Oct 24, 2013

Anna Update

I haven't posted about my sweet baby girl in a while, so I thought I'd share a little Anna update.


If you've been reading the blog for a while, you know that Anna has Gorlin Syndrome, which is a rare genetic disease in which her cells don't know when to stop making more cells. She's had basal cell cancer spots removed and more are found each time we visit her dermatologist (11 last visit). No fun. Her condition has also affected her mental and physical development in different ways. And just this year we were told she has Sensory Processing Disorder; she seeks out sensations that she has trouble feeling on her own (and that's a whole 'nother post). 

So, those are her medical issues in a nutshell. We're going to a new doctor in Memphis next week to look into having her cancer spots removed with a laser instead of the 'burn-and-scrape' method, which is just about as delightful as it sounds (she's still scared of the doc who did those procedures last time).
Anyway, as her mama, I've having some issues disciplining my sweet girl, let's just be honest. We're firm and loving in our approach, but I'm just never sure how much she understands. I doubt myself all the time. And then the guilt rushes in.

Sigh...
I'm not spending as much time in God's Word as I'd like, but my prayer life has certainly increased. Instead of big chunks of time like I use to have with the Lord, it's bits here and bits there - but I'll take any time with Him that I can get!
Anna was recently asked to be one of the poster children (literally) for her condition's national support group, The Network. They'll be doing a little story about our family and Anna's medical issues. It's a strange feeling to have your little girl be one of the 'new faces' of Gorlin Syndrome. Hmmm... But, The Network has been a big support to us, especially in the days right after her diagnosis, so we want to do anything we can to help with their annual campaign

Anna also modeled in a charity fashion show last week to raise money for her dance program, which provides free dance classes to children (and adults) with special needs. It is simply incredible. That's the finale, in the picture above, where they all signed the lyrics to John Lennon's song Imagine. As a Christian, I wasn't fond of the song choice, but it was certainly a tear-jerker.
This event was a little hard for me. Before Anna, I didn't know any people with special needs. Honestly, I've always shied away from people with disabilities because they just make my heart hurt. I have a very tender heart and cry at just about everything. Seeing someone 'not like me' makes me uncomfortable. (I know I'm sounding like a horrible human being right now.) However, watching the fashion show and seeing children and adults with all sorts of unique challenges (while crying like a baby in the second row), and knowing that my daughter is part of this special family, was good for me to see. Therapeutic and difficult, but still good. This is my life. This is what God's plan for my life includes, and I am trusting God. 

And I am thanking God.

Anna is wonderful and precious, and she is a gift. A blessing. I couldn't imagine my family without her adorable smile and sweet spirit. She brings such joy to my life!


Here are some of the awesome pictures that Bookout Studios made for The Network's campaign. The people in this studio were out-of-their-way supportive and welcoming, and they even gifted all the pictures! How generous!


Anna is still loving her school and loves to sing and dance; she's especially excited about seeing The Nutcracker ballet this Christmas. Thank you for your continued prayers and support. And thank you for letting me share my thoughts with you. Since she's not at home with me during the day, I feel like she gets left out of the stories I share here; I like to do a post just about her everyone once in a while. So, that's my little Anna update. 
He made everything beautiful.
~ Ecclesiastes 3:11
post signature

2 comments:

  1. Precious!!! LOVE you and your sweet family so much!!!

    ReplyDelete
  2. What a sweet, heartfelt update. I appreciate your honesty! I grew up with an uncle who is deaf and an uncle with cerebral palsy...and it's still hard for me sometimes to know how to interact with those who have disabilities...because my uncles don't seem disabled to me! Several of my friends have adopted special needs children and it has really opened my eyes and heart to those who have disabilities. What a blessing it has also been for my children...because some of their closest friends are these children who don't look exactly like other kids. Your baby girls will be such a blessing to so many. I have never met them or you in person, but I can see through your blog posts what a special mom you are and how much you pour into their lives...especially the love of the Lord. God bless! PS...what an AWESOME program for those who have special needs!!

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...