I Forget That Our Son Has Down Syndrome

I forget Noah has Down syndrome.

Seriously.

We didn’t find out Noah was born with Down syndrome until about four hours after he was born.

So I’ve known Noah when I thought he had the same number of chromosomes as you and I, and I’ve known Noah after learning he was built with a little something extra.

And I can say with absolute certainty that there is no difference in the way I see him.  Not at all.  It’s 100% same.  He’s my son.

And I’m head over heels in love with him.

Oh, and I wouldn’t change one chromosome about him. seriously.

Doctor’s Appointments Are My Kryptonite

Doctor's appointments have the same effect on me.

Not long after arriving home from the hospital with Noah the strange mix of emotions we felt after learning he had Down syndrome went away, and Noah was just Noah.

We saw him no differently.

He wasn’t “our son who has Down syndrome”.

He was simply “our son.”

Sure, we had to take Noah to a few more appointments than other babies. But it just sort of became our new normal. We didn’t think about it much.  Down Syndrome faded into the background of our life, and to be honest we don’t even really give it much thought.

Noah just became Noah.

And since then we really don’t even think about Down syndrome all that much….

….until Doctor appointment days.

Hi I’m Noah’s Dad, And I’m  A Worryaholic

I may worry, but he sure doesn't...!

Ok, I’ll admit. I worry too much.  I’m a worrier.  I worry about stuff.  Ok..I feel much better now.

In fact, if you happen to know of a nice worry rehab clinic somewhere (preferably in Hawaii, or the Bahamas) please let me know, I’ll be glad to go. 🙂

We had an interesting first few weeks of Noah’s life. It seemed like every appointment we went to presented us with a new challenge.

So now I sort of have this anxiety  feeling when Noah has a doctor’s appointment.

I usually don’t even think about them (since we schedule them so far in advance) but when I see that little reminder pop up on our calendar, my stomach starts to tighten up a little bit.

I try really hard to just trust God and not be anxious, but that’s easier said then done.

 

Oh no...!

I worry about the doctor finding some new issue.

I worry about him not gaining weight.

I worry about his cbc test coming back positive for leukemia?

I worry about the hole(s) in his heart not closing up on their own.

(Which then causes me to worry about what if they have to do heart surgery on my little boy….)

I worry about hearing tests….What if he is deaf?

I worry about vision tests…What if he can’t see?

I worry about speech tests. What if he can’t talk?

I worry about a million other what if’s?

Like I said, on most days I totally forget that Noah has Down syndrome.  I don’t even think about it….

…except on Doctor appointment days, I do.

I’m not sure why doctor appointment days bother me so much.  God has always been so faithful and gracious towards our family, so  have no idea why I worry at all.

But I do.

Learning To Parent, Means Learning To Trust God

Having some fun while we wait for the doctor...!

I’m quickly realizing that learning how to be a parent, and learning how to trust God in all areas, go hand in hand.

I wish seminary offered a class called, “How to never worry about your child, and be super awesome at trusting God in one semester.” I’d take it.

Oh…let me get to the good news…

God showed his amazing grace to us again today with two fantastic doctor’s appointments.

Noah’s hearing test came back great, as did his visit to the urologist.

God is good. How long will it take me to fully realize that’d

How about you moms and dads, (or whoever else) are you a worrier?  Come on, the fist step is admitting you have a problem. 🙂

How do you deal with the “scary” stuff that comes along with parenting?  We’re rookies at this whole being parents thing…so your wisdom is always welcome!

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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

  1. We certainly don’t take hearing tests for granted at our house. Way to go Noah!

  2. Sylvia Caruso says:

    Way to go Noah!!! God is good.

  3. Yay!!

  4. We found out The Biscuit has Down syndrome when he was 3 days old, so I totally get that “he’s my son” part. Also we found out that he’d need open heart surgery before they told us they’d called in a geneticist because they suspected Down syndrome. Our attitude was, “You can live with Down syndrome. You can’t live without your heart, that’s the one we are going to worry about.” I think it really helped us to see Down syndrome for what it is and not dwell on it too much. Also, heart surgery, while not easy for us or him, was not as hard as it seems when you think about it. Our choices were surgery or a life-expectancy of 4 years, maximum of 7. Not really a choice, right? You just do it because he needs it, same as the doctor appointments.

    It is possible that my attitude while pregnant has something to do with the attitude I had about the surgeries (he had 2). I have 3 cousins who are deaf, was working as a Sign Language Interpreter (truly my dream job) and I am willing to admit that while I was pregnant I prayed for 10 fingers, 10 toes, and oh, if you have a Deaf kid that needs a mom I would so be happy to take that on! So here I am with a son that is pretty much non-verbal at age 6. I believe that my son and God looked into my heart together and decided I was the right one for him, and I try not to look at it any other way. I have my days where I’m just sure that I gave him a bad egg (I was 38 when he was conceived), but most days I’m happy and sure that if they trusted me then I can do this.

    You can do this.

    • Wow. Thanks for your comment!

      You story sounds a lot like ours.

      I have not finished writing all of our story on the “Our Story” part (up top.) It’s actually only 1/2 finished. I’m hoping to get some time to finish up in the newt few weeks.

      You can read more about it on my personal site (http://rickwsmith.com/blog/update-on-baby-noah-and-some-major-prayer-requests/) but basically right when we got home we were told to come to the Doctor’s office..we went and they said Noah’s newborn screen came back positive for GA-1, which could kill him. Great…

      So after dealing with all of that, and trusting in God like never before, it turned out to be a false positive….God’s good like that.

      When that came back false-positive I had zero concern with Down syndrome. GA-1 could have killed him…Down syndrome is no biggy compared to that. I remember praying, “God…PLEASE let my son just have Down syndrome….” I never thought I’d be praying that prayer.. 🙂

      Good to connect with you, you guys sound like great parents. And don’t think you caused “down syndrome”…..God’s way bigger then that…you were right when you said you were the right one for him..in fact that is no one more right…:)

      God custom built that kid for you, and vise versa…..there is no better mommy in the world for that little one then you….never forget that. 🙂

      Looking forward to learning more about your family, and I’m really digging your Gravatar!

      • You’ll probably find more about me on Twitter than on my blog. I haven’t posted there in I-don’t-know-how-long. I’m working on setting up a schedule. Heh. I’m a great one for retweeting all sorts of causes and can turn anyone’s issue into a Down syndrome issue. Example: I support Human Rights Campaign (hrc.org) because if you can decide today that LGBT people don’t deserve certain rights then you can decide tomorrow that people with developmental disabilities can’t have certain rights too. I’ll stand with them today with my son safely behind me so that They can’t get to him. I hope that makes sense. Just a warning about the odd mix of things that you’ll see in my tweet stream.

        I think that you are doing great work for all of us with your 1-minute videos, promoting the sameness while showing that our kids aren’t just 2-dimensional “little angels.” I appreciate that and look forward to being an active part of the community you are building here. And I like my Mr. Potato Head too. 🙂

  5. We were the same way. Found out our son had Down’s 5 minutes after he was born. Not the most fun way to experience birth. The first 3 days were terrible, but completely forget about the Down’s until Dr’s visits. We had the same issues, problems weight gaining, hole in his heart (and subsequent surgery…good times, good times), but when we hang out first thing in the morning, every worry goes away….I love waking up in the morning. Good luck with your boy.

  6. I love your blog – and your love for your son. This does get easier and the memories of the stress will fade.

  7. Hi Noah,

    My nephew was just born on Oct 26, 2011 about a month early, and the tests just came back positive today for Down’s Syndrome. It’s devastating news, and I can’t even imagine what my brother and sister-in-law are feeling. I’ve been researching online to learn everything I can about it, and found your blog. It has been really uplifting for me and I’m going to share it with them. I just wanted you to know how much I appreciate what you’ve done and hope that you keep it up! Thank you, Jessica

  8. Sorry can’t help, I worry too but more about the future, what if she doesn’t get a little sticker on her hand if she doesn’t write nice & neatly (I solved this one, I will speak to the teacher), what if she gets bullied (solved that one too, she is so happy she will laugh at bullying as long as I make sure she grows up confidently she is the best thing ever), will she have friends, will she be able to cycle on two wheels (yes! cheering me saw a boy with down syndrome on two wheels the other day). You are so true, it is such a shock hearing that she has down but when you hear two days later she only has one heart valve and needs an op that suddenly is no longer a priority. I think it also has to do with getting used to your baby. I saw immediately that she had down but noone said anything until the following day…they weren’t sure! You step on the rollercoaster and off you go, the operation went ok, unbelievable how do they do it! Marjolein didn’t worry, when we walked her to the ok in her cot she was still laughing and raising her little legs, it was just me nearly cracking up!
    One thing though, you think your Noah is the absolute best, so do I about Marjolein, but both of us are ‘new parents’ you don’t think every other parent would say the same no matter what child? * LOL * I think so!! 🙂
    I got a good rhyme on one of her ‘Congratulations a daughter’ card, it is still stuck on the cupboard it cheered me up that much. I will get it when I am home and see whether I can fabricate a good english translation.
    Cheers!
    Martine

  9. hi Noah’s dad, i was touched when first read your story on noah’s arrival. we had the same experiance with our bby-born on 21 mac 2010 ( world down syndrome day) only that your peadiatrician was so nice n full of emphathy. our pead was telling me so bluntly that our son was down…but Allah helped us to be strong. only people like us would understand how we feel..n how we love our bby so much…no matter what. almost forgot to introduce- i’m from malaysia. Arif’s mother. i wonder if u’ve heard such a treatment called stem cell for DS baby…? here in Malaysia we have that facilities for stem cell treatment. here i give u the link if u want to know more. our Arif had gone tru this treatment twice already. improvement? yes! tremendously. http://www.fetal-cells.com/index.php?Content=down_syndrome

  10. like u i didnt know that my son matthew had down syndrome until after he was born, he was diagnosed at 3 days old, i was had only just turned 20 three months before i had him. he is 7 in may next year and there are huge chunks of time that i forget he has down syndrome, forget he has a minor hearing issue and totally forget his lack of speech because as his mother i understand him anyway!! then like u my stomach gets in knots when the doctors and hospital appointment rolls round because even though i know his problems i dont like hearing about what they think is wrong with him because in my eyes matthew is perfect as he is. i worry like you that they will find a new issue and to a degree that never goes away……………..when matthew started school i started being impaitent for the parent/teacher meetings because i love hearing about what he CAN do rather they what he cant do, i love hearing that matthew is so popular amoungst the older children that there is a rota of which child walks him from the bus to his classroom with his escort, i love hearing that matthew has many friends and is never left with no one to play with and most of all i love recieveing his drawings and paintings and seeing the smile on his face as he shows me what he has done at school that day.

    i understand you forgeting your beautiful little man has down syndrome because i too forget Matthew has it most of the time. he is now and will alway be just my son, and like his three year old sister lucy who was born mainstream (because i hate the word normal!) he is my world. they both are my reason for living and i love them to the stars and back

  11. Lovely to see such a proud daddy, and why ever not, his adorable after all. Love the pictures together with your loving words it makes a beautiful read. I hope you have a fantastic 2012. Claire Louise.xx

  12. I love the way you talk about your kids!
    In the Disability Community, we call it, People First language!
    (I have a disability, cerebral palsy.)

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