My daughter is 5.
When I think back to my ideas of what parenthood was going to entail, I imagined our biggest decisions at this point to be about which dance class she attends, where we should go on our family holiday abroad, or should she start rainbows or some other club designed for children her age.
Special needs parents are under an immense amount of pressure to do what they feel will benefit their child.
You can gather as much information and advice as you like, but at the end of the day it is you that makes the ultimate decision. It's terrifying.
It's the same with other things - do we send our child to a mainstream school or a SEN one? Do we spend lots of money on additional therapies or do we just continue as we are? Will we feel like we made the right decision? Will we feel guilty no matter which option we choose?
So instead of choosing which dance school to go to, our most recent choice to make is whether or not we think she would benefit from brain surgery. BRAIN SURGERY.
I'm sorry but there is nothing scarier than signing a form to authorise someone to drill into or cut a hole into your child.
There is no nice way to put it - surgery is surgery.
So in this world of cerebral palsy I have learned that it can manifest itself in a plethora of different ways. For Amy it is mainly characterised by constant unpredictable strong and fast movements.
It means she cannot walk, it means that she has no fine motor skills, and it means that she has to work very hard to press a big button on a toy.
She is to some extent aware of her limitations but also gets very frustrated too. I read once that as much as 75% of people with cerebral palsy experience pain related to their condition.
Knowing that Amy is on the severe end of the cerebral palsy spectrum (GMFCS 5), and knowing that she can be very irritable and distressed - I am under no illusion, I know that she is in pain. It breaks my heart.
She has been through so much. It is staggering even just looking at her hospital records they bring out each admission.
No child should have a hospital record the size of a Shakespeare's entire works anthology! She is so resilient and strong and I burst with pride everyday, but at the same time the anguish I feel internally that she has to endure any of this really eats away at me.
I SHOULD be signing her up to new hobbies, not counting seizures, or drawing up countless meds.
I remember thinking our biggest decision was whether or not to have a gastrostomy inserted. I remember agonising over this for a few months and constantly changing my mind. I remember the lack of sleep, the buying books, the frantic online research, the constant questions on social media pages.
This year she has a second tube site inserted (a jejunostomy) which basically means she is 24/7 fed into her bowel. Her stomach struggles digesting things and it has helped her reflux massively.
I thought once this was done we wouldn't be contemplating any other procedures, I thought we could just carry on and hope that there are no hip or spine issues further down the line.
Prior to all of this I had assumed that if someone had a medical condition or disability, a doctor would tell you what needs to be done. I hadn't realised actually, they can give you all of the information but it is up to us to think it through.
The surgeon/neurologist was so lovely as was the physio who was also present. They explained things about Amy's movements with such accuracy and I felt so relieved to have someone assess her and not ask "is that a seizure?" or "is this movement normal?".
They validated our struggles and were impressed at how we manage to safely transition her and care for her everyday.
Sometimes when you just plod on daily you overlook the fact that actually this is difficult stuff, and you're doing great!
We have exhausted medicinal options to help with her movements except for one. So, we are going to trial that and then meet in a year to discuss the surgery and if we want her to have it.
It's called deep brain stimulation - it isn't guaranteed to work, and it can be risky with children that (in their words) "has a lot going on" (ie. seizures, has two feeding tubes).
We also discussed her having a baclofen pump but this is a surgery I am hoping to avoid as her tone fluctuates and she has baclofen as a medicine already.
We discussed her various movement patterns and issues, a few mentioned were dystonia, chorea, athetosis, spasticity, hypermobility, tightness on one side, and many more. It was a lot to take in but I am pleased to have heard someone echo to me the things I had read already and thought "hey, that's our Amy.. I'm sure she has that".
On a lighter note - it does make me laugh when I go out for food and can't choose what meal to have. Or when deciding a family day out venue, none of us know where to go.
It's like my ability to make decisions, even simple ones, has been compromised under the weight of life's many pressures!! We never want to make a bad call, even when it comes to a burger and chips.
You would think I would welcome the easy decisions, but I don't. (Always choose pizza... you can hold the slice in your hand easily whilst dealing with an angry child!)
Someone with my lack of conviction shouldn't be allowed to call the shots, though it has made me a better informed person, it makes me think of pros and cons and weigh up options carefully. (choose the salad cez, your body is crying out for nutrients!)
So what will we do?
Well it remains to be seen. I don't want to get my hopes up about the next medicine trial.
I worry with anticonvulsants and dystonia meds that their main thing is the slow the brain's activity down - we don't want to help her movements but then have her mainly sedated and not "all there", we have had this problem before and it's horrible to watch her sat there just existing when we know she is capable of so much more.
Part of me wants to say "nope, she is never having that surgery, it sounds truly horrendous and I can't put her through it". But if I make that choice - things won't ever change for the better.. she will get bigger, stronger, heavier, but with all of the same severe movement problems.
What if it means she would be in less pain? What if it helps her get better control and improves motor skills? What if it improves her posture and means we can use an eye gaze?
But.. what if she gets an infection, what if it goes wrong. You can see how my mind would be drained from all of this.
It isn't just decisions about procedures. It's everything.
"Hmm, her secretions are bad today, she has a bit of a temp.. should I take her to the GP or can we manage this from home?" - that's a constant one for us. The fact we have only had 3 hospital trips in as many months is testament to the fact that Phil and I have worked very hard when need be with the nebuliser, suction, and whatever else is needed to keep her comfortable and home.
Obviously there are times where she needs intervention we can't provide from home, but making that call is so important. Or timing a seizure that gets close to 5 minutes - is it ambulance time? Then agonising over all of the potential triggers and wondering why it happened, and knowing you'll never know.
And it isn't just us.
All over the world there are others agonising over life changing decisions like this. There are so many emotions - hope, anger, fear, panic, sadness, anguish, bitterness, optimism.
I feel at the moment like my mind is oscillating between all of those things. Wondering what could be, but being scared of losing what we have. What works for one person may not for another, our complex needs kiddos are all so very different and respond differently to treatments, there will never be any categorical and "obvious" choice when it comes to these matters. Some of the things we've had done for Amy turned out to be the wrong decision but the best ever for others.
You just don't know. We don't want to gamble with our children's health and well being.
There is no doubt, some parents reading this whose children have endured several brain surgeries, ones perhaps that they HAD to have for their child in order for them to live.
I have so much admiration and respect for those families, I can't imagine the wait during surgery waiting to hear that everything went okay. I hope that my blog about potential surgery doesn't undermine the very real battles many will have had with such surgery, but for us right now, this is a big deal!
All of this being said though - I hope that in the future Amy understands that all of these things were to help her.
I hate when it's post op and she's upset and in pain and I can't explain to her why it has happened and why she is hurting. I hope one day the cognition is there to know that mummy and daddy only want what is best for her and that if we could take her pain on ourselves and for her to be fine, we would in a heartbeat. That would be the easiest decision I ever made.
I'd love to hear stories from others about difficult decisions they've had to make and how they overcame it and how it ended.