He is our Rainbow of Uniqueness

Kassie Filer

On 3rd November 2017 Carlson literally flew into this world, a really quick labour with my partner and mum at my side. My partner asked my mum to do the honours of cutting his cord. It was perfect…until they handed me my son and I instantly knew something wasn’t right. I felt panic and whispered to my mum, ‘Mum has he got Down syndrome?’ I felt a sick feeling in my stomach I will never forget. My heart was broken. She said no, and I asked his dad to hold him.

I didn’t say another word to anyone but I knew. I couldn’t look at him as I so wanted to be wrong. Nobody said anything and it was like nobody saw it but me. It was 3am and I quickly sent my mum and his dad home. I just wanted to be alone and cry. I so wished I was wrong. The midwife wrote ‘looks perfect’ on his notes. Perfect? Really? Was I going mad?

They did his newborn checks and still nobody said anything. He started to struggle to maintain a safe temperature so I held him tight to me keeping him warm but I felt numb. The next morning I didn’t want to say the words ‘Down syndrome.’ I just asked them to check his ears as they didn’t look quite right. They got a senior consultant and she said ‘I think your concerns are right, he has some characteristics of Down syndrome.’

I broke down. The tears just kept falling.

Why me? How did this happen? What am I gonna do?

I felt like it was the worst thing that had ever happened to me. How could I think this about my own son, my innocent little baby? I felt so guilty, so awful. Why didn’t I just instantly fall in love like I had my other children? I rang my mum and asked her to come quickly. I was a complete wreck.

Then came the hard part of telling people. I felt I couldn’t celebrate Carlson’s arrival. I just felt sad and devastated. My other children came in to see him and they instantly loved him. It broke my heart – why couldn’t I? I was so proud of my children, how they just saw a little baby – their little brother. When I told his dad at first he was upset, shocked and worried but by the time he got back to the hospital his mind was set. This was his little boy and it made no difference. He was Carlson and he loved him unconditionally from the moment he was born.

The next week was probably the worst week of my life. I couldn’t eat, talk, I felt like I was on another planet. I was surrounded by other new mums who all looked exhausted but happy. It was torture. My sister and my mum came to my side and never left. They held me together. Without them, my other siblings, other family members and great friends I would not have got through the darkest days of my life. I even asked my mum ‘Will you love him?’ Of course she answered ‘I will love him more!’ I was so scared for him. I prayed people would be kind to him. I was just full of fear.

Over the next few days Carlson was very unwell. He was in an incubator and tube fed and all I could do was look at him and cry. He looked so helpless and I couldn’t even hold him. I felt I had already failed him and he was only days old. Next came the tests – each time we were completely ridden with worry. I prayed he was going be ok.

When I told my children about Carlson’s diagnosis a few days later it broke my heart. My step daughter cried down the phone and told me it made no difference to her brother and she loved him. Chennae held her baby brother and cried, she went off for a minute with her Nanny and came back into the hospital room and said ‘If anyone hurts or is mean to my brother I will beat them up. He is the cutest baby in the world and I love him and will protect him. Mummy don’t cry he is our rainbow of uniqueness.’ I was so proud. She really showed me what unconditional love was and in that moment I knew that my three children would share amazing love. Clayton didn’t understand – to him Carlson was just the sweetest baby brother who he couldn’t stop kissing.

Carlson’s siblings adore him and he has added so much to their lives. From him they have learnt things not taught in the classroom. They will grow in empathy, compassion, understanding and kindness and that is what the world needs more of.

My biggest regret is that I didn’t see what a blessing he was right from the start. In the four years he has been the centre of our world he has changed us all for the better. Life is never ever boring it may have some challenges but I know for sure we hit the jackpot and more when we were blessed with him as our son. He is popular at nursery, especially with the girls! He is preparing to start primary school in September. He loves dancing, music, parks, and animals. He is a model for Zebedee Talent. We want to show the world that people with Down syndrome should be valued, respected and treated as individuals. Carlson brings joy with a big helping of mischief! The midwife had not got it wrong then she wrote’ perfect ‘ in his notes after all, because Carlson is down right perfect and we wouldn’t change a thing.

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