You’re bound to have heard the expression: “Live everyday as if it were your last”.
I remember hearing this as a child and feeling very confused. If I knew I were to die that day wouldn’t I be panicking about the fact I am about to die? Why would I want to live life that way?
A few decades on and I kind of feel much the same about it.
Sadly, mortality is on my mind a lot at the moment. It’s something I try to push to the back of my mind constantly, but it somehow always resurfaces and plunges its roots into my consciousness.
You see; my child is in a bit of a grey area when it comes to life expectancy.
I’m not entirely sure where we fit in, and it isn’t for lack of trying to find out. No one holds a crystal ball, no one knows how long anyone is likely to live.
But I spend a lot of time wondering how my child’s cerebral palsy diagnosis is going to manifest itself in terms of how long we get to have with her.
There have already been several times where I thought we might lose her and I live in constant fear of what might happen. I feel so fiercely protective of her and love her so much, I can’t imagine the world without her.
My daughter is on the severe end when it comes to her cerebral palsy.
Call it what you like, GMFCS 5, HIE grade 3, whichever. She has epilepsy which isn’t entirely controlled, and her respiratory system really struggles with any kind of common virus.
Each time she has an illness I have taken it for granted that she will eventually recover and order will be restored.
But deep down I know that this may not be the case forever. Infections are harder for her to shake off, IV access is fast becoming an issue - without access how will she receive hydration when we can’t feed her, or to receive vital life saving medications?
Then I start to worry - are ports in our future, central lines… hospitalising interventions. Will it mean as time goes on we will be spending more and more time in hospital?
I’m not sure how many more times I can hear “it’s not good news”.
She is at risk of hip dislocation (already tight on one side with a minor leg length discrepancy) and scoliosis.
She has fluctuating muscle tone and low density bones, this can put her at risk of contractures, fractures, all kinds. Her dystonia affects her daily and her postural needs are on the increase.
She is life threatened. Some have said she won’t live past her 20s. Some say she will have a normal life expectancy. I have had many different prognoses.
So. Live everyday like it’s your last. It poses a quandry.
Do I make a bucket list and frantically try to achieve those things? Do we focus solely on making precious memories and enjoying every moment?
Or do we relax, keep our composure, and face each day with deep breaths and gratitude without avidly forcing anything.
Do we limit medical interventions and trialling different meds or do we desperately seek out as much as possible to make her life more comfortable, or even prolonged? Do we aggressively pursue daily physio or do we do the bare minimum in favour of having as normal a life as possible?
I am so scared of looking back in the future and wishing I had done more. Or done less.
I already look back 5 years and wish I had enjoyed her smallness. Enjoyed how easy she was to cradle in my arms and rest on my lap.
I was lost in the stress of it all. I was overwhelmed. I wonder if I did it all again knowing what I know now, what would I have done differently?
I try not to agonise over regrets, I try to get by one day at a time. I don’t want to take anything at all for granted.
I want to appreciate every moment, even the really hard moments. I want to look back and know that I did my best and that no matter what decisions we make for Amy as parents, that she knows it was all in her best interest.
All we ever want for our children is to be pain free, happy, to know how loved they are, and to enjoy their childhood.
It can be hard to provide an amazing childhood when you spend so much of it in an over medicalised setting, where almost every part of your life involves equipment.
I have to try and look past that, acknowledge her pain, do my best to lessen it, but accept that I am not magical - I have no cures, I’m just another special needs parent trying to be just a parent.
I hope she grows up knowing how much she matters, that she is appreciated, adored and admired.
I hope she knows that she is valid. I hope she knows that whilst she may not communicate in the usual way, that her opinion and voice still matters as much as everyone else's.
I hope when we aren't around that she still feels confidence in herself and is still happy, and that those around her will support her as much as we do to make sure she is getting the best out of life.
I wonder - am I making adequate use of my limited energy resources?
Do I continue to advocate, raise awareness, educate and kick up a fuss. Or do I need to become more peaceful and accept that maybe just one person can’t make that big of a difference and try not to get worked up over the ignorance of others with regards to disability.
I also see how much families like ours rely on charities - I so much want to help them, raise loads of money, and help others.
But equally I need to accept that we qualify for these charities for a reason and actually I might need to sit back and accept the help so that I can focus my energy on the 24 hour care that Amy needs and deserves.
I am learning everyday, how best to find the balance.
The mum guilt will be there no matter what I do - if I let her watch videos for ages, I'll feel lazy. If I deprive her of the videos I'll feel mean. That's just one example. Our days are filled with complicated decisions as varied as YouTube time, to whether or not brain surgery will be beneficial.
I am slowly learning to be kinder to myself, to know that I am trying my hardest, even when I feel like a complete failure.
We receive help from a local respite place, but have recently applied to the local hospice. It is something I have deferred for a long time thinking maybe we weren't severe enough, or that we can get by without that support.
I'm not sure yet where we stand with it, but it will be an interesting and emotive journey for us either way.
I look forward to hopefully being able to spend time as a family in an accepting, happy, accessible environment where we can be enabled to make more memories together.
Thinking about these things often sends me into a guilt spiral for ever complaining about how hard things could be.
There could one day be a day I yearn to be woken up several times by an alarming feeding pump. There could be days I wish I could hear her tantrum cry.
It's all relative though, I have to tell myself, being stressed at these things is a normal response, it doesn't mean I love her any less or that I don't care.
I know that however long we have be it 10 years or 50, who knows, she will have taught me the meaning of life and shown me more than I ever could have expected to learn.
Our children with additional needs open our eyes to a world we may not have known was there.
They make us more resilient, more patient, more grateful. I have never felt so many raw emotions, sometimes all at once, as I have felt whilst waiting to know she's okay after a surgery.
Or the relief I have felt when she comes out of a seizure and makes eye contact again.
I have never burst with so much happiness and love as when she smiles at us or laughs at something.
I know that the subject matter of this post may not be the most positive or uplifting, however, I do feel it's a dialogue that is important to open up.
Infant loss, end of life care, hospices, being life limited, having a chronic complex diagnosis.. whatever it is... is something that can take a huge emotional toll in a family.
In some ways the subject is rendered taboo. We refrain from mentioning it to many of our close friends and family as we know it could bring people down or make them feel uncomfortable.
But sadly it is uncomfortable, it isn't always nice, but the less we talk about things the more isolated we can become.
I urge anyone going through similar to us to visit a GP or seek counselling if you are struggling to talk about the challenges you're facing.
We have to look after ourselves in order to look after our children and I think that starts with good mental health and good communication.
I panic most nights when I go into her room to do her last feed change and meds that she is too still. I linger close to her feeling for a heart beat.
As the heart beats and reassures me, I am reminded of how incredibly precious this small human is.
I breathe in her warmth and smile down at her angelic resting face. I feel my heart beat faster in gratitude for her existence.
The beat is a reminder of the time she was born with no heartbeat, requiring resuscitation, ventilation, and thus sustaining a severe brain injury.
Both fierce love and despairing grief consume me. I whisper good night to her, close the doors to her bed, and exhale deeply and think how forever indebted I am to those doctors who saved my little girls life… and may do again one day.