Two years ago, this week, our world changed forever. We were plunged into uncertainty and took our first steps into the crazy world of Hydrocephalus. Today it is two years since we attended what we thought would be a routine hospital appointment to check Charlie’s head growth, if there was one thing it wasn’t it was routine. Looking at Facebook memories around this time is hard and the post relating back to that day seems so calm considering what was unfolding, in response to someone’s question as to what was wrong, I said he had “excess fluid on his brain”. I still didn’t know the word hydrocephalus, nobody had told me. It’s very strange looking back that there was a time I didn’t know the name of the illness that has changed our lives so very much.
Two years later and things are different, very different, to how we had expected our lives to be. The thing is though different is not bad, it’s just different. Yes, there is worry, yes there is sadness but there are those things in everyone’s parenting experience. We have also seen our child achieve amazing things, from learning to roll again to mastering his walking frame, it’s been quite a journey. I have had to change, I have had to learn new things, I have had to drive his recovery. It’s tiring and emotional but it’s also rewarding. I have discovered I am stronger than I ever imagined, that I have skills I never really utilised to their full potential. I have learnt we can’t do this alone, we simply don’t have the knowledge and skills. Charlie needs much more than paediatric and neuroscience support, this illness is not just about the fluid, the ventricle sizes or even the shunt. He has an acquired brain injury, the pressure from the build up of fluid has caused this. The brain powers EVERYTHING, hurt it and it needs help to recover in the best way it can. The beauty of a child’s brain is it’s still developing, still building, still learning. Charlie lost a lot of skills he had learnt in the first few months of life and that is so sad, watching him try to relearn those skills can be heart-breaking, but he is so determined. We have found ourselves surrounded by people who help and support him in reaching his goals. It hasn’t been easy, in some cases we have been lucky and in other cases it has taken drive, persistence, google and a lot of phone calls. There was no instruction manual, we’ve had to learn on the job. I was determined to get him help and to get him help quickly. I knew it couldn’t wait, I just needed other people to agree with me. I had to challenge the established ideas that Babies could wait, that it was best to watch and wait. In the immediate period following his surgery I naively thought he would be fine; the shunt had been fitted and I thought he would just catch back up. I didn’t realise that he couldn’t catch up without a lot of help, that realisation would gradually dawn on us. We had chosen a nursery before we ever heard the word Hydrocephalus, it was a lovely place and when we visited it felt like the right fit for our baby. I was returning to work less than two months after his surgery, he would be there full time. The call I made to discuss the change in situation was terrifying, I worried what would happen if they felt Brain surgery was just too big a thing, we couldn’t afford for me to give up work and we had nobody else to care for him. I think I recall just bluntly blurting out that he was registered to start in April but he had recently had brain surgery and would that change anything, I held my breath bracing for the worst and was shocked by the calm response of the owner “ok, come in and sit with the staff. Tell them what his condition means, what they need to know and what they have to do to care for him and we’ll go from there”. It was so simple and yet it was a massive leap of faith on their part, a child with a shunt and global developmental delays is a massive responsibility but they never hesitated in saying he’s welcome here, we’ll take care of him. Whenever I think of how they accepted him without question I well up, there are no words to describe what it means to us and I genuinely think it is a very special place. Since his first visit he has loved the nursery, such an amazing place and an amazing group of people, they genuinely care. When he couldn’t move, they moved him to different areas of the room, they sat with him, they sang to him, they made sure he did not feel alone and afraid. We learnt together, I am lucky to also have some lovely friends who understand special educational needs and they offered advice and guidance on how best to support his development. The nursery could have told me I didn’t know what I was talking about, they could have felt I was overstepping but they didn’t. They moved him onto a SEND plan, they started a new tracker which both highlighted his delays but also highlighted his progress and how best to help him. They invited the professionals in, they helped us to apply for help. A lovely lady called Anna at the Rainbow Child Development Service made many referrals, she listened, she didn’t make us wait, she believed us when we said he needed help. Our first meeting with physio made me cry, at almost one he couldn’t sit independently, couldn’t roll, couldn’t crawl. The physio was so positive, she told me about neuro plasticity that although his brain was damaged it was young enough to find “new paths”. She said it was like setting off on a journey and hitting a road block, you would remap to reach your journey, and this is what his brain was capable of we just had to help him find a new route. That was the first time someone had said it could get better, given us hope and it made me cry tears of relief. It was like I’d been holding my breath and her calm certainty that things could get better made me feel like I could breathe. I had a choice, I could either allow the enormity of this to overwhelm me or I could fight. I could focus on “fixing” the damage, focus on getting him help. There have been times I’ve felt hopeless, there’s been times I’ve felt lost but the people around us have been our strength. I have cried on them at times and I have shared great moments of joy with them also. It has helped me to cope, knowing I could help him stopped me feeling so sad. I had to focus on things getting better rather than on what had gone so wrong.
The journey continues and we are constantly learning but we have achieved so much in the last two years. We know so much more and we want to share this with others. I passionately believe that the early intervention that Charlie has received has been invaluable. The nursery and their passion meant he was receiving help and support when he was still on formal support waiting lists. They opened their doors to physio’s, therapists and support services and worked so hard with Charlie. Their hard work is reflected in how far he has come. With the help of portage and other professionals we recently secured his Education and Health Care plan which was a massive relief and will help him so much in his education. He is now two and a half and he is happy, the nursery allows him to be a little boy and that makes my heart sing. When he struggles, they talk to people like the Child Brain Injury Trust and Shine and try their best to find the best ways to help him cope. Charlie is complicated, there is no instruction manual, but they make him feel safe and they let him find his way in the world. All the people involved with his recovery have been amazing and it is difficult to imagine how different things could have been. He still has difficulties and some days are harder than others, but he has come a long way. Sometimes when I think of how far he has come it is overwhelming but a lot of it came from that phone call when the nursery said they wanted him. They saved his life every bit as much as the surgeon, they gave him back his identity and his independence, they let him be a child, every day they make him smile. They are every bit as proud of him as we are and that is a special thing.
The road we travel is not simple, there are highs and lows, but we have seen such wonderful things. The pride I feel for my son and how he approaches the difficulties in his life is overwhelming. He has such drive and determination, he is inspirational in his resilience. The shunt is a dark shadow but so far, we have been lucky that we have been issue free since the day of his surgery and I pray every single day for that to continue. I used to think strength came from dealing with your problems and not needing help, I know now I was wrong. Hugh Grant said in About a Boy “every man is an island. And I stand by that. But clearly, some men are part of island chains. Below the surface of the ocean they’re actually connected”. We are an Island chain and through Charlie we have connected with some wonderful and special people and that is something to be truly grateful for.
About a Boy and Hydrocephalus 