Noah's buddy!
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.)
When Noah was born one my many fears about raising a child with Down syndrome 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.
There’s no need to be sad like Wall-E!
Shortly after brining Noah home from the hospital we got linked up with a couple whose middle son, Seth, was born with Down syndrome as well. 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.)
Noah’s buddy!
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!)
You aren’t a family of Stromtroppers!
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…!
Sorry, but you’ll still have to feed your baby in the middle of dinner.
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:
Turns out that once again my initial assumption was wrong.
You have a baby, not a mogwai!
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.”
Straight up.
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 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 of a child born with Down syndrome 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. 🙂
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"Let me assure you, in the kindest way I can, those families aren’t weird because they have a child born with a special needs. Those families are weird because they’re just weird. Straight up."
best. paragraph. ever. thanks for making me laugh out loud today.
Ha,ha..I'm glad you liked it!
As a youth communicator I (sort of) speak for a living. When you speak orally it's fairly easy to express humor and sarcasm. In a blog like this I try to write the way I would speak if we were all in a room together. However I loose tone of voice, body language, and many other advantages spoken word has over written. So I worry if our readers can discern all of my *personality* in the context of a blog like this.
Comments like yours give me encouragement! :) So thank you.
Do you have a child with special needs? How did you find our blog?
P.s --- you should grab a Gravatar. ------> http://en.gravatar.com/
Our little Patrick was born with DS in april of this year. He had an imperforate anus and was taken from me and rushed to Childrens for emergency surgery. He now wears a colostomy bag. I had all of the feelings you spoke about. I used to envision myself surrounded by all my boys (I have 5) in family pictures. When PJ was born, that picture changed. But all of the fears have melted away, in fact, they melted away pretty quickly. Now, when I hear or read something about how all babies poop the same way, I just laugh. :)
Thanks so much for your comment Lisa!
I just checked out your blog and you guys are doing a GREAT JOB!
Be sure to tell Tommy Noah and I are proud of him also!
We are glad you have connected with us, and are so glad to be on this journey with you. If we can ever do anything for you, please hit that contact link above. We look forward to staying connected with you.
By the way if you read my wife's post on the top resources? If not, there is a TON of great content there I think you may find useful. -----> http://noahsdad.com/top-resources/
I sure am enjoying your blog! When we found out we were pregnant I was 41. I was blessed by extra tests because of my age. When it came to Trisomy 21, we had a 50/50 chance. Having 5 other children, we wanted to know whose life we would be celebrating, so we ordered an amniocentises. I have to tell you, God had sooo prepared my heart. So much so that the entire time I was waiting for the results, I was literally talking myself "down" to a typical baby. The nigt of the test we were out to eat and a couple w/ a bay who had Down syndrome were seated behind us. My heart yearned for that child.
When the tests came back positive, I celebrated, my family celebrated, my friends celebrated. There have only been moments when I realize the limitations Jillian will have. They are ALWAYS followed by epiphanies of what she can do.
As for being "that" family! I am sure you have had the same experience we have, we are now a part of a bigger family, part of a "club" you can only get into if you are blessed by God with an extra chromosome 21.
Thanks for your comment Cindy. That's such encouraging her story.
Have you "liked" our Facebook page? We'd love for you to put up a picture of your kid-o on there!
We are glad to be on this journey with you. Let us know if we can help in any way, and keep us posted on how things are going!
I am so happy to be a member of "that" family...so much joy..so much laughter...and all the extra friends...
..need I say more? We have been blessed...I think... ;-)
And by the way...
thanks for giving my such a good laugh...
..I guess the only common part with our kids and the "Gismo" over here..is that they are very smart...and very lovable ..and cute...
Thanks for your comment!
By the way, I checked out your website, thanks for commenting and for sharing your link with us! (We love checking out everyone's sites!)
Where are you guys from, and how did you find out about us? It's always fun to learn about how our friends found out about us. :)
i also have a granddaughter with downs, felt so many emotions at first, she is now 9 and is the light of my lfe, so much love, she is a wonderful little girl and I can't imagine life any other way.
Diane,
That's so awesome! Thanks for sharing, I'm sure she's a doll.
We'd love for you to post a picture on our Facebook page! ----> http://facebook.com/noahsdadcom
Be sure to subscribe so we can stay connected http://noahsdad.com/subscribe/
My husband and I have joked about Cora being a Gremlin too, based on others' expectations of what her life is like. Although I think that may have started with our desire to not have to feed her after midnight!
Ha,ha...! That's awesome!
How old is Cora?
Excellent blog. I especially loved your inside joke. How true it is. Its so nice to know others realize how truely blessed we are. My dad asked me the other day how often I get bummed out having a daughter with special needs. I took one look at her and said, 'Never'. And I meant it. I can't or wouldn't want to imagine life without my little angel. Bless you all.
Dawn I agree.
By the way, are are a couple of great posts that I think you'll enjoy. Perhaps you could forward to your dad. :)
http://noahsdad.com/blessing/
http://noahsdad.com/nordstrom/
You guys rock!
My biggest fear was would the nursery we had in mind be able to have her attend. They were very quick to say of course they could and they have really gone out of their way to help Lauren and us. Our portage worker goes there twice month, they are learning makaton and they paid for the Down Syndrome Association to go in and educate ALL the staff as to how best they can help Lauren. All my fears completely sorted here. I do still have worry pangs about the future but if we work hard to help her overcome life's little hurdles today that will take care of itself too. She drank from her bottle on her own yesterday at 20 months.
That is so awesome! It sounds like you guys have a GREAT nursery. Where are you and your family from?
Also what is a "portage" worker? I'm not filimler with that term....
Thanks for your comment!
Right on brother. Joel and Emily love that little Noah!
You like how I left the last name off..! ;)
We can't wait for you guys to come visit us when we move into our house..! Hopefully we can talk y'all into it! :)
A few years ago, a friend of mine who was a new Mom called me with a concern. Her child was constantly banging his head on the high chair. I told her, "Oh, don't worry, Teresa did the same thing when she was his age." I hung up the phone and chuckled out loud as I realized I had just reassured my friend that the behavior her child was exhibiting was perfectly normal because my child with Down syndrome did the same. I wonder how much comfort that could have brought that poor nervous mother! But, at the time of our conversation, it didn't even cross my mind that I would worry her, because to me, everything Teresa does is just part of the "normal" big picture of life with her -- a wonderful, yes at times challenging, and often gloriously unusual, blessed life!
hahahahaha now that's funny!
I read that out loud to my wife, and we were both laughing.
In fact we have said it's sort of awkward when are pregnant friends ask us about what it was like to have a baby....I always want to say, "Umm...talk to us after you have your baby!" :)
You guys rock!