Halloween--a realization of a life's dream

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 last year.  If you don't know what I'm talking about, here is the clip of the dazzling dancing the Sharks did--especially the left one. 




And here is Evie's interpretation:


Mommy is done making Evie dress in silly costumes for this year.  Until next year, my friends!

Please be her friend. Love, Evie's Mommy

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 month. But one day, I hope that news articles about people including those with Down Syndrome won't be a novelty, but a normal occurrence.  I don't want Evie to be a mascot or pet project, but just part of the "gang."  (But maybe not a motorcycle gang, please, Evie!)


Everyone is so supportive of us and so loving to Evie right now.  Thank you to our friends and family who have 100% accepted Evie, wanted to know more about her medical needs, and asked how they can support us. Your love has been so important to us.

There is a little 5 year old girl who lives down the hallway in our building.  She has taken a liking to Evie, and drops little cards and gifts at our doorstep.  This warms my heart so much!  I don't worry as much about the adults as I do about her peers.  I hope that Evie can keep up with the other kids, and I hope that they want her around and seek her out. It will just about break my heart to hear for the first time another parent tell their child that they should include Evie, but I will also want to hug that parent as well (and need a hug myself). Maybe I'm being a little paranoid. I think every parent wants their child to have friends. But having been a kid myself, I know how kids can ostracize other kids because they are different.

I think many have seen this video by now, but this 12 year old boy wrote a rap song about his sister with Down Syndrome.  He must have seen her hurt often enough to inspire this song.  We need more kids like this in this world!


Having said all this, I wouldn't trade this for anything. Evie is the best thing that ever happened to me, besides marrying my husband.



Evie on the Catwalk


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 different for a kid with a tube coming out of her stomach.

When Evie was in the NICU, she wore the snap front sleepers.  This was fine because Evie couldn't roll over yet or pull at her many cords.   She had an oxygen tube and an NG tube, which is a feeding tube through her nose down her throat, so there was nothing attached to her tummy.  When she got the G-tube through her tummy though, this changed Mommy's whole wardrobe scheme.

She actually had a G-tube at this point, but just had to show off my tiny Evie in one of my favorite snap front sleepers!
At 5 weeks old, Evie got a G-tube, which is a feeding tube connected through a port that was surgically inserted into her stomach.  As you can see, the G-tube comes out on the side of her, so if she's wearing a zippered sleeper, there's no opening for the tube to come out of her clothes. I wanted her to wear this penguin sleeper so badly, that I put it on anyway.

Snoozing away in the NICU

I will admit right away that I am a Carter's store fanatic.  I always know what new prints are out for baby clothes at Carter's.  And the sad thing is that Evie cannot wear many of them.

For example, the cutest little penguin sleeper is at Carter's.
1-Piece Fleece PJs
But Evie can't wear this because there's no opening for her G-tube out to the side unless I cut a hole in the sleeper.  Sad face.  Luckily last winter we had nice snap front sleepers!

http://demandware.edgesuite.net/sits_pod38/dw/image/v2/AAMK_PRD/on/demandware.static/-/Sites-carters_master_catalog/default/dwe334330a/hi-res/118G019_Purple.jpg?sw=2000&sh=2000
Another non-tubie friendly sleeper with a penguin on it. Mommy is sad Evie can't wear this one.
If you haven't noticed yet, I love penguins.

All summer, Evie mostly wore rompers from Carter's.  I was ecstatic to see that they had these, and bought as many as I could.

http://demandware.edgesuite.net/sits_pod38/dw/image/v2/AAMK_PRD/on/demandware.static/-/Sites-carters_master_catalog/default/dw6b422d48/hi-res/118G267_Purple.jpg?sw=2000&sh=2000
These snap front rompers were perfect for the summer, since the G-tube could come down the side of her leg.   Onesies were okay, but I had to hike up the side of the onesie to access the G-tube port (and give Evie a wedgie for a second), so they weren't as nice as the rompers.

Here is a onesie that I loved so much, that I got a Tummy Tunnel to try to be able to use onesies, long pants, and a G-tube.  I now regret doing it that way because it left a draft, but at least it worked when I needed access to the G-tube port.

Dresses work too, but a girl doesn't need to get all fancied up every day!

Give me a "V"!
I took it for granted that Carter's would always have snap front clothes.  That is apparently not true this season, and it's still too cold for the fleece snap front footed sleepers.  And I can't find any snap front cotton sleepers without the footed part!

Now that fall is here, we can't live in rompers anymore. So it's time for long pants!  This is a new thing for Evie and her mommy, since she wore sleepers last winter.  We were used to threading the G-tube down the leg of her romper, but it's not as comfortable for her if we thread the whole tube down a long pant leg.  So Mommy's answer to this is tunics!  Tunics and long pants!  Tunics are better than regular shirts because the length of the tunic covers up her g-tube button a little more.

Every girl should have socks with pompoms on them.


I look healthy BECAUSE I'm a tubie!

For sleeping, Evie is transitioning into big girl pajamas.  By big girl pajamas, I mean not sleepers, and actually shirt and pant pajamas.  We put her in shirt and pant pajamas, and this leaves great access for the g-tube, and then we put the Zipadee Zip sleep sack on, and she's off to dream land! 

For the full fashion story about Evie, we can't leave out swimsuits. Tubies can wear swimsuits too! Here Evie is sporting a tankini with a light beach coverup, all with a salute to her love for the United States of America.

Thanks for reading about Miss Evie on the catwalk!  She will take modeling gigs at a later date so she and Mommy can travel around the world. 

Thanks for reading, my fantastic fans!
Happy Down Syndrome Awareness Month!  We hope you are learning from our blog!

Love, Evie and her mommy


Joining a new "family"

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 the little ones had Down Syndrome, each one of them was so unique.


Our friend JJ was Evie's tubie buddy--they G-tubed and J-tubed together during the party. They are the same age--only 2 weeks apart! We intend to take pics of them at each event when we see each other so we can laugh at how far they've come in 20 years. 

Whatcha doin', JJ?

I can't wait to see Evie run around and play with the other kids!  Keep growing, Evie!  (But not TOO fast...Mommy loves cuddling with you so much!)


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