Henry

Last year a very good friend of mine gave birth to her first and much wanted child. She had had a couple of shaky moments in her pregnancy when scans had revealed that the babies heart was a little abnormal in rhythm and she had to be monitored. She looked amazing, all tidy neat bump and happy face. The baby arrived five weeks early; despite all the scans she had kept the sex a secret so when her son was placed on her, her and Daddy had the exciting joy of revealing to everyone the sex and name of their baby. I was sent a lovely picture a few hours after his birth. He was perfect, his name was Henry. Because he was born early, I assumed she would be in hospital a little longer and was not concerned by the lack of contact. Then one day she posted a message on Facebook, introducing him as her special little boy, who had a few complications. I tried calling her, there was no answer. I got a call from her mobile and answered "Congratulations Mummy!"..."Erm, actually it's Aunty". It was her sister calling. My friend was in the hospital room with little Henry and couldn't leave. So her sister had called me back on her behalf to tell me that Henry had been diagnosed as having Down's syndrome almost immediately after birth. Diagnosed seems a funny word because it isn't an illness.

My reaction was one of concern for any immediate health complications, especially as his heart had been a problem in the womb. I was told that he had a problem with his bowel that meant he was unable to go for a poo and that was why he was staying in hospital a little longer. I later learnt that he had Hirschsprungs disease, which is a common problem in children with Down's syndrome. It means that a part of the colon is infected and therefore all waste gets blocked as the diseased part cannot do it's job and push it out. This meant little Henry was looking at surgery. Such an invasive procedure is always a worry, but especially with someone so tiny. However, I felt very confident that Henry would get through this complication. I had no real reaction to the news that he had Down's syndrome, other than to worry about how my friend and her husband were feeling. Although I instinctively knew that Henry had two awesome parents who would love him and take care of him, the news would be a shock and a source of worry as they learnt what it might mean. I wasn't shocked. When she had mentioned his heart to me during her pregnancy, I had a little thought in my head about Down's syndrome. I am not sure why, both her and her husband are young and healthy so there was no obvious reason for it to spring to mind. But Henry is not the first child I have known with Down's syndrome.

When I was twelve, a family I babysat for had a little boy with Down's syndrome. Like Henry's parents, Matthew's parents had not been aware before he was born. Like Henry's parents, it wouldn't have made any difference if they had, except that they would have been 'prepared'. But prepared for what? The thing about babies with Down's syndrome is that, much like babies without Down's syndrome, you don't know what you've got until they develop. Does your baby have a happy temperament, a grumpy one, a needy one...etc. Is your baby lazy, like my brother who took a ridiculous time to walk, or speedy, like me who walked at 11 months and looked bloody ridiculous. Another friend of mine has two boys. Boy number one is stupidly advanced. I know, everybody thinks that about their child, but he was crazy clever and quick. Then his little brother came along and his Mum thought he was never going to learn to speak. But learn to speak he did, just unlike his brother, he took his time. So yes, maybe if they had known when they were pregnant they could have processed some of the emotions before the babies were born. However, I can tell you, it wouldn't have made much difference. When a baby is born, there are emotions. You don't know what they are going to be before hand and you have no chance of controlling them or even preparing for them. Post natal depression is the most obvious example of how you cannot prepare for post baby emotions.  

What I learnt through Matthew, was that he was like every other child, he just had a few health issues and his speech took longer to develop. His speech is still the most noticeable thing about him, he speaks very softly and his diction is not as pronounced as mine. But you know what, you spend enough time with him and you learn how to understand him. And if you don't, you can ask him, he will patiently explain, over and over until you understand. Matthew, was very poorly for the first two years of his life, not because of his Down's syndrome, he had a few other health issues. He spent a lot of time in and out of hospital. Like most babies, he hated being in hospital. It was boring and lonely and I imagine, scary. He wasn't that 'happy and smiley' child people associate with Down's syndrome. In fact I would visit him during my lunch break at school and he would refuse to look at me for the whole 40 mins I was there. As soon as he was home, he would go back to himself and be delighted to see me whenever I popped round. 

So when Henry came along, all that mattered to me was that any health complication would be dealt with and that Mummy and Daddy were able to feel free to express whatever emotions they felt. When I met Henry, he was five or six weeks old. I turned up on the day that his Mum had met with a lady from her local charity group, an awesome organisation called 21 & Co http://www.21andco.org.uk/ Please go and look at what they do and if you can, donate. This Mum also had a little boy with Down's syndrome but he had the added complication of also having Autism. The visit had left my friend feeling very emotional, just with worry of what Henry's extra chromosome would mean to his life. I gave her a cuddle and she had a cry and every time either of us looked at Henry, who was happily giving me a cuddle, we would smile. It was impossible not to. No matter how worried his Mum was about what kind of life he might go on to have, here in front of us was this absolutely gorgeous little boy that didn't have a care in the World. He was just a baby, doing what babies do. Minus the pooing, he was having colonic irrigation for that. I am happy to say that Henry had his operation two weeks later and can now poo like the best of us.

So far, apart from his major operation early on, Henry has had no further health complications and he is developing at his own pace. He has a personality unique to him, just like everybody else. The best part about Henry is what he has taught his Mummy. Henry's mummy was the most impatient person you could ever meet. Henry has taught her patience. A feat that no one on this planet would have managed and I can tell you that everyone that knows her, is grateful to him for that! I am sure any child she had would have taught her patience but the main thing is that, when Henry was born, he came with a special set of worries. What he's taught all of us, is that, just like everyone else, worrying is useless, he will be who he is day by day, just like everyone else. He will experience good times and bad times, just like everyone else. He will love and hate and get angry and happy and sad, just like everyone else. I can't tell you what kind of life Henry will have, the same way I can't tell you what kind of life any of the children I know will have. Just like I don't know what kind of life I am going to have, how long or short it may be, what career goals I will achieve, if I will find love, where I will live. I don't know. So, just like everyone else, Henry and his life and the achievements in it, will reveal themselves as he lives. All we can do is remember that Henry is no different to us. Sure, he has beautiful almond shaped eyes and his movement is more laboured, but that's it. But maybe what we can take from Henry and Matthew is a reminder that we don't have to all have the same amount of chromosomes, or eye shape, or skin colour, or height, or weight, it's the differences in everyone that makes us all wonderful.