Thursday, February 7, 2013


I was told by a therapist not too long ago, as we watched Jaxson struggle to reach out and grab a toy, that most ‘typical’ babies struggle with something like this for only a week, before it’s mastered and they move on. Jaxson has been struggling with it for well over a month. I watch his little brow furrow and his eyes cross as he tries desperately to grab a hold of that colorful little toy just inches away. He gets so close, pinches it with his fingers, then drops it. And so we begin again.
At first, hearing this statement hurt. My baby was indeed dragging behind, even if with something small. But I’ve had to stop myself. I’ve had to really think about this, lay-awake-at-night-tossing-and-turning think about this. What is it that matters most to me? That my child rushes through his milestones? That he grows up quickly? That he looks and functions like everyone else does? That he outgrows his need for his mommy sooner than later?
No, no, no, and definitely no.
Thinking back to when Jaxson was first born, when the joy and empowerment of bringing a child into this world was replaced by fear, doubt, and grief, I never once thought I would be where I am right now. I had hoped I would be, but could not see myself in these shoes. As guilty as I felt then (and even now for ever thinking it), I was not sure he would bring me happiness, or fulfillment; I was not sure I could love him or protect him or guide him as I would another child. I was terrified.
And there are still times, fleeting moments that pass too quickly to leave any significant change in the course of my day, that cause the slightest twinges of remorse, the slightest pin-prick of fear that I felt the day he was born. These are tiny moments I try not to notice. Like when I see Jaxson next to another baby his age or even a bit younger, I try not to compare. I try not to notice the ways in which he is slowly falling away from the “typical” path of a child his age. Now, don’t get me wrong, every child will do as they please. I’m not saying I expected him to follow in exact footprints. But there are some obvious differences now. I can see them when I observe him with another child. I can see how much more sturdy their head control is. I can see how easily they reach for a toy and hold it close to them. They roll over with more ease. They’re closer to sitting up or crawling. They take in solid food. I notice the shape of his eyes more too, the way they pinch at the corners. I notice the flatness of his nose. How short his arms are, how stubby his legs. I notice how much harder he has to work towards something that comes so naturally to others.
I was told by a nurse after he was born that comparing my child to another would be one of the biggest mistakes I could make. Though this can be true in some cases, some that I’ve obviously come to notice as of late, I think all of this has taught me something:
I can see now that I’ve been given the gift every mother wishes she could have: to keep their baby their baby just a little bit longer. I have been given a few extra sweet moments with my baby that I would otherwise not have. He may need me to support his head a bit longer, he may need a bottle a bit longer, and he may not crawl or run away from me too soon. I may have to carry him around while other moms are fighting to hold tight to their little one’s hands. He may babble longer before he completes a word. I may get a few more close moments of feeding in my arms instead of a high chair.
But there will come a day, as with any child, where he lets go of my hand too, a day where I fight to keep his tiny fingers in mine. He won’t need me to feed him anymore. He won’t need a physical therapist. He won’t need me to help him sit up, or grab things or hold his head up. He’ll beg me to let him put his own clothes on. He will bathe himself. One day, he will tell me those five bittersweet words that leave a mother crying both tears of joy and sadness, “I don’t need your help.” And I tell you what, all of those moments I got to hold onto just a little bit longer than most, the one’s that I feared so deeply at first, will be the sweetest and most cherished of them all.  
Because in a world where time is ever fleeting and the best moments are here and gone much too fast, I have this: A beautiful little boy that needs me just a little bit longer. Though sometimes I find myself hoping Jax reaches a new milestone just when a “typical” child would, or maybe even sooner, I am more at peace with his abilities (or lack of) with every new day. I have been given the beautiful gift of a few extra special moments to relish, and with his first half-birthday creeping up, oh how thankful I have become for all of his small differences.


  1. I don't know why your therapist told you that but it's just...wrong. On every level.

    My typically developing boy took way longer to master some skills that my daughter with Down syndrome seemed to be born with. And sure, vice versa. But it's not always a struggle for our kids! Any of them.

    I totally agree that comparison is the short path to unhappiness, but honestly, it goes that way for everything. Here's a post (have to dig it up now!) I wrote about this stuff:

    xo m

    1. thank you for sharing that! i completely agree. but i also think it depends on where you are with your child. for some parent's, the diagnosis of down syndrome is very hard to accept, for others, it's a cake walk.

      i think it depends on which side of the fence youre on. some parents will care more about reaching milestones, some will care more about current abilities. and i think at some point those two things mesh, for those parents having a hard time with the diagnosis, at least. it just all depends on when that happens.

      it takes a lot, in some cases, to get past those standards set by society on what a baby should do. they roll over at four months, walk by a year, etc. you expect that, because society tells you it's normal. anything other than that is different and gawked at.

      i think comparing is natural (you had compared your daughter in that post: how much smaller she is, the way the other girl was communicating better). but i think the key is comapring, noticing there are differences, and finding a sense of pride them (as you did). if everyone or everything in the world was the same, what a boring life this would be.

      and i know this post of mine focuses on differences, but i feel it was my way of saying, "i'm learning here. i was on that grief stricken and terrified side of the fence at first, but i'm learning and i'm proud of my son and whatever he does regardless of when he does it."

      also, like i said in the email, my therapist is really not awful! i just ask a lot of questions. and i'm glad we finally found each other on facebook, haha.