Do I wish things were different?
Every now and then I see a little discussion on various groups I’m in. “If you could, would you take away your child’s disability/diagnosis?”
Every time I read it I am amazed at the variety of responses this question gets.
I don’t think there is a right or wrong answer. I don’t think any two answers are ever exactly the same.
I for one can’t even answer the question with any clarity.
I often wonder what Amy would say if she could tell me. I am not sure she knows she has cerebral palsy or is in any way "different". To Amy... Amy is Amy. I think. And that's how I try to see it.
I am a mixed bag. On one hand I am very pro disability, pro inclusion, very “we can do this” and we plough on as one amazing team.
But on the other hand is the side of me that says “oh wow, this is difficult, and it isn’t getting any easier.” The side of me that sees the horrible things my child has to go through in order to live a normal life.
Some days I hate Cerebral Palsy so much. The mornings where I can’t bend her legs to dress her, and she winces in pain as I try to gently help her.
The days where she needs a whole outfit change and she has to sit in discomfort until we can get her changed somewhere suitable. The days where she gets poorly and it manifests itself so much worse than it would for her able bodied peers. The days where I want to attend an event only to find there is no wheelchair access.
Other days; I feel intensely proud. The days where things go our way, the world doesn’t seem all that bad because what we need is there and we can be a happy family like everyone else.
The days where the seizures aren’t too bad, the days where there are no respiratory issues. The days where medical intervention is minimal and it’s smiles all around.
Sometimes I wish it would all go away. This week I have had a lot of time to be angry at life and how unfair it can be. Amy has been poorly now for two weeks. Prior to that she was also poorly for two weeks.
In Winter it can feel unrelenting. Just as she recovers from one illness another one strikes.
Sometimes I think I’m doctor mum. I have this inflated sense of self where I feel that I know my child best and I can 100% manage this from home.
We had almost a week of constant fevers, seizures, need for suction and so on. My poor girl lay there like a wounded bird. She would sleep day and night, not wanting to interact with us even one bit.
After 6 days we had to admit defeat, she clearly wasn’t getting any better. We hadn’t been able to feed her anything other than dioralyte all of this time.
When we got to the hospital one of the first words mentioned was “cannula”.
Immediately I started to hate Cerebral Palsy again. Inserting a cannula is getting harder and harder as she gets older - her veins have been used so much.
I am a bit squeamish about vein themed things and I was having to keep suppressing my dizziness and panic. It reminds me of when Amy was in NICU and I still had my cannula in from when I had my emergency c-section.
Once the pain relief started to fade away, I felt the pain in my hand and started to panic. I ended up hyperventilating through panic of this cannula. I know how irrational this sounds, but hey that’s me. So every time she needs a cannula I have this intense sadness.
Over the course of 3 days she had 4 different cannulas. She is notorious for knocking them out no matter how well bandaged they are.
She tested positive for flu (even though she had the vaccination!) and also c-diff. Even on IV fluids we're changing the bed and her clothes constantly.
They started her on antibiotics, she needed a little oxygen, nebulisers, and suction. It was just a parents vision of hell.
Those nights in hospital I sulked and I sulked hard. She was kept in an isolation bay, confined to four walls. I was freezing cold at night, roasting hot in the morning.
My skin hates hospital, my eczema flares on my hands and my eyes were all puffy and sore. We were both utterly miserable.
At first I welcome the take aways, the microwave meals, the pot noodles… but after a few days all you want is REAL food.
You want your own sofa, or just any actual comfortable chair. You want to feel fresh air on your face. You want to be able to drink a hot drink in any damn room you please.
I do enjoy being brought toast in the morning though - there are some perks in all of this. And I do love all of the nurses who provide a friendly distraction from the stress of the whole ordeal.
No one wants their child to suffer. Usually with the flu you would feel terrible for a while, rest, eat and drink when possible. But no, we were in hospital. And it’s the same story every year.
There’s always something that lands us in there. We missed Birthdays, parties, her Christmas play, so much.
For the first time in a long time, doctors expressed concern over Amy’s weight.
It’s an issue I am sensitive about as we work so hard to get calories in her. She moves constantly, she is always burning calories.
She can’t tolerate high volumes, and most formulas and blended diets are too rich for her to digest. So she gets by on very little calories in spite of being on 24 hour feeds.
Her poor little body looks emaciated. Her ribs, collar bones and spine all stick out. Another worst nightmare for a parent.
I want her to feel full, and well, and nurture her. It’s one of the most primitive aspects of parenting - to watch your child thrive.
She has had so many days of not being able to be fed recently, it’s like I can see all of our hard work wasting away.
She is home now and slowly recovering. Her energy levels are slowly increasing, and her face is starting to show colour and joy again.
So in this respect yes, yes I would take her diagnosis away. I would let her have the skills to cough strongly and handle a cold/flu like others do.
Some argue that the disability their child has is what gives them their strong character and personality.
I sometimes wonder how Amy would be had it not been for her Cerebral Palsy. I still think she would be feisty, bossy and demanding. I still think she would be sociable, determined, and cheeky.
I still think she would have that amazing inner strength to overcome whatever is thrown her way. I know part of her brain injury affects her moods and behaviours, I wonder would she be a little more stable with her mood swings.
I know that she wouldn’t have epilepsy, and that would be cool.
I suppose time spent wondering what could have been is time wasted.
Sometimes it can be hard to live in the moment and celebrate where you are today - because sometimes you’re sat in the parents room of the local hospital at midnight for some reason drinking coffee and wondering why life is so unfair.
We just have to wait for those moments where actually everything is stable… and reflect back on those hard times and how we all made it through.
I would take the pain away. I would take the seizures away. I would take the feeding issues away.
So many people focus on the not walking/talking/eating thing. But I think actually when you are in our situation all you want is for your child to have an excellent quality of life, never ever feel lonely, be able to communicate, and to make fantastic memories with those who matter.
People seem to associate wheelchairs with a low quality of life. But actually no, there are many people out there with mobility impairments living absolutely wonderful lives.
A wheelchair does not symbolise being "bound" or "confined". It symbolises freedom, accessibility, and is exactly like you and I walking.
Amy has never shown to me that she wishes her Cerebral Palsy would go away. I am sure there are many times she feels angry and frustrated by her limitations.
But like any child, she adapts to her situation accordingly and finds ways to do things and love life.
She is the most resilient, resourceful, bright person I have ever known. I couldn't be more proud of her.
If my child is happy. We are happy. If she is struggling... we all struggle. But we would do anything and everything to make things right again. Just like any good parent would.
So would I change things? Both yes, and no.