So today is World Down Syndrome Day, and I thought I’d do a little post on what Down Syndrome means to me. I know that the meaning has changed for me even in the past few months, and I think as Thatcher grows, the meaning will continue to evolve for me, but this is the meaning in the here and now.
First, I’ll start off with a brief introduction of what Down Syndrome is, in case you don’t know. I’m going to put it totally in layman’s terms here. Basically, when a baby is conceived, the egg and sperm meet, and each has twenty-three chromosomes. They come together to make a zygote that has 46 chromosomes. Occasionally, the chromosomes don’t divide properly and you end up with an egg or a sperm that has an extra copy of the 21st chromosome. When conception happens with one of these, the resulting zygote now has three copies of the 21st chromosome, for a total of 47 chromosomes instead of the typical 46. This little zygote has what you call trisomy 21 (three copies of 21), or Down Syndrome. There are other ways that Down Syndrome can happen, including a chunk of extra 21st chromosome stuck to mom’s or dad’s genetic makeup, but in Thatcher’s case, he has trisomy 21. A total fluke chromosome that changed our lives.
So, what does this mean? It means that the resulting baby with trisomy 21 has a higher chance of health issues like heart defects, sleep apnea, low muscle tone, umbilical hernia, leukaemia, thyroid issues, and intellectual disability. It means that because of their low muscle tone, they will probably take longer to reach milestones like sitting, crawling, and walking. It means that they might grow slower, gain weight at a less rapid pace, and be smaller as adults. It means that they generally will have a lower IQ than typical people. So basically, it means they have a lot of strikes against them.
I have met a lot of parents of children with Down Syndrome that will tell you how happy they are that their child was born with DS. They say they can’t imagine having a child without it. They are glad their child has an extra chromosome. I can’t say that I will go that far. I love Thatcher exactly how he is, but if I could take away that extra chromosome and still have exactly the same funny, handsome, smart boy that I know and love, I absolutely would. I would love to take away the heart defect he was born with, the sleep apnea that I am pretty sure he has, or the probability that he will need extra help in school. I’d love to not have to worry about seeing our occupational therapist every few weeks (although we love her!), or having bloodwork done to check Thatcher’s white cells and thyroid function. I’d love to never have him do a sleep study, to not have to have his eyes checked so often, to never go back to the cardiologist. So, if I could keep him just as he is, but not worry about all those things, then I absolutely would.
But, in a way, I am thankful for Thatcher’s extra chromosome. It might mean more therapies and doctor’s appointments and challenges, but it brings with it some wonderful things.
First and foremost, Thatcher is Thatcher. And Thatcher has 47 chromosomes, three of them being the 21st. He is exactly who he is, and who he is supposed to be. Again, I don’t buy into all that God stuff, but I think we are here for a reason and I think that Thatcher is Thatcher for a reason. Yes, I would love to take away all the things that come with his extra chromosomes, all the worries and fears and scary things that come with it. But I would never change him. He is who he is. He is not just Down Syndrome, but he IS a child who has Down Syndrome. And I wouldn’t change him for the world. He is the brightest, funniest boy who makes my world turn. He is my reason for getting up in the morning (or at the butt crack of dawn!), he is in every smile. He is my whole world, exactly how he is. He is what I am most thankful for.
Next, I am glad for the Down Syndrome community. I have met so many wonderful people, through our local Down Syndrome association and through online support groups. We also had the wonderful experience of meeting Tara and Pip from Happy Soul Project. I think she said it best in one of her older blog posts, being a parent of a child with Down Syndrome is sort of like being in a special sorority. It’s a family of people who support each other and accept each other. It’s really quite phenomenal how open and welcoming I have found people to be, how they share in your ups and downs; despite never having met you, they help you celebrate your child’s accomplishments and support you on your darkest days. I couldn’t be more thankful for these wonderful parents (and sometimes grandparents/siblings/etc) who have been such a phenomenal support.
I’m also thankful for the strength that Thatcher has brought out in me. In college, I used to make my mum call the phone company or the car dealership or whatever it was, to make a complaint for me. Thatcher has brought out my inner mama bear. By advocating for him, I am learning to advocate for myself. He has also taught me to be strong in other ways. I used to be a quitter. Seriously. I didn’t follow through on a lot. But this whole parenting thing is teaching me to stick with things. It’s teaching me that sometimes, the best things take work (like sleep training! Good lord!). I think this is definitely applicable in other aspects of my life, and I’m hoping it’s going to help me with Weight Watchers : p
Another thing to be thankful for is how Thatcher has changed my perspective on people with disabilities. One of the mottos of the Canadian Down Syndrome Society is “See The Ability.” I think that before Thatcher was born, I didn’t realize the amazing things that people with disabilities, and especially people with Down Syndrome, could do. When he was born, I only saw the negatives, the tests and doctors and special help he would need. But people with Down Syndrome do amazing things! They go to university, they have jobs, they get married. They do all the things we would hope for our children. I actually read today about a young man with Down Syndrome who is a student at the University of Alberta and a member of Lambda Chi Alpha, my husband’s fraternity. I thought, “Uh oh! We are going to have a frat boy on our hands in 18 years!” We are going to have a frat boy. A university graduate. A young man who has hopes and dreams, and reaches them. And if you still don’t see it, keep following us. I have no doubt that Thatcher is going to blow any preconceived notions of what a “disability” is out of the water.
So, today, on World Down Syndrome Day, I am thankful. I am thankful for all the lessons that Thatcher has taught me, and all the lessons I have yet to learn. I couldn’t ask for a more perfect reason to celebrate today ❤