I’ve heard it said a thousand times that there’s a special bond that exists between parents of children with special needs. After almost nine months into this exciting journey and meeting countless parents along the way, I can honestly say I agree. (Although I’m pretty sure it’s as equally true for all parents.)
Two (False) Fears About Raising A Child With Down Syndrome
When Noah was born one my many fears was that my wife and I were left to this world of Down syndrome all alone. (Well, not really alone. God was well aware of and very active in what we were going through. After all He knew about Noah’s extra chromosome well before we did.) We had lots of friends who had children, but none (at the time) who had children with Down syndrome. And now we were that family. All of our friends told us they understood, but they couldn’t really understand. While we were thankful to have such a wonderful group of friends, the thought of not having anyone in our life that could really understand what we were going through saddened me.
Another fear I had was that our family was going to be so much different than a typical family. I imagined all of the parents of typical children playing at the park with their children talking about whatever it is parents of typical kids talk about (spoiler alert: they talk about the exact same stuff) while my wife and I struggled to find a way to join in on the conversation with them. to them. I imagined it going something like this;
“Wow…your little guy has two arms?! Cool! Our son Noah has two arms also!”
After all, our life was going to be so different from theirs. Right? It was going to be so hard to find things that our family had in common with other families. Right?
It turns out I was wrong on both accounts. In fact I learned some valuable lessons about parenting in the first few months after Noah was born. You may (or may not) have a child with born with Down syndrome, but I think these two lessons are useful to any parent.
Lesson 1 – Your Imagination Is Much Lonelier Place Than Reality
Shortly after brining Noah home from the hospital we got linked up with a couple (Joel and Emily) whose middle son, Seth, was born with Down syndrome. (No offense to any of you with a 3 year old, but Seth was seriously the cutest 3 year old we had ever seen! ) We spoke over email, Facebook, telephone, and text message and quickly became close friends. Several months later we took Noah on his first vacation down to Houston so we could all hang out. I’ll never forget how they treated us like we were part of their family.
I’ll be honest, there were tears that day. My wife and I had a lot of emotions, and it was good to cry with someone who really understood what we were going through. In fact as I was writing this I realized something; that was the last time I cried as it relates to Noah and his Down syndrome diagnosis. That also happened to be the first family that we had been around since Noah was born who could honestly say, “I understand.” Hmmm..maybe there’s something to that.
We continue to be close friends with Joel, Emily, and their family. In fact Noah and I got to take Joel to In-N-Out Burger today while he was in town visiting family. As you can see Noah loves Joel (and vise versa.)
Since then I have met literally hundreds of families who are on the same journey as us. Some of them may have different pit stops along the way, but we’re on the same journey none the less. I’ve met them in person. I’ve met them through this website. I’m met them on Facebook. I’ve met them on Twitter. (I’ve even met them at a resort in Colorado!)
It doesn’t really matter where I’ve met them, what matters is that I’ve met them. They exist! We’re not alone! And if you are a parent raising a child born with Down syndrome (or even if you’re not) you aren’t alone either. Although it may seem at times like you are at time, you aren’t. I promise. (Just visit Noah’s Facebook page if you ever doubt that. There are lots of great parents just waiting to met you!)
Lesson 2 – Your Family Is Much More “Normal” Than You Think
As we got to know Joel and Emily I would often say to my wife;
“Wow…their family sure looks normal!”
I mean after all, they have a child who was born with Down syndrome; aren’t they supposed to be ‘taking care of him’ or something? How can they be playing the Wii…? They have a sick kid..! (Oh, and it turns out Down syndrome isn’t a sickness. The flu is a sickness. The chicken pox is a sickness. But Down syndrome isn’t a sickness. Turns out it’s actually a blessing! See, I told you I didn’t much much about all of this at first. I’m learning, just like you.)
After getting to know Joel and Emily (and about a thousand other families) I quickly realized our family wasn’t all that different than a typical family. Sure we may go to a few more therapy appointments than a typical family. We may met our medical deductible quicker than a typical family. We may have to go to more parent teacher conferences then a typical family. (If you don’t have a child with Down syndrome I’m sorry, that’s sort of an inside joke!) And we may be much more sensitive to the “R word” than a typical family. But the truth of the matter is we have much more in common with a typical family than I initially assumed.
If you’re a new parent, and you were hoping having a child with Down syndrome automatically qualified you to be the strangest couple in your neighborhood, I’m sorry to disappoint you. You’re still going to have to wake up at all hours of the night to feed your crying baby. You’re still going to have to change diapers (yes, kids with Down syndrome poop and pee just like typical babies…Gasp!) You’re even still going to have to give him baths….yes, like with real water! Don’t worry, contrary to what you may read on the internet, they won’t melt…!
When Noah was first born I spend countless hours reading “stuff” online trying to figure out what sort of special things you had to do to take care of a child with Down syndrome. I figured there had to be a special list, right? I imagined it looking sort of like this:
- Never expose him to bright light.
- Never get him wet.
- And the most important thing, the one thing you must never forget: no matter how much he cries, no matter how much he begs…never, never feed him after midnight.
Turns out that once again my initial assumption was wrong.
It should be noted, that I have also met a lot of weird families since Noah was born. Let me assure you, in the kindest way I can:
“…those families aren’t weird because they have a child born with Down syndrome.. Those families are weird because they’re just weird.”
If you are a parent raising a child born with Down syndrome (or other special need) please know that although it may feel at first like your family is going to be that family, I’m sorry to disappoint you. You aren’t. (At least not to because of your new addition. See paragraph directly above.)
Those are two fears of mine that didn’t come true. What about you? What are some of the fears you had when you first became a parent (or a parent of a child with special needs) that never came true? Please take a second to leave a comment; what you have to say could be just what someone else needs to hear.