What makes Luke different? I ask myself this many times a day. This question is made more difficult due to the fact that Luke is my first child and as a result I don’t have much to compare him to. But what makes it even more difficult is the fact that I don’t really care.
The answer however is not very much and it is more about what makes him special.
Luke was born with Trisomy 21. We all have 46 chromosomes. Luke is special in that he has an extra copy of chromosome 21. An extra copy of chromosome 21 is present in every tiny cell in his body.
So what exactly does this mean? Google provides a myriad of scary answers, heart abnormalities, hearing loss, poor muscle tone and delayed physical and intellectual development to name but a few.
Our biggest concern when we received Luke’s diagnosis was that he may be born with a heart condition. The thought of our little babe having to go through heart surgery filled us with dread. Thankfully heart scans were done after his birth and our fears were allayed when the results came back clear.
With our main worry out of the way I find myself wasting hours throughout the day staring at Luke. Looking at each body part in awe. The other day I found myself with tears streaming down my cheeks wondering how on earth we had created something so perfect.
I love the fact that he has a single solid line that runs across his left palm, whilst mine is full of broken haphazard lines. There is something special about the line being so perfectly straight and solid. This single transverse palmar crease is evident in around 50% of children born with Down Syndrome.
I love how his little pinky fingers rest so sweetly on top of his ring fingers. They are similar to my own crooked pinky fingers. I find myself kissing his tiny little fingers each and every day for I know that he will use his hands wisely, confidently and always with love. The feeling of him gripping my own fingers with his shows me that he strong.
His “sandal gap” toes are in stark contrast to my square fat feet. We often joke that he will be the perfect poster child for Haviana’s.
I find myself clapping with delight when I see our baby massage and strengthening exercises paying off when he lifts his head high, when he kicks in the bath and when he grips onto his bottle. I fail to see his poor muscle tone when he is SO strong and the pride I feel is overwhelming.
I stare into his beautiful navy blue eyes and fail to see his upward slanting almond eyes or his slightly flattened little nose. To me he is a normal looking little boy. To me he is the most beautiful little boy that I have ever laid eyes on. I am so proud that he is mine.
In terms of his physical and intellectual development, at this stage we really don’t know what is to come. But isn’t this the same for all parents? Who knows how our children will develop both physically and mentally, all that we can hope for is that with our efforts, love and guidance they will become the very best at what they can be.
A fellow mum with a child born with Down Syndrome gave me the best advice I have ever received. She said to take every milestone and chuck it out of the window. She said to just enjoy this time and not to fixate on what your child is or isn’t doing, because otherwise you will miss out on all of the really important things.
Luke will meet his milestones. It may just take a little bit more time and besides who wouldn’t want their children to be babies just for that little while longer?
We have been blessed with a healthy, happy and physically strong baby boy with the most beautiful blue eyes and the gentlest nature. His slight differences merely add to his perfection.
Luke has taught me the most valuable lesson on this journey so far. He has taught me to embrace differences. He has taught me that something imperfect can be more perfect that you could ever imagine. He has taught me to embrace any variance with awe and wonder and to be eternally grateful for health, happiness and love.