Evie the Extraordinary and Her Mommy: The Journey As We Go

Guys. I had a huge breakthrough today. I actually did something the feeding therapist told us to do at home.  She had suggested putting food on Evie's tray to help her feel comfortable with finger foods around her, but to actually remember to do that and implement it is another story (along with all the other therapists' suggestions for various parts of her body). This Labor Day weekend, I found myself with time to focus on her eating with the intent of being creative.  We started lunch time with a canister of star puffs. I told her I was putting 10 stars on her tray, and because she loves counting, she actually watched me do it. Then we proceeded to eat her pureed mac and cheese while singing the Hokey Pokey.  (If you want to know alternative body parts to sing to entertain yourself during the 20th verse, I'm happy to share.)   It doesn't sound like much, but Evie didn't cry or throw her star puffs, and was willing to touch them and put them back in the canister....

A little overdue, but Evie is 2! I don't know where the time went. I have to say that I much prefer Year 2 over Year 1. Year 1 was filled with anxiety about her health, oxygen tanks and feeding tubes, and going to numerous doctors' appointments. Year 2 was more about watching her grow in so many ways, and getting to enjoy her more. I swore I wasn't going to do anything for her birthday after last year's wedding birthday party, but Uno's did a great fundraiser that weekend for the Massachusetts Down Syndrome Congress, and donated 20% of the bill to the MDSC.  So we invited our friends to eat there with us! As she turns 2, here are some FAQ's about Evie that you may have:  Is Evie walking yet? No. But we just picked up Evie's ankle-foot orthotics, which we hope to ease her into as soon as I can get her bigger shoes to accommodate them. New purple sparkly hippo shoes are on their way! Hopefully with a more stable ankle support, she will feel more ...

I remember watching a TV show many years ago where a woman bought a Saturn car and suddenly found herself as part of a happy community of Saturn owners.   It was very cheesy, but the woman felt like she had found a new family.  Just because she drove a Saturn. Evie and Mommy went to our first New Families Event by the Massachusetts Down Syndrome Congress in Burlington.  And kind of like joining the Saturn family, but MUCH more genuine and life-changing, I feel like because Evie has that extra chromosome, we have found a new family. This morning, Evie and I walked into a room full of the cutest babies/toddlers, their amazing siblings, their parents, and grandparents.  I ordinarily don't love huge rooms of people I don't know, but I immediately felt at home.  We all had a connection with Down Syndrome, and it was there in the room, but more importantly, we were just enjoying our kids and sharing our stories with one another.  And even though all of t...