Happy Because…

This week’s “assignment” is to list a few reasons I’m happy about Down syndrome. Without further ado, I have a few to share with you!

I’m happy about Down syndrome because of all the low tone snuggles I’ve gotten over the last 16 months. Low tone can be a struggle when you’re working on gross motor skills, but there is really nothing like a low tone snuggle. Babies with lower tone just…melt. This is sort of hard to describe and I probably won’t do it justice. It feels like a no-holds-barred, total surrender into snuggling. I’ve held other babies and there always seems to be a sort of tension to their bodies – a physical alertness of some kind. (Maybe that’s just the massage therapist in me talking.)

With Rowenna, not so much. Even when she is being curious and looking this way and that, she is content to just melt into your arms as she takes in the world. When you read a book with her, she just nestles right in. She chatters and points at pictures, but there’s a warmth and a weight to her I’ve not experienced holding babies with typical muscle tone.

I love this about her and it makes me happy that Down syndrome is part of her.

I am happy she has Down syndrome because that extra chromosome brings with it some truly charming physical characteristics. (And to be clear, not every person with Down syndrome has the same characteristics.) Rowenna is tiny. Petite. Itty bitty. At 16 months old, she weighs just 18.5 pounds. She’s the perfect size for snuggling. She’s the perfect size to be toted around on your hip. I love the smallness of her, how I can wrap her up in my arms.

I also love her tiny little hands and feet. Her fingers and toes are teeny. Her hands and feet are delightfully chubby. Rowenna also sports what I find to be the cutest marker of Down syndrome – a sandal gap. It’s a wider gap between her big toe and next toe, making her feet look perpetually ready for a tiny pair of flip flops. There’s something about that little gap that is endlessly charming. When they took her footprints right after birth, they captured a perfect inky image of her sandal gaps. At the time I didn’t even realize what they were, but now I cherish those perfect footprints.

And one last thing that makes me happy is the total freedom I feel in relation to milestones. I’ll never know if I would have been that mom that worried constantly about meeting milestones on time (my guess is no, but you never know) but with Rowenna, I feel completely free from that worry. I know she will meet milestones and I know she will get there in her own time. I literally threw out our copy of “What to Expect in the First Year” when we brought her home from the hospital because I knew it just didn’t apply anymore.

Feeling that freedom doesn’t mean we don’t have expectations. We just don’t worry about when she meets them. When she does meet a milestone, we take a million pictures and make phone calls and we revel in that accomplishment. We don’t say “Crawling? Check. Now what?” We have time between milestones to celebrate and soak up what she is doing.

Maybe that, in itself, is the greatest gift of Down syndrome. Time. We take our time with Rowenna. We live more deliberately. We think and plan and devise and develop and slowly soak in the joy of having Rowenna in our lives.

This girl is pure joy, folks.

Rowenna Enjoying Some Fall Fun!

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5 responses to this post.

  1. *SMOOOOOOOOOOOOOOOOOOOCH!!!!!!!!!!!!!!!!!!!* big, fat, juicy hugs and kisses. Okay, maybe not juicy, but for sure they are big. She is just *too* cute. One thing I was thinking – 16 months? 18.5 lbs? That’s the same size as Moxie. When was Rowenna born? OH RIGHT – Moxie is 17 months now, isn’t she? I was thinking of last month, at our well-baby when she was the exact same weight and age. Wow.

    Reply

  2. She truly is adorable.

    It’s also funny that you mention the sandal gap…my husband (who does not have Downs) and Little Man (who also does not have Downs) both have the sandal gap. I think it’s hereditary in the family because, if I remember correctly, my father-in-law and some of my husband’s cousins have it, too (and none of them have Downs).

    I never knew it to be a trait of Downs…I just thought my husband and kid were weird.

    Reply

  3. Posted by Marita on October 13, 2011 at 3:56 pm

    That is very sweet. I am really excited that we’ve set a rough time period for you guys visiting. I just cannot wait to meet your Miss Ro.

    Reply

  4. So sweet and I LOVE that hair!

    Reply

  5. Posted by Ashley Harris on October 13, 2011 at 10:13 pm

    It is a true blessing! My daughter is now 16 months & weighs 16.4lbs. There’s days that her, her brother, & I curl up on the couch & snuggle all day long (absolutely LOVE her snuggles). As for the ‘sandal gap’, let’s just say she has quite a few sandals already! 🙂 I don’t worry about her milestones. The hardest part is I have 3 friends that all have kids the same age as my daughter & all 3 of them are walking. Even tho she does not walk, she can get to where she wants to go by rolling. lol. Your daughter is just so precious! We truely have been blessed!

    Reply

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