Blessings

Yesterday was the 3rd Annual Butterfly Walk for Turner's Syndrome.

I knew not what to expect when I invited friends to join my family and I in this walk, and in supporting the future TS clinic of Denver, opening in April 2015 at Children's hospital.

I certainly did not expect what did happen.

The Colorado chapter of the Turner's Syndrome Society of the United States hoped to raise $25,000 to go towards said clinic, which would later be put back towards the girls and women with Turner's Syndrome in our state. They raised over $40,000 when all was said and done.

I had hoped to raise $100 in my efforts. I think way too small, and I underestimated the kindness, support and generosity of all of you. Grossly. Team Nora collectively raised over $1,015.

Not only did we raise a ridiculously awesome amount of money to support this cool clinic coming our way, we also represented at the walk! My mom created and brought us some beautiful pink shirts to sport for the day, proudly displaying Ms. Nora's beloved name, and we looked like a big pink mob of love and joy (not your typical mob, but I'll take it). So many more people than I anticipated joined us in the walk and celebrated Nora with us. We couldn't be more grateful.

You're all incredible. And Kevin and I are so proud and honored to call you our friends and family. We are eternally grateful for your support, compassion, grace, kindness, joy, jokes, hugs and love. Truly. A bajillion thanks to you!

Here are some images from the fun we had:

Oakley Grace and I enjoying the walk.

Cousin Presley and Auntie Whitney

Team Nora! Count 'em: 29 in all!!! Amazing!

Brenna and Ms. Presley

Dan, Kyle and Pat

Sean, Brianne, Wes and Maree

Presley is too cute not to take a billion pictures of.

These are the Butterflies of the walk. Butterflies are the girls that have Turner's Syndrome- those we walked for and celebrated yesterday!

The walk was so good for us. We met doctors and families with daughters that have TS and we smiled in the sunshine! We noted the many losses to Turner's and we learned that a memorial for those girls is going to be put up at the park to honor them! How lovely! We met others who were diagnosed in utero, and we learned that growth hormone shots aren't really a small matter- 6 days a week of shots is something that I am grateful to be forewarned about! Every part of it was necessary and helpful. 

A little more about this clinic that we learned: The clinic will open this April, hopefully. It is meant to be "a one stop shop" for girls and women (Yes, women too! Not just kids!) with TS. Right now, there are MANY appointments to the doctor for these girls, each one with a different doctor, each giving their own recommendations, each looking at different parts of the body. The hope is that the stress, confusion and time commitment is eliminated with the new clinic. In one day girls will meet with all the necessary doctors (psychologist, neurologist, endocrinologist, etc.) to get one set of recommendations to take away. It should be succinct, helpful and supportive! Sounds pretty cool to me, and manageable!

The same doctor that told me all the great things about the clinic asked me this, "How are you feeling?"

Because I am shameless and not about to waste my time with things I'm not really concerned with (yet), I got right to the point. "I feel fine. To be honest, Turner's just doesn't really scare me that much. We can take on all of these things. My pregnancy is going really well, too. But, I need to know if we're gonna make it to term. I wish there was some way to know that my hope isn't false. They say her heart is ok. Is that not enough?" 

Like I said, shameless. Since my last doctor never said, "Deidre, you can't ask doctors those kinds of questions," I just went right on doing it. I'm still that girl doctors hate to talk to.

BUT, I'm going to keep doing it, because guess what she said!?!?!?! She said, "No. That is good! That is enough. I would say that if her heart is ok, you're very likely going to have a little girl! Congratulations!"

It's as though Julie Andrews AND Garth Brooks combined have been singing sweet nothings to me for two days now. Not a thing in this world will bring me down after I've been told not ONCE, but TWICE that we have so much to be hopeful for!

Then, we watched the Broncos lose. But, we sure were proud of them for all that 4th quarter effort, eh?

Finally, Kevin and I had the best conversation to date regarding our little Nora. We talked about the support groups, the walk, Turner's in general, school for her, appointments, our fears and our hopes, the way we want to raise our little girl. We unanimously (thank goodness, since it's really only us two, and we're both so stubborn that debates sure are tricky!) decided that Turner's syndrome is simply something Nora has, not something that she is. We agreed that Nora's life wouldn't ever be about the things she doesn't have, such as an X chromosome, but rather about the things she will have. It's easy to be sad about the struggles we, mostly Nora, are going to face in the years to come. When thought about too much it feels overwhelming that she may not grow, may not hit puberty naturally, may never have children of her own, may have to endure tons of shots, appointments, struggles in school and potentially some ridicule from unknowing bystanders. But, isn't it so much more fun to imagine all the beautiful possibilities her life WILL have? There are far too many to list. But to start, she will have each and every one of you to love and support her, along with us, to cheer her on each and every step of the way. That is no measurable gift, and something that Kevin and I are forever grateful for.

Emma Watson said it best recently, "We should stop defining each other by what we are not, and start defining ourselves by who we are."Now, I know Emma speaks primarily to women's rights, but aren't women's rights also just human rights?  I am so happy that our little girl will enter a world where there are role models to speak such meaningful and powerful words of wisdom about being both human and a woman. Thank you, world! (Seriously though, let's not shoot back retorts of all the less-than-meaningful "role model" words of wisdom there are from our nation's celebrities!)

We are certainly counting our blessings today. Each little kick Ms. Nora gives me, though at times a little too strong, is counted as well! We are so incredibly blessed!