Give What They Cannot - Part 3 of 3

Imagine for a moment having your hands tied in front of you, your feet tied at the ankles and your mouth covered with duct tape. It's the stuff of horror movies. No? Yet this is a picture of how girls with Rett Syndrome must feel. Or maybe they feel as though they are fighting their way through a thick viscous substance that makes every movement a battle to push forward, leaving them disoriented and cloudy.  Girls ,and a handful of boys, with an inability to move their limbs in a purposeful way. Loss of hand function and loss of speech. Beautiful words, sentiments, feelings trapped in a mouth that will not let them out. Feeling happy? No words. Feeling sad? No words. Feeling hurt, angry, exhausted? No words.  Just your eyes.  And wow, do those eyes pack a punch....

 But you - the readers of this blog.  You most likely have words. You have fingers that work and legs that move as you will. What can you do for those less blessed? 

Tell others about Rett Syndrome. Educate people about other disabilities you have encountered.  Use your mouth with its ability to articulate complicated sounds.  String those sounds into words then make sentences that go on forever as you educate and impassion others.  People need to know so when they encounter a "Luisa" they understand that despite her physical limitations she hears, she understands, she desires to communicate.  Knowledge leads undiagnosed families to a place of help and community.  People need to know because their eyes should not always look away.  Did you know that Rett Syndrome is the leading cause of severe disability in girls?  (www.girlpower2cure.com).  Yet many of us have never heard of it.  Maybe if we spread enough awareness more people will not look away in fear and discomfort at the girl in a wheelchair with hands that never seem to stop their complicated dance. 

Share this post and this post and this post with one simple click because you can look at a button and press it without having to will your fingers in a slow, laborsome process. Share www.rettsyndrome.org.  Share so people will understand.

Walk with your beautiful, functioning legs in a Strollathon that supports the International Rett Syndrome Foundation (IRSF). If you earn a wage will you support those girls who cannot, by giving to the Strollathon? If they could give to their own cure they would.  Want to know why it's called a Strollathon?  Because many of our girls cannot walk.  So mommas and daddies and grandparents will stroll behind them, pushing their wheelchairs or strollers.  We will dress them up in purple and bows and we will feel proud and happy because we love them so.  Will you come along too?  Luisa and I are joining TEAM LUISA at the Strollathon on September 27th in San Antonio TX.  Wanna stroll with us?  Please come!  Wanna see Luisa?  Please come!  She will smile at you but she will not say, "Hi," with anything but her bright eyes.  They are enough though.  You will see.... Donate to the Strollathon here.

Here's another idea:  buy lemonade and drink it with your mouth that knows how to swallow and not drool. Most likely you are able to sip from a straw.  Our lemonade stand will have paper striped vintage straws and Luisa knows how to drink from one!!!  Come see her perform this feat, one of many I used to take for granted.  Vincent and Sophia will be serving lemonade in honor of their sister on Saturday September 20th from 10- 2.  UPS is donating flyers and yard signs and banners.  Zoes will provide Limeade and Publix and Piggly Wiggly, lemonade.  Party Time of Vestavia is donating a BOUNCY HOUSE!!!! Their generosity touches my heart.  Come to our stand and bounce and drink lemonade and make a difference.   100% of proceeds go to the International Rett Syndrome Foundation.  Busy that day but still want to support our lemonade stand?  Click here and donate online.

Live in Birmingham and want a fun night out?  Join us at the Raise the Roof for Rett Gala benefiting the Suki Foundation on November 1st at 6 pm.  The Suki Foundation supports local research through Children's of Alabama.  Read more about the event and buy tickets here.  Remember the wonderful Rett Clinic I've been telling you about here in Birmingham?  Well the Suki foundation works to make sure it stays here and for that I am most grateful.

Those who knew me "before" diagnosis will find this post rather odd.  I've never been one to solicit funds or support of any kind.  Honestly I'm quite uncomfortable asking people for things.  But I'm on fire for Rett Syndrome research.  Why?  Because it is something I can DO!!  When you walk into a doctor's office, receive a devastating diagnosis, and then are told, "There are a few more tests we will need to run - an electrocardiogram, an EEG every year, blood work.  These will help us manage any serious symptoms."  But her silence?  Her inability to walk?  Her difficulty in kissing her mother without biting?  Her inability to hold on to a swing or ride-on tricycle?  Her inability to grow brain mass the way her typical peers do?  Her challenges in playing with her siblings?  Well there's nothing we can do about that.  So go home and manage a few of the symptoms as best you can.  And envision wheelchairs, and computers that will speak for her and diapers and a frustrated little girl.  Envision these things with no cure.  NO THANK YOU.  I will not.  I will pray.  I will walk.  I will buy lemonade for the same price or more than the latte I buy everyday.  I will click on DONATE because I know there are scientists working hard to find the cure.  And I know they are making advances.  I want to see her walk and talk and use her hands.  Raising funds for research is something I can DO, with God's grace and favor, to make this happen.

And if lemonade and Strollathons are not your thing?  Will you pray for these girls and the scientists in labs 9-5 looking at genes and mice and wringing hands?  It's funny.  When I pray for the scientists I envision them in my head.  I pray for the scientists who make a breakthrough.  I pray they will be believers in Jesus Christ and will know that it is His hand that has given favor in the lab. 

How about special needs children who do not have Rett Syndrome?  Do you know any?  "The least of these" are everywhere.  Down Syndrome.  Rare genetic conditions.  Undiagnosed.  Epilepsy.  Cerebral Palsy.  Autism.  Maybe you could bless a mother's heart and get down on the level of that special needs child and look in their eyes and say hello?  Will you say their name and smile and tell the mother something you see in their child?  Not she looks pretty or her hair is so nice.  But instead, she is smiling!  Wow, I can see her personality!  She is God's little one.  I am so glad I know her.  I wonder what she is thinking?  I remember when she was born.  You are uncomfortable.  We get it but we need you to see them.  We are afraid our children will be ignored and unseen because of your fear, uncertainty, and sadness at seeing their brokenness.  See a wheelchair in your neighborhood?  Bring a meal.  Help with the other children.  I can speak from personal experience, this is a blessing unable to be measured.  This is God's hands and feet.  This is His kingdom on earth.

This last post was a post of doing.  Of walking, drinking lemonade, donating, praying, speaking, sharing, DOING.  Luisa cannot DO many things but I can.  I will.  Join me?

These parents and families express it better than I ever will.