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

A very happy Thanksgiving from Evie!  We are so thankful for this little turkey. She has brought us so much joy!  We are also thankful for the friends and family who have surrounded us with love during this very adventurous year!

What do you do when your daughter's g-tube button pops out of her stomach while you're in the middle of a busy restaurant? In the middle of S&S Restaurant, I pulled Evie out of her stroller and didn't realize the G-tube was threaded through the stroller strap.  I looked down at what was pulling on her, and saw the whole G-tube button sitting there in her stroller. and the hole to her stomach peeking out at me.  Someone without experience with G-tubes might expect that blood and guts would come pouring out, but the only thing that would pour out would be milk or whatever food she had in there. I got scared to death of this happening when we first left the hospital. They just told us we had to go to the ER if her button popped out of her stomach, and that we had 2 hours to get there before the hole closed and she had to have surgery again to get another one on there.  Thank GOD that The GI nurse at Boston Childrens taught me how to change it out. On a d...

Evie's mommy had a little too much fun preparing for Halloween. For so long, I've dreamed of having a child of my own to dress up in a cute costume for Halloween.  Then Evie came. And I got THREE costumes. This is today's final costume--the one that Evie tolerated most.  I think it turned out well, since I like penguins so much. She used to have a long sleeve white shirt that went with the outfit instead of a polka dot shirt, but a poop explosion on a red blanket took care of that, once the blanket went in the wash and turned all of our laundry pink.  But I had other aspirations as well.  For a cute New England girl, how much did it make sense that she would be a lobster??  But as soon as I put this on, she gave me a look like when will this be over, Mommy.  The second I took off the lobster hat, she was all smiles.  My attempt at brilliance was to make her the dancing left shark from Katy Perry's Super Bowl performance la...

I've had this post ready for awhile now, but haven't published it because I thought it was a little bit of a downer. But I think it's important to bring up, because if Evie didn't have special needs, I probably wouldn't have paid as much attention to this. The other day, I read this article by a mom (and Facebook friend) who has an older child with Down Syndrome.  She has already traveled much of the road that we are just embarking on. When Your Child With Special Needs Doesn't Receive Any Invitations. By Sharon Randall As I read this article, I grew more and more sad. Oh, please, please--don't let this happen to Evie!  I hurt for her.  I can't shield her from peers who won't know any better and perhaps see something different about her when she's older.  All I can do is hope and pray that she makes friends who love her and look out for her. It's so great to see all the neat blogs and articles in honor of Down Syndrome Awareness m...

A number of friends have asked me if I have heard about Madeline Stuart, the first model who happens to have Down Syndrome.  I think she's great, and I think her mom must be amazing as well, to have encouraged her daughter to go after being a model, even when this hadn't been done before. There's also Gigi, another up and coming model who wants to show the world that people with Down Syndrome should not be limited by people's assumptions.  I'm so inspired by these young women. Evie is Mommy's model!  I have dreamed of dressing up a little daughter for years, and now I get to. No, I am too young to watch the Kardashians. But thanks for asking.  I can't tell you how excited I am about Halloween.  There are too many cute possibilities for costumes.  I have looked forward to dressing up Evie for Halloween since I knew we were pregnant with her! But today's post is about clothes.  Clothes for kids with feeding tubes. Things can be differ...

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...

It might sound strange, but I was looking forward to this day. This was Evie's first visit to the Down Syndrome Clinic at Boston Childrens . When we found out about Evie's extra chromosome at 10 weeks prenatally , we learned quickly that there was a Down Syndrome Clinic at Boston Childrens (there's also one at Mass General).  We met with Dr. Emily Davidson, the director of the clinic, and were very much reassured by our visit.  We checked in at 8:30 am and I was so happy to see other kids there playing in the waiting room. Look, Evie, I wanted to shout, there are other kids like you! Each one so unique!  I felt a certain kinship with everyone there even though we didn't say much. Parents just smiled at each other. Angela, the longtime coordinator for the clinic, orchestrated where each family went. She has a son with Down Syndrome, and he just started college this year!  The first stop was Height and Weight. Evie was 26" and weighed 16 lbs and 7...