We were 28 when we found out we were pregnant with our first child. Married for just 5 months, and living and working in Dubai, things were fantastic! We worried our way through the pregnancy and had more scans than anyone else we knew – including a 3D one in which we saw our perfect looking baby boy. After complications with premature labour, eventually we were allowed to fly home to have our baby. As Freddie was placed in my arms I said ‘Do you think he has Down’s syndrome?’ One midwife said no he was gorgeous, while her older, more experienced colleague went quiet. At that moment I heard my world crash down around my ears. Although it was around 6 days until we had the confirmation blood test, we knew that our gorgeous boy had Down’s syndrome.
I remember one of my first worries as I was sat nursing him being that nobody would want to marry him! It seems strange looking back – but to know I knew nothing is unusual to think at this point; the whole spectrum of emotions you can go through is fairly normal for any parent in a similar situation. We were lucky enough to fall in love with Freddie immediately and we made it our mission to be Down’s syndrome advocates and found out all there was to know! Within a fortnight, we had met two families with children with DS of different ages, and though there was still a deep feeling of grief for what might have been, the future looked brighter. We took our bundle to Dubai and enjoyed celebrating our newborn. Friends and family’s acceptance at this stage is essential. My advice to anyone in this position is to surround yourself with the most positive friends and family members who will accept you and help you build the life you have been given. I’m not going to lie and say I wasn’t conscious of people peeking in the buggy at the newborn baby - often dreading their reaction - but nobody was unkind and everyone we knew welcomed Freddie with love and open arms.
We had a terrible knock at 5 months when he began having horrific seizures and lost all the amazing development we had worked so hard to achieve. An urgent trip home from the sun to see a private consultant here in the UK confirmed our worst fears: Freddie had infantile spasms. He then went on to develop pneumonia whilst waiting for his hormone treatment to start. We were close to losing him for a short time in Bradford Royal Infirmary but luckily the amazing NHS staff worked their magic. He recovered from that and got the best ACTH treatment for his seizures during a two week stay in Leicester hospital. Sure enough, his seizures began to wane and eventually stop and by his first birthday, we were settled in a new home here in Northamptonshire with a baby boy starting to slowly regain his milestones.
Since then, it really has been a bit of a roller coaster. Choosing the right nursery, then mainstream school, moving to a specialist unit to finish primary then trying to find the right secondary place. Along the way, we’ve had several hospital stays, a diagnosis of coeliac disease, bilateral hearing loss, a diagnosis of autism, various operations for hearing along with the usual childhood illnesses.
Freddie is an absolute inspiration to everyone who meets him. He is virtually non-verbal but communicates with pictures and signs and has absolutely no ego. He’s endearing and loving and can be very affectionate. His siblings are ultra-protective of him and are now able to help out with bits of his care as he still needs help with everyday things. They both include Freddie in their long term life plans which melts my heart!
Freddie is an amazing swimmer and can often be found doing up to 30 lengths of our local pool with his teacher, Philippa. He is doing really well now in his second year at secondary school and we have an brilliant set up and team around us to help us manage with the extra demand of meeting Freddie’s needs. This includes respite sessions and two sessional workers in addition to our family.
Freddie isn’t exactly what we would have chosen as 28 year old parents-to-be, but having him as part of our family gives us an enriched life experience that makes us all better, more mindful, accepting and content people. We don’t look too far in to the future but look forward to him having a home with us for all of our lives.
Thank you for being you Freddie Lee Rees. We love you with every fibre of our being.