Thursday, December 15, 2011


If you're a regular reader of this blog (or even if you're not) you probably know that my daughter Ellie has Down syndrome.  I thought I'd write much more about Down syndrome when I began this blog, but to my pleasant surprise, Down syndrome is not our life's focus, although that extra chromosome does impact many daily activities.

I mentioned recently that on Tuesday, Ellie had three different early intervention sessions.  She's never napped so well, and because therapy was the only thing on our agenda that day, I spent a lot of time thinking about milestones and skills.  I spent some time checking out the milestone charts (typical and Down syndrome charts) and mentally reviewing where Ellie has been in the past nine months.  Ellie's skills are "scattered," meaning she has some age-appropriate tasks mastered, but she hasn't hit every milestone along the way.

It's the crawling that gets to me.  Ellie can push up on her arms.  She can get her legs underneath her.  She wants objects that are in front of her.  She cries her little eyes out when she can't get to them with a combination of rolling and using sad little puppy dog eyes.  She hates to practice crawling.  I don't understand why, because she loves moving around and playing with toys, and I think her life would be way easier if she could just go get her toys.  But Ellie isn't crawling yet.  Sometimes, that makes me sad.  Her physical therapist is wonderful.  We do the exercises.  Ellie can do each individual part task required to crawl, but the big picture escapes her.

In those moments, I have to remember the rest of her story.  The fact that she started out life with a major surgery and the NICU.  The fact that she had open heart surgery, and couldn't really use her arms for six weeks.  The fact that she has low muscle tone. And most importantly, the fact that when Ellie is 25, it won't matter if she crawled at 10 months or 18 months.  

In the greater scheme of things, I know that milestones are just marks along the way.  They certainly aren't the source of Ellie's value.  What is valuable to me in the milestone realm is how hard Ellie works, and I think that's part of why I get down about crawling.  She works hard, and I am hoping for a payoff in terms of more independence for her.  

So of course, on the same day I'm a little bit sad about crawling, here's what Ellie decided to do:
* eat a Cheerio with a pincher grasp
* with assistance, pull to a stand
* play with two objects (one in each hand)
* drink from a straw cup (non-squeezy kind.)

And as proud as I am of all those things, they don't really matter.  Ellie isn't more valuable this week than last because she can almost pull to a stand.  The day Ellie crawls, we will celebrate, but she won't be any more valuable than she is right now.

Not that I'm going to hold back on bragging.  Because Ellie can eat a Cheerio!

Yep, she seems to know right when I'm sad for her, and then she shows off, in order to say, "Mama, I'm just fine."

I think that Ellie is teaching us important lessons on value, especially since we live in an achievement-driven culture.  If my kid is the last to crawl, I know she still has worth.  I hope I communicate that to her.

On a totally and completely different note, we're gearing up for some holiday fun around here this weekend.

Ellie is ready for the Christmas party season!
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  1. I love reading your blog, and it's so fun to read along and see you growing along with Ellie. The wisdom and love that comes through your thoughts and musings is really inspiring and lovely! I know you feel lucky to have Ellie in your life, and she's just as lucky to have you and Matt as parents. It seems God really knew what he was doing, huh?

    Merry Christmas to the three of you!

  2. My dad used to lick the cherrios and stick them to our foreheads...that's love! :)

  3. WOW!!!! She's doing sooooo great! Can't wait to see you guys this weekend. :-)

  4. My twins didn't crawl until almost 10 months and didn't walk until almost 14 months. Now they are 19 months old and they are running around like mad. I used to get blue when they were behind the averages (they were 6 weeks premature), but my mom would remind me that every single child is different. My mom had 7 kids, one walked at 8 months another at 14 and the rest of us were in between. Kids do what is normal for them, and whenever they do something new, it's worth celebrating. Also, I can't get enough of the video of Ellie eating. It is too much cute!

  5. Megan, you are so wonderful...I adore reading your blog...I feel like I've really come to know you and Ellie (well, at least as much as I can by just reading about you...;)) - but I think you guys are so amazing. I love that shot of Ellie with her leg youngest used to have to sleep like that...he wouldn't rest peacefully until he was stuck...;)

  6. This is great Megan. It's so true. When she's 25 it won't matter at all. And she's still SO little. She and Cora seem to have the same idea about crawling. I've realized with Cora that even sometimes when she CAN do things, she chooses not to. Sigh. But it doesn't affect their value in the least.

  7. I feel your frustration and pain with the milestones. I want our Madi to crawl too. She army crawls but refuses to get up on her hands and knees and do it. And just when I had a bad day about the crawling bit...she decided to pull to stand too!

    I really think that they sense our frustration and give us a little "something" to pacify us. And I do think that they know how to do it.....they just choose not to.

    Hang in there mama!!!

  8. Liddy is almost a year old and still isn't crawling. the strength is there, she just lacks the will. why crawl when its much more efficient for her to roll everywhere now. she just mastered sitting and still hasn't quite mastered the pincher grip. However, she is learning new things every day and I know we'll get there.
    They have a way of showing off when we get sad. I don't know how they know but they do!
    Merry Christmas!

  9. I love reading up on how Ellie is doing! Bella would much rather stand than crawl, too. Her legs seem so much stroner than her arms. And way to go on the self-feeding!! I'm also very hungry from looking at your photos.

  10. Hi there,

    Just catching up with your lovely blog. Your posts bring a smile to my face. Ellie brings a huge smile to my face.. she is totally adorable.

    I used to sit at the park and watch all the babies Lola's age crawling about, and think hmmm, when will my little peachface join them.

    Well she never did... at 12 months she walked, and at almost 15 months still doesn't crawl. Just walks, falls, walks and falls. Falls are becoming less frequent now, which I'm sure her forehead is grateful for!

    Lola did it her way and Ellie will too.

    I now wish that instead of watching those other babaies crawling about, I'd spent all my time watching Lola and marvelling at what she was doing.

    Enjoy that sweet baby of yours.

    Your words are beautiful & true.

    ash xxx

  11. Hi Megan, it's Laura Doyel. I found your blog through seeing your picture on a friend's fb page. Anyways, Ellie is amazing and beautiful and I think I want to print the picture of her in the microwave box just because it is that adorable! But here is why I am writing a comment instead of just stalking your blog. I have a baby, Harper. She's 13 months and she's only supposed to be 11 months. She was born at 30 weeks (while we were living in Guatemala) and spent a good amount of time in the NICU in Guate. She also has been scattered around the development charts for milestones and didn't crawl until the day she turned one. So it was hard, and I understand how frustrating it is but I guess it is important to keep looking at the overall picture like you mentioned and realize that it really doesn't matter if she's 6mos or 2 when she first crawls. Merry Christmas to you and your sweet family. Laura


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