A few days ago, I was mindlessly scrolling through old videos and pictures on my phone whilst lay in bed, struggling to sleep after another day of the same routine.
I stumbled across a video of a three-month-old Jaxon. He was lay on his front, pushing himself up and holding his head up with a confidence that I don’t ever remember him having. I continued to scroll. There was another video of him doing much the same. Then another, only this time he was clearly moving his legs in a way that he was trying to gain some momentum to roll himself over.
Until that moment I hadn’t realised quite how much Jaxon has regressed. It’s been a gradual decline and I’ve been so busy with life that I’ve not noticed what is staring me right in the face. Jaxon’s development hasn’t progressed, if anything it has gone backwards.
I spent the next 90 minutes or so in floods of tears. I watched the videos over and over, like some sort of torturous routine that I couldn’t detract myself from. In that moment I was punishing myself and I don’t really know why.
“Where have I gone wrong?”
I was so angry with myself. “I should’ve tried harder. I should’ve done more” these were the thoughts that were racing through my mind that night.
“I’m not good enough” that’s right, I felt that I was not good enough to be Jaxon’s Mum. In all honesty if you were to ask me if I feel good enough now, I’d likely still tell you that no, I’m probably not good enough for him. My confidence is at an all-time low and I spend a lot of my time thinking I’m out of my depth.
I’m only too aware that I won’t be the only special needs parent, or even parent with those thoughts.
The reality is Jaxon has intractable epilepsy. He was diagnosed with infantile spasms a year ago and we never managed to gain control of them. He is now on three medications to try and get his seizures under control. Yes, that’s correct - THREE. Add into the mix he has a severe brain injury from birth that causes him to have extremely chaotic and disorganised brainwaves, there’s probably a lot more epileptic activity going on that I’m not even aware of. He has a movement disorder. He has ongoing feeding issues that we’re only just starting to get on top of. He has metabolic bone disease. He has a visual impairment.
If I’m honest with myself, I’m all too aware that all of these things were totally out of my control, I couldn’t have possibly done any more than I have to try and get these issues resolved. They’re also likely to be the main reasons that Jaxon’s development has regressed.
So why am I questioning if I am enough?
Why am I having these fleeting moments telling myself that I am not enough, not even close? Why am I punishing myself? Why am I spending hours upon hours torturing myself?
I’m not sure. Maybe it’s part of the ongoing process of coming to terms with how life looks now compared to what I imagined almost two years ago. It’s a journey and there’s no real destination in sight, we just navigate our way through a field of unknowns, looking for ways to resolve challenges however we can.
So how did I overcome these feelings? The reality is I haven’t. I’m still battling an unhelpful and damaging daily internal dialogue. I’m still feeling that I should’ve done more when Jaxon was younger. There’s little I can do to get away from these feelings. I thought to myself, if I’m struggling with thoughts like these then it’s possible those closest to me are struggling too. Not with the same feelings of course, but with their own internal dialogue throwing unhelpful thoughts at them. I quickly realised that those in my life are probably quietly waging wars with their own minds, their own insecurities and their own troubles.
I’m a fixer. I always have been. I like to make people smile.
So, I did a spot of online shopping and sent some surprise gifts to those closest to me, particularly those who have helped to carry me through the last very difficult few months. Not only would it hopefully help make them smile, it made me feel good. It distracted me from that unhelpful internal voice that I am desperate to remove yet that I’m struggling to even quieten at this moment in time.
As the thank yous started rolling in over the next few days, little did those who were thanking me realise that I was so much more thankful to them than I could ever express. Thankful for them listening to me. Thankful for their reassurance, their friendship, their kindness, their love. Thankful for them standing by me and just being the people that they are. For a moment I was able to make them smile with a small random act of kindness but that is nothing in comparison for what they have done and continue to do for me.