The cute extra chromosome (1)

My nephew has the cute chromosome, the extra X so he is XXY or commonly known as Down’s syndrome.

On the World Down’s Syndrome day 22^nd March, we wore T shirts with his picture laughing and the title: The cute chromosome. There is no doubt that he is –at least for me- the cutest boy in town. His laughter is sweet and his determination is amazing.

I remember the day he decided to stand up by himself and walk, we were alone in the house. My nephew went to the baby walker we had tried and failed to get him to use, and tried to stand up using it alone. Although I tried to help him after he fell several times, he refused my help. I sat watching him trying to stand and fall several times. Eventually he managed, looked at me and smiled. The he started pushing it to the end of the room. Hitting the door, he turned to me as if asking for help. I turned the walker around, and fell down. I helped him up and he continued pushing and walking.

We spent some time with him pushing and then me turning the walker around when he reached either side of the room. The he figured out how to turn the walker. At the end of the room, he would sit on the floor, change the direction of the walker then stand up (leaning on the walker) and start pushing and walking.

For few days afterwards, he kept playing with the walker, pushing, walking and turning by himself.  Then one day he stood up without the walker and took few steps by himself. One or two steps then he’d fall. He would then stand up alone and take few more steps. Eventually he was walking by himself.

I clearly remember when my daughter took her first few steps by herself and walked to the door as I came in from work. It was a magical moment for me. She was much, much younger when she started walking without really falling. Yet with Cute chromosome boy, we lived through each failed attempt, admiring his determination and his self motivation. Every little thing he does is magical.

We never know when he will achieve something new. We cannot compare him with “normal” children (those without an extra chromosome) and expect that by a certain age he will have reached a particular developmental milestone. Nothing to be taken for granted.

Living with my XXX boy has taught me how to appreciate much more, each thing he does is an achievement. Moreover, I’ve learnt to appreciate more in life: a nice gesture from a friend, a kind word from a stranger, the sun shining one day, a smile from a kid. Every little thing in life is worth appreciation. Thank you XXX cutest boy in town.