Being the dad of a child with special needs
“When my partner Jennie was pregnant with our son, it never occurred to me that he might develop cerebral palsy. It just seemed like the kind of thing that happened to other people.
Ben wasn’t born with cerebral palsy, but three days after birth he contracted an infection, probably meningitis. Having arrived 11 weeks early and without a developed immune system of his own the infection nearly killed him. He survived, but with severe brain damage. Although he wasn’t formally diagnosed with cerebral palsy until he was 17 months old, we knew from the start he would have many challenges to overcome.
Dame Vera Lynn Children’s Charity has been one of the most positive, supportive and loving places we have been as a family since the day Ben came home, five weeks before he should even have been born.
Most importantly, it has been wonderful for Ben. When he started at the school he could hardly vocalise at all, and if he did join in with songs or rhymes it was in a whisper. Now he anticipates the next activity, and shouts out as loudly as he can.
I tell him on a Thursday evening that we’re going to his special school in the morning, and he smiles the broadest smile and bunches his fists with excitement. When we arrive the next day everyone knows him by name and looks as pleased to see him as he is to see them.
He throws himself into every session. He is learning so much and becoming ever stronger, and to Ben every minute at School for Parents is playtime with his friends. His speech, his sitting, his standing – every aspect of his physical and cognitive development has benefited from attending the school.
It’s not just Ben who has gained so much from coming to School for Parents each week. I alternate classes with Ben’s mum, and Jennie has made many friends who support her, share advice and make her feel that she is not alone.
Even our daughter Leah has reason to be grateful. She is Ben’s biggest fan, and tells anyone who will listen that she has the best brother in the world. One week when the observation room was too full, she was allowed to sit in the classroom. Leah stayed still for the whole three hours, encouraging Ben and all the other children.
Other than Ben, I think Dame Vera Lynn Children’s Charity has helped me the most. Being Ben’s dad is the best and the hardest thing in my life. Something I thought happened to other people has happened to us, and after more than three years I still find it hard to cope with.
But on Friday mornings at Dame Vera Children’s Charity I feel happy and proud.”
The day our life changed
It all started on the first day of spring back in 2011. That was the day that our rare and precious gem, Grace Evelyn, was born. She was born in Baltimore, Maryland in America and gave us immediate joy as we became a family of three and first time parents. It was on day three of her life that we discovered how much our lives were about to change…
Grace was born with a very rare genetic condition called Cardio-Facio-Cutaneous Syndrome or CFC Syndrome. There are less than 400 cases registered across the world. CFC syndrome typically affects the heart (cardio-), facial features (facio-) and skin (cutaneous). This genetic mutation means that Grace has severe cognitive delay and trouble with gross and fine motor skills. She is unable to stand or walk and she has no form of communication. She isn’t able to eat any solid food and is bottle-fed a high calorie formula. She has severe defensive behaviour and sensitivity in her arms and hands thus she does not like her upper limbs to be touched or held and does not like to touch or hold anything.
We had no warning that our baby girl was going to be so different from the daughter we dreamed about all through the pregnancy. We were sent home from the hospital but soon found ourselves bouncing between many different hospitals and specialists. Grace was admitted to hospital for “failure to thrive” as she refused to eat and was a very tiny baby and losing weight quickly. This is when we first heard of CFC Syndrome, which prompted an immediate Google search. There was no way our baby has that….
During all of this, we also discovered there was a needed work move that was going to take us overseas. So in our first six months of parenthood, we were coming to terms with our beautiful baby girl who had needs we couldn’t even begin to imagine as well as organising an international move and saying goodbye to the life and home we had built over the last ten years.
Fast forward to the three years we have been in the UK. Grace is not only our precious gem but also our shining star!
When Grace started with Dame Vera Lynn Children’s Charity, she could not sit unsupported, refused to touch anything, and could not tolerate loud noises of any kind. Today, Grace is sitting on her own, bottom shuffling, spinning around and reaching to carefully explore the world around her. This is all because of the amazing work that is done at Dame Vera Lynn Children’s Charity and their dedicated team.
Dame Vera Lynn Children’s Charity has not only taught Grace how to accomplish these wonderful milestones but they also taught us the most important lesson of all—how to play with our daughter! We can’t begin to tell you how difficult it is when all you want to do is hold your daughter’s hand and enjoy those precious early years together and you just don’t know how to do it.
We are so grateful to Dame Vera Lynn Children’s Charity for everything they have done for our family. They have taught us how to be the family we want to be and have been our saving grace in raising such a beautiful and extraordinary little girl.
The Mortimer Family