Some of you may know that I am the proud father of two wonderful daughters, Ella and Isabella.
Isabella turns 18 on Tuesday 21 March and just like any other family we shall be celebrating this milestone by taking her to the pub in time honoured tradition. Isabella has long fair hair, piercing blue eyes and happens to have Down’s Syndrome and autism.
Like her sister, Isabella was born at home. Her birth was routine, although tipping the scales at just over ten pounds, I’m sure my wife, Nannette, didn’t feel her arrival was anything but routine! A couple of days later, one of the midwives knocked on our front door unannounced. I was still in a state of happiness - as any new parent would be - so I didn’t think anything of it. As she walked in, she asked my wife and I to sit down.
At that moment, I could tell by her expression and tone of voice that what she was going to tell us would change the direction of our lives forever. In a calm and soothing manner, she asked us both if we had heard of Down’s Syndrome? Those two words shattered me and I felt like I had momentarily left the world. I look back at the moment with guilt and regret as I had started to grieve for the child I thought we were going to have.
I had, of course, heard of Down’s Syndrome but my knowledge of the condition was limited and filled with tropes. I knew that people with DS had learning disabilities and thought they had a limited life span. I cannot remember how long the midwife stayed but as I broke down in tears she told us both that she had arranged for us to take Isabella to the hospital so that she could be examined by the doctors.
For the rest of that day my head was filled with a maelstrom of grief but I knew in my heart that the love I had for my baby girl would get me through the darkest hours ahead. Nannette, meanwhile, was a beacon of strength for me. Bless her, she was still recovering from giving birth and looking after her mess of a husband!
At the hospital, the pediatrician asked if he could be joined by some student doctors – Down’s Syndrome occurs once in every 700 births – so I could only assume it would have been a ‘good’ experience for them. To be honest, at the moment in time I would have agreed to anything - I just wanted my baby girl to be healthy. She was prodded and probed and passed around each doctor.
Children with DS are hypotonic which means they have abnormally low muscle tone. The sight of her being held up like a doll and the paediatrician allowing her limbs to flop around whilst his students were taking notes haunts me to this day. After that, he explained that it is commonplace that babies with DS are born with heart defects. He took us to the cardiology ward where she was due to have a scan. I picked her up and held her tightly in a warm embrace and could feel her tiny beating heart on my own chest. At that point, I knew she was a fighter and had more strength than me. I looked at my wife – my tears had stopped – and I said to her, “We’ve got this!” She had a tiny hole in her heart but it was one that didn’t require an operation and, over time, it would heal.
There was no formal diagnosis that Izzy had Down’s syndrome that day as they would have to do blood tests. As fate would have it, we had to wait quite a while – over Easter weekend - for her diagnosis. During that time, I was no longer sad. I knew life would be challenging for her and for our family, but we had the love, resolve and optimism to get through it all.
On her second birthday we realised that her birthday coincided with World Down’s Syndrome Day. Down’s Syndrome is a trisomy (triplication) of the 21st chromosome. 21/3 – 21 March. So, when we celebrate her birthday we also think of all the other people with Down’s Syndrome across the world. One person told me he believes that people with Down’s Syndrome are God’s fallen angels who are on earth to bring happiness and joy to the rest of us.
From the shell I was to the person I am today, I have Isabella to thank. She has given me strength and inspires me every day. The world is not geared up for people like Isabella; while legislation such as the Equality Act protects people with disabilities to an extent, unconscious bias is a daily obstacle that we face as a family. But Isabella overcomes adversity. She is not able to speak fluently, nor able to read or write; she will not be able to live independently and will always require the attention of two people to look after her needs; but we give her the best life possible.
When she’s happy and she laughs, her smile burns love into our hearts. Our bond is unbreakable and although we have some very difficult days I would run through forests of fire for her.
I sometimes wonder what I did to deserve a child like Isabella. Whatever it was, I thank God I did it.
