When you try something new, there can be hesitation. Like riding a bike. It’s exciting, but when your dad lets go and you likely will fall. You get up and try again. The reward of independently riding is worth the risk.
Some days give me that feeling of riding a bike, like, I got this. Other days, I am learning something new. And sometimes I feel like we are on autopilot and out of nowhere, I have to grab the handlebars again. Hear this part loudly: This applies to every child. Period.
Children with Down syndrome have a third copy of the 21st chromosome. There are three types of Down syndrome. People often can’t tell the difference between each type without looking at the chromosomes because the physical features and behaviors are similar. Below are definitions provided by the CDC website for “Facts About Down Syndrome”.
- Trisomy 21: About 95% of people with Down syndrome have Trisomy 21. With this type of Down syndrome, every cell in the body contains 3 individual copies of the 21st chromosome instead of the typical 2 copies.
- Translocation Down syndrome: This type accounts for a tiny percentage of people with Down syndrome (about 3%). This happens when an extra part or a whole extra 21st chromosome is present, but it is joined or “trans-located” to a different chromosome rather than being a separate 21st chromosome.
- Mosaic Down syndrome: This type affects about 2% of the people with Down syndrome. Mosaic means a varying pattern. For children with mosaic Down syndrome, some of their cells have 3 copies of the 21st chromosome, but other cells have the typical two copies of 21st chromosome. Children born with mosaic Down syndrome may have the same features as other children with Down syndrome. However, they could have fewer features of the condition due to the presence of some (or many) cells with a typical number of chromosomes (CDC,2023).
I was recently asked (again) if you can have levels of Down syndrome. The answer is no. You either have an extra copy of the 21st chromosome or you do not. You can have a different type, but that would be determined in genetics testing and not based on a feeling. Hudson was tested and fell under the 95% of those born with Down syndrome, Basic Trisomy 21. The third copy of the 21st chromosome was present in every cell of his body.
It is hard not to compare your child to other children, but I truly advise you to not do this. As a beautiful community that prides ourselves on kindness, to think your child is exceeding compared to other children with Down syndrome is the opposite of the message that we work so hard to share. Our children are on individual journeys, each child is perfectly made, and the time it takes them to move their bar is an individual goal determined on an individual basis.
I often feel as if we don’t fit in with our community of children with Down syndrome because of Hudson’s dual diagnosis with Autism. And we don’t fit in with those who alone have Autism, either. However, Hudson is perfect. He accomplishes many goals made and he’s on a path that we call “Hudson-time”. If I spent time comparing, this journey might get heavy. He can’t do what his peers are doing today, but that doesn't mean he won’t. I actually believe he will do big things. While Hudson isn’t riding a two-wheeled bike yet, he does stumble and he gets back up and tries again. We expect this from him. The independence he gains daily is worth the risk.
What is Down syndrome to me? I know my son has an extra chromosome. I am sure you can see it, too. Down syndrome is a diagnosis that I wish I had been praying for; that someone would show us a life full of new beautiful firsts by just changing our lenses. If you have known someone with Down syndrome, you know what I mean. Down syndrome is love. I do wish Hudson didn’t need so many doctor appointments, surgeries or need to live in a bubble to keep him safe; but his resilience has shown me so much about him AND so much about me. We are blessed. We are strong. We are love.
Hudson’s light and his laughter are so charming. They’re contagious. They’re infectious. Hudson gets to take the time he needs to live the life he wants. I am happy to be on this journey with him. Risks can come with benefits and some risks are worth taking. Don’t compare our children to typical children and certainly don’t compare our children to one another. All children are charming individuals, but it’s undeniable that children with Down syndrome are EXTRA charming.
References
CDC, 2023, “Facts About Down Syndrome.”
https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
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