Monday, April 18, 2011

Daddy's Charm

Daddy says jump, Fiona says how high? She is like butter in his hands and things that I have been trying to get her to do for weeks, she does for daddy no problem.

We have really started working with our OT, Carol, and we love her. She is so hands on, takes every little worry I have with the up-most concern, and she just adores Fiona. Feeding has always been our biggest issue. I kinda got cocky and chalked it up to the heart defect, but now that that's fixed, we are on to new feeding struggles. Sensory and poor muscle control struggles. As far as nutrition, its totally and completely acceptable for Fiona to be sustaining on breast milk alone her whole first year of life. But we want to her to explore tastes, textures and learn that mealtime is an enjoyable family event early on, before stubbornness and habits set in.

So while I have been struggling for weeks to get Fiona to swallow at least one mouthful of mushed apples, my husband grabs a bag of Happy Bellies yogurt melts (my favorite organic baby food brand, can be found at Target), waves it in font of Fiona's eyes, and wa-la, she opens her mouth and happily lets it dissolve on her tongue. What?! I had exhausted an entire bag of these things in attempt for her to keep just one in her mouth, and Dad gets it first try. Both baby and daddy were smiling from ear to ear as she continued to eat one after another. And then Carol came, and the boys joined in, and we talked about the what to do next as we monitored the boys taking turns placing yogurt melts in Fo-na's mouth. They are her biggest cheerleaders.

Lately, I have been browsing the many Down syndrome blogs. My whole blogging journey started when I was introduced to a little (ok, with over 12,000 followers, its not so little) blog called Enjoying the Small Things. There are millions of mom blogs out there, but the Down syndrome ones I feel particularly drawn to. As I read through each one, I feel right at home, with the mutual understanding I share with these moms. And the titles always remind me that God blessed each of us in a special way- titles such as A Different Kind of Perfect... The Good Life...  Our Unexpected Journey...  Unforeseen Gifts...  Chromosomally Enhanced... No Greater Gift... Little Wonders. The list goes on and on. Really, reading the words of these mothers is not all that different then reading any other mom blog. Except, for the therapy and medical jargon, these kid's stories are the same as any other American/Canadian/etc kid. But each one has had their world shaken to the core with the learning of that 47th chromosome. Each one had to grieve at one point and learn to walk in new shoes and were forced to be stronger women. They didn't just become moms, but they became advocates. We have a special community, a special understanding and have come to know the beauty that is down the road less traveled.

Our community extends farther then just Down syndrome- in more ways then one. Down syndrome often comes with a multitude of other issues, syndromes and diseases. Our community overflows into the special needs community, and that's why I treasure the friendship I found in our neighbor. Her daughter doesn't have the almond eyes, protruding tongue or epicanthal fold. No pre-determined biological make-up mix-up placed her in our community, but rather a very scary, in utero stroke forever changed little Piper. She is a beautiful, strong little almost-two-year-old who has one amazing momma. A momma who thought the challenge with Piper was going to be that she was just 18 months apart from her older daughter. A momma who not only took on that responsibility with more grace then she thought possible, but also was the biggest fighter for Pipers  recovery and progress. And that momma has been nominated for the News Press-SWFL Parenting Magazine's Mother of the Year. I am honored to vote for a mom who is the queen of juggling it all- work, kids, doctors, therapy, volunteer work, playgroups... she deserves this award. Please help bring a smile to her face by nominating her HERE and check out her own blog to learn more about her sweet girls and the good things she has accomplished this year at The Naptime Experiment. Megan, I will be voting every chance I get!


  1. Thank you Shannon! You are Mother of the Year in my eyes! You are an inspiration to me and so many other Moms, not because of the gifts you were given, but because of the way you make their lives so beautiful. They are three lucky babes, for sure...

  2. Shannon, I see that you've recently started following my blog. It's nice to "meet" you through yours!
    If you haven't already, please look over my "Oral Motor, Jaw Strength" posts (the top of the "Reader's Favorites"). You're doing great with getting in Fiona's mouth (WTG w/breastmilk!), but she needs to start a new motor pattern-- start working with jaw strength and an up and down movement rather than a suckling movement. I have so many more oral motor posts that I haven't yet written, but if you can buy the Talktools DVD, "As a Parent..." it will help you tremendously. It's only $15, and with Carol's help, you'll have Fiona chewing and swallowing like nobody's business!

    She's so adorable!

  3. I am not sure if Fiona could be more cute!! so excited to find your blog! eating can be such a LONG process with our kiddos! it is so funny how kiddos with eat with no problems when it is there favorite food! Maddie has never turned down chocolate and peanut butter!! blogging has been my personal survival tool! it has saved my sanity...smiles


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