world down syndrome day 2024: our adventure is just getting started
colt doesn’t have to deal with potential limitations just yet, nor does he have to deal with the way society perceives him and down syndrome.
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the robichauds – andrew, colt, aria and katrina – pose for a family photo on world down syndrome day 2024.
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when the on-call pediatrician came into our hospital room at 2 am, i figured it was a regular update on our son colt, who had been born by cesarean section less than three hours earlier.
it wasn’t a “regular” update.
the doctor told us that his preliminary evaluation of colt was relatively normal, but he noticed a larger gap between his first two toes, extended skin flaps on the inside of his eyes, and a single crease across his hand instead of two.
on their own, these differences don’t necessarily mean anything, but together they were a combination of markers for trisomy 21, also known as down syndrome.
the doctor walked us through each marker, told us we would learn more in the next couple of weeks as more testing could be done, congratulated us on the birth of our son, and left us to try and get some rest.
i immediately broke into tears.
the first punch in the gut was the denial that this could be happening to my family. the second punch was the anger i felt toward myself for how upset i was at the possibility of colt having down syndrome.
my wife katrina asked me if i was ok.
“no,” i said through the tears. “i feel like a monster.”
once the initial shock wore off slightly, i realized that i was more afraid than anything.
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waiting on a down syndrome diagnosis
colt was born six weeks premature, the culmination of a pregnancy that was especially hard on katrina – much more so than the pregnancy with our daughter aria, who is almost three years old.
the doctors and nurses who performed the c-section and subsequent evaluations all said colt was a clone of me. i saw the resemblance in his nose and mouth immediately. these are two features both my children got from me, and i wear it with pride.
i’m a redhead, so it wasn’t yet apparent if he was lucky enough to join the club, but his hair was white and he didn’t have eyebrows, so i was hopeful. he’s 14 months now, it’s not red yet, but i’m still hopeful.
we were at the neonatal intensive care unit at markham stouffville hospital in markham, ont. every single day for the six weeks following colt’s birth. we cuddled him, bathed him, taught him how to feed, and overanalyzed the markers until our brains hurt.
“my toes have a gap. my eyes have a little extra skin. one in 30 people are born without a second crease on their hand,” i said to myself over and over again.
we cried most days on the drive home. the uncertainty was unbearable.
in hindsight, we weren’t afraid that colt had down syndrome. i was afraid that he was starting his life with an uncontrollable disadvantage and there was nothing i could do about it.
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we read that down syndrome is often accompanied by a number of potential health issues, including heart defects, vision and/or hearing loss, and other physical impairments. colt was born with a club foot, which is not uncommon for people with down syndrome, so one physical challenge was already apparent.
we were also afraid of how the world would receive colt and how he would make a fulfilling life for himself. would he be bullied? would he have friends? would he get married? would he live on his own? what will he and won’t he be able to do?
the on-call pediatrician at the nicu called us on the drive home from the hospital one afternoon. he had the results of the blood test and wanted to give us the option to meet with him the next day or get the results over the phone.
everything had been building up to that moment, and we opted to continue the discussion over the phone. he confirmed colt’s diagnosis and said he looked forward to seeing us tomorrow.
it’s definitely cliche, but a weight was lifted. katrina and i could stop wondering about the future and actually begin to plan for it. that evening we called our families to give them the news, cried some more, and slept better than we had in a while. tomorrow was the first day of the rest of our lives.
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the beginning of our adventure with down syndrome
it’s been a little more than 12 months since colt’s diagnosis was confirmed, and our adventure is just beginning. after all, colt is still just a baby. he’s learning to eat solids, sit up on his own, crawl, and he’s got his first two teeth—just like any other baby.
we’ve had a few hospital stays due to respiratory viruses, a few runs of antibiotics, puffers for the cold and flu season, and more appointments than we can count—feed studies, occupational therapy, physical therapy, eye exams, hearing tests, etc.—but colt is colt and we couldn’t be happier.
i’m trying to take it one day at a time, whether it’s managing appointments, performing at-home exercises to aid in development, or continuing to learn more about down syndrome and educating others when i can – especially colt’s big sister.
aria is practising sign language with colt and we’ve equipped her with a variety of fun books and toys that highlight all the things that make her and colt unique and special. my biggest dream as a parent is that they continue to support each other through anything life throws at them.
katrina and i are constantly learning as well, which is a powerful antidote for fear. the better prepared we are, the more we can focus on the well-being of our children.
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colt doesn’t have to deal with potential limitations just yet, nor does he have to deal with the way society perceives him and down syndrome. all he has to do is be a baby, and he’s pretty good at that.
i don’t know what colt is and isn’t going to be able to do, or what he wants to do, for that matter. what i do know, and what i’ve learned in a short period of time from family, friends, colleagues, nurses, doctors, therapists, counsellors, and many other people who have already contributed to colt’s life, is that he is surrounded by love.
the future is still uncertain, but i’m not afraid anymore.
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