Thursday, July 21, 2011

A Little More Every Day

Five months ago Down syndrome seemed like the center of my universe.  And it occurred to me yesterday, that I hardly write about it anymore.  Marlon and I decided from day one that we would not let it run our lives, and that it would never be about what Kennedy couldn't do, but what she COULD do.  And let me tell you, she's sure showing us everything she is capable of.  Not only has she shown great progress in meeting her milestones so far, but two weeks after surgery she's continuing to do so well, despite the limitations. 

For many people it's like a contenst, to see whose baby starts doing what when and whose baby is bigger than whose.  In the long run, does it really matter who is sitting up first?  Was that on the last job application you completed?  No - Kennedy isn't rolling from back to front, and no, she's not sitting up.  But she is giving us kisses, blowing raspberries, sitting with support, playing with toys, eating pureed carrots, and most of all, she's making awesome progress in her recovery from open heart surgery.  All of this competition and the shocking remarks that she's not sitting yet make me want to say, "When did your baby do THAT?"  But I'm not that kind of person.  Sometimes I wish I was. 

Kennedy has to work a lot harder to do things that "typical" babies do with out even thinking about it.  That makes every thing she does even more of an accomplishment.  I don't take anything for granted.  Every milestone, no matter how small it is, is cause for celebration.  The fact that she grabbed onto the book while I was reading to her the other day is a big deal, while many people wouldn't think of the significance of that.  Each day we learn a little something new, or make progress with something we've been practicing.  My mom and I went shopping yesterday (imagine that) and scoured the aisles of Toys R Us for some new toys for Kennedy.  Keeping her busy since surgery has been a real challenge, so we're constantly trying to introduce new things until we can return to our normal activities.  Buying toys is a science for us.  I know that Kennedy won't necessarily use them for what they are intended at the age it indicates.  But for us, it's a matter of finding things that can help her develop certain skills.  We have to find new ways of using some of the toys, before we can really use them as intended.  And even some of the more straight forward toys, it takes patience and teaching for her to understand what to do with them.  Yesterday we taught her how to play the piano.  We also sat and played with bubbles.  Okay, okay.  I blew bubbles and she got excited to see them floating by, then popping when she poked it with her fingers.  We also made our second attempt with carrots yesterday.  She seems to like them more and more with each attempt.  And she's definitely starting to get the concept down.  After a few bites she was opening her mouth every time the spoon came towards her.  She ate half the container!  And followed it with 4 ounces of milk.  These are the moments I live for as a mom. 

Learning to play the piano!

Yummy mom!  More carrots. Now I'm going to do raspberries and get them in your face!


  1. She is beautiful and amazing. Imagine if the people that spent so much time comparing spent even 1/2 that time with their kids...that's what I do. It has been hard because my niece is 6 weeks younger than Hope and it is hard to see her doing so much more than Hope. It is also hard to see that she probably has 15 pounds on Hope makes me think too much about trying to fatten Hope up and that is just NOT going to matter how hard I try (and I really do try).

    I am glad you have a great outlook with will definitely help her. She is a wonderful little girl and you are great parents!

  2. I love your outlook and keep it up. Kennedy is doing so well. I can identify with the issue of weight and peoples comments/competition. In fact I blogged about it bitterly.

    I have heard strangers and friends comment on how our baby girl is so small for her age and sometimes it used to get to me.But with time, I have learned to celebrate the milestones and God has been gracious to us. She has been adding weight and we are so happy.

    Keep up with the good work. That girl is special and beautiful.

  3. Why the heck would someone think it'd odd for a 5 month old to not be sitting yet. That's not super common for a "typical" kid, let alone one who just had open heart surgery and was limited by her heart before that. (Regardless of whether there are other gross motor delays now or later). My girl is 6 months and not sitting but we, her pediatrician and her EI therapists are very impressed with her and feel she is largely on target. And no she's not often rolling back to front either.

    You have a great attitude about this. I think it's hard sometimes but I strive to be relaxed and appreciate what my girlie CAN do.