If you’ve been watching our daily one minute videos about our son who was born with Down syndrome you may have thought to yourself:
“Do these people do anything other than take their son to physical and occupational therapy appointments!?”
If so, I don’t blame you. We post a lot of videos of Noah’s various physical therapy, occupational therapy, and even a few of his speech / feeding therapy sessions. Our daily one minute videos only show one minute of our day; there are 1,339 more minutes of our day that you don’t get to see. We typically post a video every day and if Noah happened to go to one of his therapy appointments on the day of that video, that’s usually what we show on that day’s video. Make sense? But to answer your question, yes, we do have a life outside of therapy….I promise.
Why so many therapy videos? Heck, wya so many videos, period?
One of the reasons we started this website was to give the world an inside look at what life was like for parents raising a child born with that extra 21 chromosome. (For those of you that have no idea what I just said, children with Down syndrome are born with a 3rd copy of their 21st chromosome, as opposed to 2.)
Initially there were two groups of people I really wanted to reach with this website.
Group One: I just got a prenatal diagnosis of Down syndrome….now what!?
So many parents who receive a prenatal diagnosis of Down syndrome are led to believe that their life is going to be sad, or exceptionally difficult if they choose to bring their child with Down syndrome to full term. (Parenting is difficult in general. Having a child with Down syndrome doesn’t necessarily make it more difficult, per se.)
Many of these parents spend countless hours online researching information about down syndrome pregnancy, down syndrome cures, down syndrome causes, down syndrome resources, and all the rest. They are scared. Nervous. Anxious. Confused. But most of all they are hungry to know what it means to have a child with Down syndrome. Hungry to find out what their life will be like if they choose to bring their child to full term? Hungry to find out how different their life will be as a result of their new baby…who just happens to have Down syndrome. In other words; they are hungry to learn what a down syndrome diagnosis means.
My hope was (and still is) that as those moms and dads are desperately searching the internet for information, they would come across this website and see Noah. See our videos. See a sneak peek into the life of one family raising one child with Down syndrome. And that they would see that our story isn’t a sad one. In fact, it’s quite the opposite. (Then I hope they visit our Facebook page and meet thousands of incredible parents doing an awesome job raising a child with Down syndrome!)
Group Two: “Surprise! I have more chromosomes than you.” – Noah
The second group of people are those parents who (like me) were surprised to learn that their child was born with Down syndrome. When Noah was born I remember spending countless hours in our cold hospital room with my trusty MacBook Air trying to find some videos about Down syndrome. I remember going to YouTube, typing in ‘Down syndrome videos’ or “videos about Down syndrome” (I don’t recommend doing this by the way) and hoping to find 20 bazillion encouraging videos about Down syndrome.
Boy was I wrong.
Sure, there were some. But there were also lots of not-so-encouraging ones. Comedians making hurtful jokes. Super-outdated videos. Super-sappy videos. Super-long videos (I don’t want to watch 10 minutes of anyone’s home video…Down syndrome, or no Down syndrome.) Super-weird videos (If you ever worry that you and your family are weird, just spend a few minutes on YouTube. You’ll quickly find out that you are not nearly as weird as you think you are. Trust me.)
In other words it was hard for me to see the tree in light of the forest. The needle in the haystack. The polar bear in the snow storm. Waldo on the beach…Waldo on a ski slope….Waldo at a sports stadium…Waldo at the…..I think you get the idea.
Sure, there were lots of great blogs about Down syndrome, but I’m a visual person. I wanted to watch (not read). I wanted videos. I wanted a window into the life of a family raising a child with Down syndrome.
The Power Of Story
To make a long story short, a few months after bringing Noah home from the hospital I came across a video that encouraged me greatly. After watching that one short video I wanted more. A lot more. But once again I had a difficult time finding them. However, watching that one video reminded me of something very important; the power of story.
So I decided to tell ours.
I decided I would create for others what I had a hard time finding for myself. Videos. Lots and lots of videos. In fact I would do a video every day (or at least try to.) I would create an online narrative of our son’s life. I would tell his story by posting a daily one minute video of what life is like for a family raising a child born with Down syndrome.
My hope was (and still is) to reach the two groups of people mentioned above; parents receiving a prenatal diagnosis of Down syndrome, and parents surprised by a Down syndrome diagnosis after birth. To show them that life goes on. That the rush of emotions fades. That stereotypes are whack. (To new parents: sorry to disappoint you, but despite what you’re about to hear pretty much every day of your life; people with Down syndrome aren’t angels.) That our story isn’t a sad one, it’s a beautiful one. In other words I want to show them the power of our story.
Ok…But Why So Why So Many Physical Therapy Videos?
Because it’s part of our story…..and he gets to ride a elephant sometimes, why not!
But on a serious note, when we first started on this journey I had no idea what Noah’s therapy visits were going to be like. Were they going to mega hard for him? Could I come? Was it going to make him cry? Was it going to make me cry? (I can seriously cry like a little girl at any given moment, I promise.) Was it going to be boring (to him, or me!) Was was he going to do during his visits? I was clueless. I would have liked to have known what to expect. Sure, I could have read a number of the fantastic blogs that are out there, and that may work for most people, but I’m not like most people (really, I’m not) I wanted videos. As it turns out we receive a lot of emails from families who enjoy seeing some of the things Noah is doing in therapy with their own eyes. They find it helpful. (Which is good, because it’s a lot of work.)
In addition to that we receive emails from people all over the world (literally, all over the world) asking me to post more (and longer) videos of Noah’s therapy sessions. Many of these parents have no therapy resources where they live, and they actually use the videos to get ideas of things to do with their own children. (This of course comes with its own dangers since you should never try out anything you see on any of our videos without the explicit permission of your pediatrician and pediatric physical/occupational therapists. But still, that’s powerful.) Each and every one of these emails do 3 things for me:
- Breaks my heart for those families.
- Reminds me how incredible blessed we are to live in an area with so many resources available to our son.
- Causes me to think (often) about creative ways on how to get pediatric therapy services to these families and their children. But that’s another blog post for another day………
Anyways, sorry for the long blog post today. I just wanted to take a second (or a half hour!) to shed some light on why we post so many videos. I hope what you see (and read) here is encouraging….and shows you that the story isn’t as bad as some OBGYN’s would lead you to believe. In fact it’s not sad at all. It’s beautiful. I wouldn’t want to live in any other story. I really mean that. (And if need more proof there are over 12,000 families here that will tell you the same thing.)
To parents of children with Down syndrome: What are some of the things you searched for online when you first found out that your child had Down syndrome? What things were helpful? What things did you have a hard time finding? What things did you want to find, but couldn’t? And if you really want to be super awesome, I’d be interested in hearing what some of the exact phrases you typed into google were. Don’t worry we won’t judge. I promise.