My Boy, Bertie
(written by Hannah - Bertie's Mum)
Those eyes. Those eyes draw me in. Their beautiful almond shape and their deep, blue calm and certainty.
It was those eyes that led your Mummy and Daddy to ask each other, almost at the same moment, “Do you think he could have Down’s Syndrome?”
Let me go back though, to before you were even a twinkle in our eyes. I watched the brilliant documentary by Sally Phillips and read articles on Facebook by a Mum with a beautiful little girl who was born with Down’s Syndrome. Something registered in my mind, an idea, maybe. But with this idea there came no fear. I was being prepared and I felt ready and calm.
Next, a lovely pregnancy with no real complications. No screening, just as with our other 3 children. Happiness, excitement and all the preparations for a new baby. The only difference was a hospital delivery by C section. I felt calm, in safe hands. You were born, screaming, tiny and perfect.
You were so small, just 4lbs12oz. You were tired but together we started to find our way. With help you breastfed beautifully. I was so relieved you were here.
Then, when your Daddy came to visit us, we both had time together for the first time since you arrived. Time to share our thoughts. What should we do? Who should we tell? We didn’t want the nurses to think we were upset or disappointed. We were happy. You were still our perfect baby. Doctors arrived. They weren’t sure what to say. A blood test was needed.
We went home and on day 10 I received a call. I was in the middle of talking to my midwife. Telling her I knew you had Down’s Syndrome. I’d be disappointed if the test came back negative. The call said it was positive. What now? Well, quite a full diary with checks and appointments but all to keep you safe and monitor your well-being.
Three and a half years on, there are less-frequent appointments. You are doing so well. We couldn’t be prouder of how hard you work at everything, because you must work hard as everything is that little bit harder for you. The love I feel for you swells up inside of me so I feel like I could burst.
We have a deep admiration for your achievements, seeing how much extra you have to give to everything.
Those eyes. They take everything in. You are so busy observing the world around you and I love how much you see. You have a really close bond with your siblings. You watch them, copy them and seek comfort with them. Your desire to be at the centre of everything – fun, trouble and mischief alike!
You complete our family perfectly.
This year has seen you taking your first steps and progressing to now walking everywhere instead of crawling. Your communication amazes me. Still largely non-verbal but you almost always get your message across. I see determination in those eyes and I see the world unraveling at your feet. You will need that determination, there will be hurdles but we will climb over them…together…as a family.
The world is changing and along with it your future is becoming dazzlingly bright, just like your eyes. Not a day goes by where we aren’t thankful for our beautiful blessing, Bertie – all your 23 sets of Chromosomes of you, and particularly that extra 21st one
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Photography by Magdalena Sztechman