I’ve learnt an awful lot on my parenting journey so far. I’ve learnt skills I thought only nurses needed, I’ve learnt more medical terminology than I ever imagined my brain could absorb and I’ve learnt what it really means to be strong.
Every day brings new challenges. Some big. Some small.
I find myself learning new things all the time. Every week brings new realisations. Some weeks bring sorrow. Many weeks bring hope. Occasionally some days bring joy.
My most recent realisation and one that has hit me particularly hard is the number of times I find myself apologising to my child on a daily basis. To hazard a guess I’d say I apologise to him at least 30 times per day. Imagine apologising to your child more times than you tell them “I love you”. I apologise for so much that happens to him that is completely out of my control. I apologise for the discomfort he experiences daily, even if some of it is to aid his relief.
I apologise when I have to suction secretions from his nose and mouth for the fifth time that morning. I apologise when I’m stretching his stiff and dystonic limbs in order to try and bring them into a more natural position, if only for a moment. I apologise when he suffers his 20th seizure that day and I’m completely powerless to stop them. I apologise for changing his nappy as the position I have to hold him in to clean him properly brings him temporary discomfort. I apologise as I place him into his chair, car seat or pram as there is a limited range of movement in his hips and it is uncomfortable for him when I sit him down. I apologise as I strap him into his shower seat as his trunk and head control is almost non-existent meaning he needs to be fully supported during the simplest of tasks.
The word sorry seems to roll off my tongue more than any other word in the English language when I’m talking to my child. I imagine I probably don’t even realise I’m doing it half the time. Occasionally though, there will be times that tears will be rolling down my face as I stand by a distressed Jaxon, apologising profusely for his ongoing battles.
I’ll pop on my medical hat and run through the long list of what it could be this time causing him to be so unhappy, feeling like a failure as one more I can do nothing but apologise again as I wait for him to become so exhausted he falls asleep. In that moment he has relief from the pain and I can relax, I’ll bend down to him and whisper “I’m sorry” into his ear as he sleeps peacefully.
When I first met Jaxon at eight hours old when he was wheeled into my side room on the postnatal ward before being transferred to another hospital, the first words I said to him were I’m sorry. I was so terribly sorry for the fact he’d had to endure a prolonged resuscitation and that his prognosis in that moment was terribly bleak.
I was sorry that his start in life was worlds away from the one I’d dreamed of when I was carrying him for over nine months. I was sorry that at only a few hours old, he’d suffered more than many suffer in an entire lifetime.
There is nothing worse than knowing your child endures extreme pain every single day of their life. It’s my heart-breaking reality knowing that, as his mum, I am totally incapable of making it all better for him.
Possibly the most difficult thing to accept is that Jaxon has very little understanding of what I’m saying to him. Partly due to his age but most probably largely due to his brain injury. He doesn’t understand that when I’m stretching his joints it’s for his benefit, to prevent contractures and further discomfort later on in his life.
He doesn’t understand that the pain he suffers on a daily basis I can’t do anything to prevent. He doesn’t understand that we are trying so desperately hard to successfully treat and fully alleviate the seizures he has to cope with every single day.
I can only hope that he knows how deeply loved he is by everybody around him, none more so than me. I hope he is able to feel comforted when I’m telling him how incredibly proud of him, I am and how much I adore him. I hope one day he’ll understand that if I was able to switch places with him, to give him a life that he fully deserves and all the lovely things the world has to offer, that I’d do it in a heartbeat.