Today my little fella Harry became a published author. He came to me with a poem about his brothers, and this was published in a journal called Special by Nasen – an leading organisation in Special Needs Education. His poem ‘That is them’ led me to tears. Below is the article I wrote that was published alongside Harry’s wonderful prose. My little boy has inherited my love of the written word! My heart is bursting with pride today.
”My husband and I were blessed with our son Harry in 2004. He was an absolute joy. A content baby, a happy, chatty toddler and although we were probably biased (!) he was growing into a lovely little boy.
In 2009 we decided to have another baby. Only we didn’t go on to have one baby – we had two. Seeing identical twins on an early scan was somewhat of a surprise, but a welcome one! We had many hopes and dreams of how our family life would be. My husband and I spent many hours chatting about the future and how our twins would add to the happy family unit we already were. What bond would they have? Would they be really similar or have different personalities? We dreamt about holidays, them growing up together, all the fun we would have. One thing we were certain of though is that Harry would be the best big brother. There was so much to look forward to.
Things didn’t quite work out as we had hoped. At 29 weeks of pregnancy the twins were born prematurely and our lives were turned upside down. Life hung in the balance for my sons in the early weeks and my husband and I kept vigil at 2 little incubators, side by side, as the twins fought for life. As well as the challenges prematurity brings, Zachary had meningitis twice in the first 8 weeks of life, and Reuben had a massive bilateral brain haemorrhage. Facing the prospect of losing my twin babies so soon after their birth was overwhelming to deal with, yet then being delivered news from doctors that Reuben particularly had irreversible and catastrophic brain damage was truly agonising to comprehend. From that very moment our life changed unrecognisably, although even at that point we didn’t know how much.
After they came home after a lengthy hospital stay, that first year was all about survival. Their growth, their health, their medical equipment, all the new faces of the vast numbers of health care professionals that suddenly became part of the furniture in our life, the paperwork, the medicines, the huge number of appointments where the twins were being watched closely for signs that their development was delayed or absent. Reuben was diagnosed with Quadriplegic Cerebral Palsy (uses a wheelchair full time) and Global Developmental Delay. Zachary’s diagnosis is Ataxic Cerebral Palsy, Global developmental Delay, severe hearing impairment (wears bilateral hearing aids) and brain and spinal cord abnormalities.
It is very easy to get caught up in the whirlwind of diagnoses, of worry and fear for the future, of grief of the loss of what should have been. My husband and I had a lot to take on board emotionally, never mind practically. But, as a parent there is something engrained in you to believe in your child, to sustain hope and actually despite the bleakest and darkest of starts to life, my sons’ life stories so far are one of that – of hope. Proof that in the hardest of times you can defy the odds. My little boys who were supposed to have questionable cognition can work an iPad better than me. Reuben, the little boy who was not meant to even stand can step supported with a walker. Zachary, the little boy who I was warned may never speak says, ‘I love you Mummy’ every day. These little boys who were meant to come to nothing have been nurtured and encouraged so much that they started mainstream primary school with their big brother Harry this term.
But you cannot battle with the odds alone. I have come into contact with many professionals, both in health and education who have helped me to help my sons. In the early days, I met a particular therapist who delivered me a very strong and positive message. Zachary and Reuben were children first. Disability came second. The emphasis was on the amazing things they could do and not the things they couldn’t.
We believe in them and celebrate in their achievements, however small they may seem to people who don’t know them. It is this thinking that has not only dictated the way my husband and I approach their upbringing, but is the thinking that Harry has naturally adopted with his brothers too.
When the twins were very tiny, I not only had fear for the twins’ futures but I was worried for Harry too. I had grave concerns over the impact that the twins’ disabilities would have on Harry’s childhood. I spent so much time in and out of hospitals and clinics with his brothers – would he feel resentful towards them or me? Would he find it a struggle when I wasn’t there? Would he feel so very different to his friends? Would he feel it was a burden being a sibling to disabled brothers?
Time quickly led me to know I needn’t have worried. In fact, Harry’s tender, caring and sensitive personality with his fun loving streak should have told me straight from the start I needn’t worry. Harry has taught me more about coping with this ‘life’ with the twins more than anyone I know mainly as he loves them because of ‘who’ the twins are, not’ in spite’ of who they are. He has grown into the most incredible young man, with a heightened consciousness of sensitivity for people who may have it a bit tougher in life. The bond he has with his brothers is one to behold and I’m certain this will always be strong.
Harry has always had a ‘way with words’, from the moment he could talk and he independently takes to writing to express himself and his feelings. These may be from writing funny stories to make the twins laugh to writing poetry like the one here.
‘That is them’ was something he produced to my husband and I one evening after the twins had started school. He describes how he is ‘just proud of who they are’ and this poem reflects that. He often comments how it frustrates him how people commonly see the disability before they see the person. He is very proud of his brothers, and I could not be more proud of him and the person he has become.
Zachary and Reuben are now in full swing at the local primary school in their Reception year and are blossoming under their fabulous support they are receiving there. They are happy boys who amaze me each and every day and instead of feeling angry or bitter that this happened to them, I actually just feel very thankful that they are ours. Things are still quite unclear for their futures and whilst at times to the people around us things must seem calmer than the early days, times are still very challenging as new diagnosis, evolving medical problems and hospital stays are still common place. But, Mike and I made a very conscious decision when they were young not to feel angry that this happened, as the ‘What if’s?’ and the ‘Why me’s?’ eat you up. They consume you. Don’t get me wrong, there are days when I hate Cerebral Palsy and the difficulties it causes my sons with a passion. There are some days when the mountains we have to climb seem higher, the battles we have to fight seem that little bit harder and when I have to be their voice, my own voice doesn’t seem loud enough. But all that worry fades into insignificance when they make progress, when they reach a fresh milestone or achieve something new. I truly believe that although disability has shaped our life, it does not govern us or define us. It certainly hasn’t destroyed us. It’s been a journey to reach acceptance but we have come a long way since those dark days at diagnosis. We live now by not what could have been but the appreciation of what matters in life, with a far better perspective over the things that are truly important.
Harry, Zachary and Reuben have bigger smiles, more determination and courage in their bones than I could ever hope for and approach everything however challenging with dignity and spirit. Being different, the one thing I was scared for them to be, I now know is what makes them beautiful. I am proud of all three of my sons, all for different reasons, but am especially proud of the unconditional love they have for each other through true adversity. I know with Harry at their side – the twins are going to be just fine.”
That is Them – by Harry Smith
Think of happiness
Think of people that thrive
Think of people who love being alive
That is them.
Think of love
Think of unity
Think of children that make our community
That is them.
Think of fun
Think of toys
Think of our two wonderful boys
That is them.
So think of other people
of brothers, sisters, fathers and mothers,
And of two people that love each other
Our Zachary and Reuben.
Harry – you are my very awesome. xxxx