Our Beautiful Butterflies - Take Three!February 03, 2014
In Lily's first year of life, I had an idea. An idea to show the world what Turner Syndrome looks like. To date, it, and it's sister post from last year remain my most popular posts ever. A fact that I'm both amazed and proud of. In fact, this year's addition includes a couple of girls whose mothers found that post, and it gave them hope and encouragement. Turner Syndrome is not some horrible drawing from a medical text book, it is these amazing, beautiful, capable girls! And that, is mission accomplished!
February is Turner Syndrome awareness month, and Lily and I wanted to do something to help spread awareness. Awareness of what Turner Syndrome is. Awareness to the just diagnosed, that this does not have to be a bad thing, and hope to the expecting mother, carrying a precious baby with Turner Syndrome, that this will be a journey that is worth any hardship you may face.
The butterfly is the Turner Syndrome symbol. The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for these girls. I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls! Over the past 2 years I have come to know many of these girls's mothers, and some I have formed life-long friendships with. And again, putting this post together this year, I have been moved to tears many times. 2 years ago, I learned that Lily and I are not alone, this year I know we have an entire support system to lift us up whenever and wherever we need it. These people are our family!
My hope is that you'll share this post as much as possible. Please post it to your facebook, tweet a link to it, email it to your family, friends, your local media. Alone I'm just a single blogger, with a beautiful daughter who happens to have Turner Syndrome. Alone, there isn't a lot I can do, but together we can make a difference!
So without further explanation here are our beautiful butterflies - 45 chromosome princesses of all ages, they are many and varied, they are miracles, our one percents!
Emma T - 2-1/2
She is now a 2.5 year old active sweet girl. She adores her family and especially her sister Erika (6 years old). She is amazing and always loves everyone and everything. She is always so happy and there is no one that does not love Emma after having met her.
Madi - 4-1/2
Sajda - 3 (almost!)
Ivy - 3-1/2
Maizy - 19 months
Mikaylee - 2
Isabella - 3
Isabella's mom writes, "At 47 years old, all my children were grown at 15, 18 and 21. I was returning to work after 20 years at home with them. But God had other plans for me. The day before I was to start my new job, I had a positive pregnancy test. I had always wanted more children, but I confessed I thought, "Now, God?" At my 20 weeks scan we found that we were having a girl and she had a cystic hygroma that was very large. I refused an amniocentesis because I didn't want to endanger her any further.The perinatologist suggested an abortion."
Adele Mikayla - 6 months
Tiegan Rae - 3
Sienna Rain - 7
Sienna is 7 years old and in the 2nd grade. She was diagnosed at 4 years old with Mosaic TS and started GH at 5 years old. She has grown over 7 inches and gained around 9 pounds since starting the GH. She is an athletic little girl who got a new pony this year! She has been riding since she was 5, and this year we moved to a house where we could keep our horses! Sienna goes to riding lessons at least once a week, is in swimming lessons a few times a year and was part of a running club at school this year that ended the season with a 1.25 mile run! She has a horseshoe kidney, has had tubes in ears 4 times now, her adenoids and tonsils out, and wears glasses. She tells her mom that she is going to grow up to be a horse worker and asked her if she could go to college to learn about horses!