not allow it.
Even in her sleep she wriggles a lot, and the tiniest touch will startle her and set off a whole range of movements.
I sometimes lay in bed as still as I can, and I wonder how it must feel for all of your limbs act out in a way you didn’t desire.
It must be so frustrating trying to control those movements and spasms.
We are in the midst of trialling a new medication to help with her athetoid (involuntary) movements.
Would you believe the main side effect (which isn’t even a common one) is insomnia?
Not just a little bit of waking up here and there. but full on wide awake for the entire night.
It has been horrendous beyond belief!
The solution for this?
Of course… another medicine!
So far it works and I am finding that her movements during the day are in fact a lot more purposeful and controlled.
It’s a great feeling.
In the past, any talk of new medication, new intervention or new equipment would fill me with anxiety and grief; these days it’s a welcome change… something that may make life a little less challenging for all of us.
The downside is the pre-bed time tantrums.
I often joke with friends about how “I’m scared of a four-year-old”, and to an extent yes, it is funny.
But the reality so far (if you’re not super careful… or lack of sleep impairs your reflexes) is black eyes, nose bleeds and a fat lip.
I am not exaggerating when I say we struggle to dress her sometimes.
It’s a real problem.
Our next welcome intervention is the involvement of orthopaedics.
I intend to arrive at the appointment armed with video evidence of our current challenges (something in the past I may have overlooked… one thing in four years… I definitely got a bit smarter and better prepared!)
I wonder what I would have liked to have read back then about 4 years into this.
I’d want to know that I could do this and that I’d get through it, and that she would have the quality of life I was told she may not ever have.
It’s all true.
All of it.
You still cry, you don’t want to fight, but you will.
There will be days where you think you’re not good enough and you wonder how you’ll go on, but you’ll do it.
When you see that smile, that look on their face, your heart will melt and you’d do it all again a thousand times over.
You’ll meet people along the way that have been though similar things, you’ll make friends… you will find a support network and a place to have a moan.
It’s a world you never knew existed, but it is one that once you are part of it, you’ll be glad that you are.
I am privileged to be the mum of a little girl with cerebral palsy.
On the tough days I forget just how incredibly lucky I am.
The tube feeds, the meds, the splints, the equipment, the appointments, the physio, the paperwork… all of it… fully worth it.
I want everyone to know how much my life is now directed towards raising awareness, improving inclusivity and accessibility, and challenging perceptions.
I want to be the best advocate and mum I can be and even though I can be self-deprecating and nervous, I know that I am doing my best for that incredible little child.
Amy, her incredible daddy, and I are one hell of a team.
One thing I have not learned, by the way?
Is to find something green to wear!
I am useless at remembering to wear the right colour or thing for an awareness day!