My son was born on 24 February 2009 after 2 years of trying for a baby. My perfect and much longed for baby boy was here, he was perfect, still is and always will be! He is our second child, his clever, artistic and funny sister was born when we were just 18 years old in 2000 and we conceived her without any trouble.
Hydrocephalus My son was born with hydrocephalus and was diagnosed pretty early on. A friend and colleague of mine on seeing my son suggested that we speak with the health visitor and our GP about ‘the size of his head’. My husband had passed comment before about the size of his head, but having a ‘larger than average’ head myself, I didn’t think anything of it; he would ‘grow into it’. Or so I thought.
Well, it turns out that he didn’t grow into his large head and was diagnosed with communicating hydrocephalus after numerous tests and referrals to neurologists, paediatrics and specialists. This was such a difficult time for us, we were still grieving for the loss of my mum who had passed away in the late stages of my pregnancy, coupled with this shocker, we just weren’t ready for more life-changing news… but in true Jalloh form, we researched and spoke with people to learn what hydrocephalus actually was as it sounded pretty serious. One of the first things we came across was ninds which was very science-based and didn’t give me the reassurance I was looking for, it didn’t tell me my son was going to be OK. But it did educate me on what the condition actually was and that was useful. Something else we stumbled across was the Children’s Hospital of Wisconsin and a lot of other American based websites. The Children’s Hospital of Wisconsin was telling us that, ‘Most of the newborns born with hydrocephalus will have a normal lifespan, and approximately 40 to 50 per cent will have normal intelligence. Seizure disorders have been diagnosed in about 10 per cent of children with hydrocephalus. The mortality rate for infants is approximately 5 per cent’. It was the word ‘most’ that was the ‘MOST’ difficult word to understand and make sense of… would my son fit into this general term? Again, that was me looking for the much-needed reassurance that he was going to be OK and what if he didn’t fit into the ‘most’ group of children? what did that mean for him? for us? My head was spinning.
As we went to appointment after appointment, I realised that this was a life long condition and one that I needed to become an expert in, in order to support my son and be the best mother possible. So true to form, I asked questions, asked for more detail, asked for clarity, asked for suggestions on how I can work with and support my son.
As the year went on, I learnt more and was able to not only support and encourage my son but also defend him when I needed to. Like many other additional needs, this was invisible to people, so they were not able to show the empathy and understanding that they should. This includes friends, family and within the school setting. Some family member would say ‘oh he is OK, there is nothing wrong with him’, and they were right, there was nothing ‘wrong’ with him. Everything was right with him, he is exactly the way he supposed to be. Some people even decided not to accept the diagnosis, this was probably the hardest thing, how could you love, support and help me raise my son if you didn’t even understand him?!?
My son has taught me so much, he has taught me to be patient, to be supportive, to be understanding, to not be judgemental, to always have a kind heart to others, to see beauty in ‘unconventional normal’, to not take life too seriously and to go with the flow a little more.
What is Hydrocephalus?
Nine years later… My son acquired a brand new super power! He had developed ADHD
I think because I had 9 years to fall in love with my son and to get to know his character, the discovery of this superpower was easier to understand. Again, it was how I was made to feel by others, which was more difficult than the actual diagnosis. But there was a nagging sense of guilt; guilt that I had not seen the signs; guilt that I had not taken the steps to support him better and guilty that I did not know my son the way I thought I did. Of course, on reflection I know this is irrational, I do know my son, I do support him… Maybe it didn’t register with me because I accept him exactly how he is and concentrated on his strengths.
ADHD was never my problem. I thought of it as a gift because it gave me an ability to join dots.
“I was fine because I had a patient mother and some patient teachers,” “but it makes me furious that you get a kid who has this creative energy, who is powering off the walls and people can’t be bothered to deal with energy.
Will.i.amI hope one day my son talks about me like this
I want to leave you with a few things to think about and to ask you all to show a little compassion to one another. I know we all have a lot of important and time-bound things to get done, but please let’s be a little kinder. Be it the older lady in the supermarket who might be living with Dementia, trying to sort out her money to pay for her shopping or the boy carrying out repetitive actions in a restaurant, maybe that’s a trait related to his Autism. It might be the mum in the restaurant asking about the carb count within a meal because her 10-year-old son is learning to manage his diabetes or it could just be my son, struggling to deal with the noise of the hand dryer in the toilet or replaying a whole episode of Pokemon! out loud for us all to hear and enjoy (word for word)…
Thank you for reading this far, please visit our travelling with a child that is living his best life (oh and he has Hydrocephalus and ADHD) blog for information on how we plan for our travels, specifically how we have planned for our 23-hour flight to the other side of the world!
- How would you feel if people were constantly looking for a reason and a theory as to why you’re you?
- “What’s wrong with our society is that we want to pull everything back, stop people thinking out of the box and make everyone the same. I’ve never wanted to be the same as anyone else.” Will.i.am
Peace, Love and Happiness
The Jalloh Family