Tuesday, February 8, 2011

love and fate.

If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any moment.
Marcus Aurelius

One year ago now, I was not allowed to work. I had been so graciously ushered into what was My Dream Job of working as a labor and delivery nurse - being a witness to the miracle of birth every day, every night, every shift - and it 

My own babies, my miracles. My digital photos only go back to 2004 so I don't have images from when Isaac and Egan were born (yet), but here they are in 2004 - and 2008 Jacob in the middle - and 2010 Amos on the right

It is an everyday occurrance, but to me -  a new baby coming into the world, and being present when that little slippery body takes its first breath - is a miracle every single time. I was (and still am) a complete novice in there as a nurse - but my reverence and respect and love for the mama and baby as a unit leaves me breathless - and I know it made me a nurse people felt blessed by. And I felt blessed by each and every one of them. Oh, that joy! I had tears at every single birth I was present at. Not even kidding. In my months there, I cannot recall how many births I was a part of, but I can tell you without uncertainty that I had tears and knew without a doubt that I was witnessing a miracle

And so it was not without some reluctance that I had to stay home due to all of the complications I was experiencing in my pregnancy with this wee boy we were brewing; our little Amos Abraham. The only one who had a solidified name before birth. It was chosen when we learned we were having a little boy, and boy-oh-boy, it stuck. It is my favorite of all of my children's names - but I can't quite articulate why that is. Amos Abraham Luyt. Solid.

I also remember shortly after that time - upon learning of his extra chromosome, the need for emergency surgery, the guaranteed long hospital stay - I remember mourning the possible loss of the use of the name if this little one was to not be born living. They told us that, you know? There was a darn big chance he would never draw breath outside of my body. 

And yet he did.

And then he came home.

Seems so silly and trivial and downright cruel and foul to have ever mourned something as insignificant as an extra chromosome after waiting and waiting to have a warm, breathing, squirming, and oh so beautiful baby boy in my arms - then waiting and aching for what felt like forever for this beautiful boy to come home from the hospital - a boy with a solid name. Amos Abraham. (fireworks just went off in my imagination - along with the sound Joel makes when he makes explosion sounds)

It does seem odd to mourn his Down Syndrome, but we did, I did - and of course that passed. The pain passed away, as it does, as it should - and what I was left with was this overarching, all-encompassing sense of joy, of love, of wisdom, an inner voice telling me that I had joined a new club, a semi-private club - but dude, is it posh. There is a secret in there - and you don't get to the the club, its secret, or reap the benefits if you haven't fallen in love with someone or something that is different.

I don't mean different in any way to be disrespectful, but we all know most of us have 23 pairs of chromosomes. Some people are born with that third 21st chromosome - a fact that makes them different than the general Joe Blow, Freddy Sixpack and Sammy Lunchbox kickin' it out there.

Normy Normalton on the left, Amos Abraham on the right (well, truthfully it's not Amos's karyotype, but you get me, right?)

It's just that - somehow - I mean, I know it's called a syndrome because symptoms run together and are displayed with some similarity in our little loves. Okay, so yeah - but there's something else. And I am becoming more and more convinced of it every day. It's about that secret.
Only those of us who have fallen in love with that extra chromosome know the secret.

I've thought it was Jesus peering back at me through the eyes of my baby. I still think that's true.

I've thought that it is an opening of the eyes, a broadening of the heart - when you fall in love with someone special like this - it makes you see that there is something special and yet something so incredibly normal in everyone who is different, and everyone who is the same, and we are all the same. Does that make sense? Before this, I felt sorry for parents of [seemingly] disabled children (as the world refers to them). But as I've said before - this is not a disability. Anything that creates and molds and nurtures this much good in the people around it cannot be a bad thing. It is an ability. A super amazingly beautiful ability.

I've thought how is it possible that that extra genetic information on such a tiny chromosome (21 is pretty darn small) can make someone so... hmm. So... happy? contented? joyful? restful? lovely? focused on what really matters? He is the definition of joyful. Nearly always. Seriously. The child is chill.

I've thought maybe it was that people like me - are given a baby like Amos for a reason. (people like me? not sure what that is. busy? ungrateful? selfish? bossy? perfectionists? prideful? knuckleheads?) But that's not it, either. Because we're all different.

I don't know why people are given a baby like Amos. But I know why I was.
I was given Amos because I needed him. There is an immense purpose to this child's life - and I for one want to hang on to his coattails and be witness to the miracles. I know I was given Amos because I needed him. I needed the gift of him and his ability, his gift.

Because that's what it is. A gift.

Hot damn that feels good to say. Suck it world, I have a baby with Down Syndrome and if you don't, you're missin' out! Ha! That's a huge part of the secret, I think.

And a year ago I had no idea I'd be this much in love.

Some people ask if we're going to have more children. And my answer is honest. I want to. Maybe. Yes. Only if God wants us to. I still feel like we're missing somebody. But here's another part of the secret. 

When Joel and I got married, I remember thinking (as many of us do) we need to have babies real quick because I was 31, and turned 32 literally three days after our wedding. We needed to get on havin' babies quick-like because the risk for having a baby with Down Syndrome increases significantly after [maternal] age 35. And here we had Amos when I was 34, and here we thought Down Syndrome was something we wished to avoid.

This is the other part of the secret - and the part I want to usher in a world of change with (think world of hurt, only kinder) is two-fold. Well, three-fold, really:

1) Having a baby with Down Syndrome is not a bad thing
2) Having Down Syndrome is not a bad thing
3) Down Syndrome alone does not define anyone, or their family

So what if we got pregnant again? Went for bambino numero five? Bring it, baby. If God wills it. 

And of course, months ago the thought crept in what if that baby had Down Syndrome, too? (the chance of a second baby with DS is less than 1%, justsoyouknow).

And I thought oh, I would just mourn again. And then fall in love again.

The shiniest, most fantastic and gorgeously refreshing part of the secret is this. 
I would choose this again. Actually choose it. Not mourn it, not Get Through It And One Day Maybe be Happy. Many mamas like me do, in fact, choose it again - there are so many families that have one munchkin with DS, and then adopt another. Or more.

(cue fireworks)

But you know what? The weird, controlling, mildly OCD parts of me thought if we were blessed with a little DS baby again - then we would have a matched pair.

About the thought of having another baby...

with Down Syndrome?

see the sunbeams cascading down onto him? straight from heaven. straight up.


happy tears. Bring it, baby.

Egan's post is still cookin'.  Joel is away this week again. I am rearranging furniture and itching to paint everything we own (as I do every late winter/spring)... and we patiently await the sun, and the dry land. 

Who knew Noah and his wife put up their photo inside the ark while they waited for dry land? From one of Jacob's favorite toys. I love this extra detail. Photo taken during a rare day of blissful sunshiney-ness.

The winner of the mittens, courtesy of www.random.org is:
#7 - Aimee, who said...
I have been meaning to send you a message for a while, and a mitten give-away seems to have been the perfect motivator :) I discovered your blog through Kelle Hampton's Enjoying the Small Things, and have been following your posts from afar for a little while now. I was drawn to your blog initially because of your desire to do in Canada, what Kelle has done for the NDSS in the US. I would be so happy to help with any project you take on and hope that you find one that is perfect for you :) Love from a very snowy Ottawa!
Congratulations, Aimee! Send your mailing address to lauraluyt@gmail.com and I will get those mittens out to you pronto, while you can still use them. And thank you for your kind words, and for joining the happy army. (thanks, Randi, for that one!) I'm excited to see what the future has in store for us. We will make a difference. I know we will.

My rearranged [actually only shifted slightly] living room is awaiting company - laundry basket, toys and all. If you feel like coming over, I'll put the coffee on in my amazing and wonderful new coffee maker. But that's a post for another day.

Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.
Marcus Aurelius

This was the first week I could look at those photos of Amos in the hospital as a new little wee thing full of tubes and needle holes and not cry tears of pain and sorrow and fear. I am happy to say I now felt pangs of joy and sentimentality in looking back and seeing him as the baby who has already grown and changed so much. I found myself missing him as that wee little baby, just like a normal mother. This is a good thing. It was a good week.

Have an good week. An amazing week. Live like you are different. Love the people with whom fate brings you together, and do so with all your heart.


  1. You are amazing. Your family is amazing. I love your blog. :)

  2. I have learned that I am jealous of you.
    Extremely jealous of your designer baby.

    Love your blog! Love your heart! Love you Rutherford's!!

    From one of your many #1 fans,

    Randall ❤

  3. Hey Laura - I had NO DOUBT in my mind, when I found out about the expectation of Amos, that you would be "this much in love" one day. I knew it because of who you are as a woman, as a momma, and as a follower of the Jesus. NO DOUBT. NONE. I also knew it because, though I don't have my own with an extra 21, I have had so many glimpses of that amazing secret in my work (in fact, my very first client as an slp student was a sweet little guy named Ryan and he had D.S.). And, as you know, I have my own unique kids, one with especially unique circumstances.

    Keep on loving and living...life to the fullest, overflowing, spilling out.

  4. This is my favorite spillin' of the heart that you have written thus far. And I love what Randi said about having a designer baby! SO true. I heart little Amos and miss cuddling and smoooooching his sweet little face. Have a beautiful day.


  5. mom, that was SO AWESOME!! I almost had tears in the corners of my eyes! Jacob and Amos [A.K.A. the star of the show!] together like that, oh man, that's beautiful stuff. sniff. well... I'd talk longer [seriously I'd probably talk for hours, see I'm trailing off right now:)]but... um...lets just say I kinda want to play with my friends outside sooo, bye.

    PS sorry but, I didn't know that amos's hair was THAT black and THAT long!...it was HUUUGE!! ok now I'm seriously going...bye...hi, oh right...bye
    hello, what? ohhh bye WHAT DO YOU WANT FROM ME I didn't even DO anything OK ya got that punk? o-kay I believe you...[wink]ok you got it so I'll be on my way BYE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  6. not sure what I like better...your post or Isaac's comment.

    Love you, Isaac.

    Love all of you!
    Aunty Sarah

  7. i just want to smooch those little cheeks...ugh. boy is KILLIN me with those eyes.

    big, warm squeezes and love.

  8. Wow this made me well up like crazy!!

    Again, perfect attitude. You put to words how I feel about my son with autism. It's true, we ARE part of a club, even though our kids are not the same, I feel this crazy warm feeling towards other moms with exceptional children. I just wanna hug hug hug ALL OF YOU! We're in the same club, just different departments.

    When my son was first diagnosed I would see mom's with exceptional kids and would just burst into tears...I'm emo like that.

    Anyway, keep it up...I love your writing. This blog is a gift.

  9. just discovered your blog. its beautiful. your writing is incredible and i love reading your life stories. you are very blessed. inspiring!!

  10. Oh, you lovely, lovely people. You do me such good. My heart is all a-sparkley as my eyes are awashed in tears. Bless you, all.

  11. OH! I love this! I just had my #4... a baby GIRL who happens to have that extra special chromosome. :) (This after 3 "typical" boys). And I, too, had/have all the same thoughts as you. You are amazing and so inspiring! Thank you for writing this blog. I will come back often!


make no mistake, I am smitten with your words. please say hello, or pour something out - you will make my heart happy.

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