I think recent events have been so unexpected and strange it’s taken a while to actually understand what has happened and how it has affected us. I’m pretty sure a pandemic of such proportions,that has effectively shut down large sections of the world, was the last thing the average person on the street saw coming. It all seemed to escalate very rapidly, one minute coronavirus was a meme on Facebook and the next minute we were effectively prisoners in our homes. Everything we knew, our way of life was taken from us with not even time to adjust to the situation. To say it’s been surreal would be understating the situation. To try and navigate this unbelievable situation with a two year old is hard, they don’t call it the terrible twos for no reason. To try and navigate it with a child with an acquired brain injury is exhausting. It’s difficult, if not impossible, to explain to people what it means to have a toddler who is dealing with the “extra” that an acquired brain injury brings. There is a lot to consider, he has certain behaviours that are exacerbated in times of stress. He is a complicated little package, he has some behaviours which would be considered autistic traits but he is not thought to be autistic, it is a result of the pressure in the brain and the resulting damage. He thrives on routine and can be heavily emotionally distressed when this is removed, the removal of nursery and everything he has known since nine months old was very hard for him. Add into the mix that Charlie has never had to compete for attention in his life due to the fact that his condition demands constant supervision and two parents trying to work from home in very busy jobs has been hard. We work in very reactive roles and we have been unable to create any kind of formal timetable and that that has been intolerable for him. The day when he sobbed inconsolably because Daddy’s phone rang really broke my heart. I am sure so many parents would agree trying to wear both your professional and parent hats at the same time is impossible and the guilt levels that grow from not being able to work miracles is gut wrenching. I have felt guilt that there are times I have left Disney + to parent my child but equally we have to work to provide for him and you just can’t win. I have been terrified of the lasting damage being at home, without the level of activity he is surrounded by at nursery, will do to his recovery and long term outlook. I have been in tears at the thought that professionals have stated he needs 100% 1-1 supervision in any setting and as a parent I was not fulfilling these needs. I have felt like I was failing, I have sat and cried numerous times feeling like I was not doing enough. I do like to have an element of control over things, it’s how I cope. I am a problem solver, I make plans. Lockdown does not allow for planning and that has been hard. The longer the lockdown continued the harder I felt it, there was no plan, no light at the end of the tunnel at times. I think it made us realise just how much we value nursery and the support that brings. Taking him out of nursery has been one of the hardest parts of this, he has delayed social skills and taking him away from other children could really impact on his ability to develop these skills, he is a very sociable little boy and he cannot understand that he cannot approach other children when out on his walks. We got progressively more tired, frustrated and emotional. I felt absolutely drained at one point and there was absolutely nothing we could do to make things any better for any of us and that realisation can feel soul destroying. I have felt panic, I have felt trapped, I’ve screamed “I can’t do this” while realising I have no other option. I know it has been a struggle for everyone, it’s a truly appalling situation that nobody had a plan to deal with. I am always mindful that I don’t want to paint a picture of us having things so much harder than others as I know in some ways we are lucky and we try to cling to that. The thing is there are difficulties that we cannot get people to understand, I think he looks so “normal” that it can be hard to understand all the things that we have to deal with. He suffers severe leg cramps where his legs lock and twist, he gets very hot and sometimes needs holding for hours at a time as he presses his head to yours. His lack of communication skills mean that he can’t understand us and equally he has no way to explain to us what he is feeling, not even the basics of expressing his needs and desires. We have to try and anticipate and guess what he needs. We try as hard as we can to read him and his “communication” we pray it’s enough.
We have been through lockdown birthdays, Charlie’s was hard as he normally spends it with the friends he’s had for most of his life. Strangely that lack of an update photo of them together was quite poignant. Luckily he managed a party in grandma and grandads garden in between the ebb and flow of lockdowns and restrictions. We have crammed a lot into the brief periods of relative freedom. We have been to the zoo, aquariums, owl parks, theme parks and his first circus. Some of these trips are therapy in themselves, he has to learn to be around busy crowds again. He has to deal with the sensory overload that brings and somewhere in the middle we need to maintain social distance, which he does not understand. He went back to nursery in June and that helped to anchor him again. He had his people back and the way they planned for his return was amazing. He feels calm at nursery and his happiness at being back was clear.
We’ve had three holidays cancelled, he likely won’t see Santa this year and as small as that seems in the grand scheme of things it means a lot. He has to have these experiences to learn how to process and deal with them, it’s all part of the process. So as we near the end of another lockdown and the start of new restrictions we do what we can to shelter him from the storm. We are trying to make things special for him, differently special but still special. Hopefully we will come through the other side sigh and say “it was horrible but we made it through”. He is the light at the end of our tunnel and we will follow his light to the end of the earth.
About a Boy and Hydrocephalus 