Thursday, September 5, 2013


When we first heard the words Down syndrome, the delays in early milestones were the farthest thing from my mind.  I didn’t even know that early physical delays were a part of Down syndrome.  Several doctors mentioned getting us signed up for early intervention services, a few made mysterious comments about how, “it might take a bit longer, but he will walk.”  Wait, what?  Of course he will walk.  I’d never met any adults, or children for that matter, with Down syndrome who don’t walk.  I wasn’t thinking about crawling or walking or rolling over or head control.  I was thinking about the cognitive disabilities that usually accompany Trisomy 21, and I was thinking about their long term impact on me.

So, I’m surprised how randomly the pain of missing milestones hits me.  Most days it doesn’t.  Most days I don’t even think about it.  But then I pick up a newsletter from my church about teaching my 8 month old about Jesus, and it mentions that “babies this age” are using their pincer grasp. Or I see pictures in my due-date-message-board of babies Max’s age who are sitting up or crawling or pulling to stand.  And most days it rolls right off, I know in my head why Max is moving at a different pace.  But every now and then I get sideswiped.  The reference to “normal” comes out of nowhere, and it’s like a hit to the stomach.

Maybe it’s because, all of a sudden, I remember that we’re not just talking about whose baby sits first.  We’re talking about a lifetime of moving on a different timeline.  A timeline that I want to love and respect, but that I am still learning to understand.

To those of you with babies the same age (hi Lauren!) please don’t stop bragging about your baby’s new skills.  They are wonderful, they deserve it!  I don’t want to be cut off from your joy because it is sometimes uncomfortable.  And I’m finding that the best medicine for my worries is exposure.  The more happy babies I see sitting and rolling, and holding their heads up without a bob—the more comfortable I am with my own little guy doing things in his own time.


  1. Ha!!! Am I your most prolific commenter? :) I really do enjoy reading about your journey! I don't know how much I can brag here anyway - my kiddo is nowhere near close to crawling. And when sitting up he still falls over a lot! Norah didn't crawl till 11 months and even then she didn't really get into it :) I can see how it's more complicated for you in that I would wonder is it a D.S. related delay, or is this his natural pace on its own??? etc. Walden doesn't do a pincer grasp yet either, although he tries sometimes. He can kind of get a baby puff snack thing on the side of his fist and then he can eat it :)

  2. Oh, that timeline you talk about...I get it. I am still trying to grasp and understand it every single day. I understand your words and feelings in this post. Just know you are not alone in how you feel because there are mothers, like me, that understand exactly how you feel. As his personality blossoms as he gets older, the delays, for me, were easier to handle. Instead of focusing on the what she could not do, I started seeing all she could do even when noticing her typical peers were doing way more. And, the little person she started becoming captured my heart even more than you can imagine. So, you think he has your heart now...just wait. It is a love that goes beyond words. Other moms ahead of me on this journey told me that too. I did not understand on the time when Kristen was an infant. Now, six years later, I completely understand it. Keep up the good work with that little man...he is doing amazing...and so are you.