I.am.crazy. But I just have to do this.
In just 13 days I am going to run 13 miles at the Disney Princess Half Marathon for Sarah's 13 years with Rett Syndrome and try to raise $13,000 doing it.
Thirteen is such an unlucky number for most people. Sarah's battle with Rett Syndrome is definitely the epitome of unlucky.
But she is here. She is a beautiful, inspiring young lady who made it to 13.
You see, when she was first diagnosed with Rett Syndrome, they told us she would not live past 12. That was outdated/poor information I soon learned, but that number 12 really stuck in my head. It haunted me.
I could not bring myself to start fundraising for this race until she had successfully gotten past that dreaded 12.
So, here we are. PAST 12.
She has been struggling with Rett for 13 years. So, for every year she has had to cry herself to sleep, scream for help with no one to understand her, be tortured by constantly wringing hands, be spoon-fed by her mother and changed by strangers, I am running a mile.
It sounds really simple when I reread my words, but I'm a little scared. I have not been able to run for a year since tearing my left LCL, so this is going to hurt.
But it can't hurt as much as she does, so here I go.
Please donate to celebrate Sarah's 13th Birthday. Add a note for which mile you want to sponsor and I will hold up a sign with your name on it at that mile! I need you on this journey with me.
So, on your mark - get set - gooooooooooo. Help me succeed in this crazy goal over the next 13 days!!
All proceeds benefit our nonprofit, Girl Power 2 Cure. All donations are tax-deductible.
Here's the link to donate! http://disney.teamgp2c.org/goto/ingrid
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YEAR ONE: Sarah loved Mardi Gras beads. We tied them to her car seat and she would play with them and giggle. She started to commando crawl. The first 9 months of her life was pretty typical - but we spent the last few months of it in a panic. She started to regress and we started our journey to find her diagnosis. This first year was a mix of ups and downs and lots of confusion. Peter was in residency. Pierce was 3. We lived in Mississippi on an Air Force Base. We were very alone. We had to really dig deep. Thank you to our Keesler AFB friends who helped us through these days.
YEAR TWO: No sleep. We had no sleep. We still had no diagnosis, but started in on intensive therapy. I remember flying to Detroit, 7 months pregnant with Gretchen, with Sarah to do a 2-week intensive suit therapy session. 6 hours/day. Lots of tears. Lots of screaming. Both Sarah and me. She showed us the fighter inside. That's when I knew we could do this. It would not be easy, but we would fight. Together.
YEAR THREE - "A word!"
Still no diagnosis. Still regressing. Lots of screaming in pain, especially at night. So many unknowns. We knew she was "in there" but she couldn't even hold her own head up very well by now. Gretchen was born. And one day Gretchen was crying and Sarah reached out and patted her head and said, "Baby." One of the only 6 words we ever heard her say, but a word!
YEAR FOUR: "No longer alone."
This year was key for Sarah and our whole family. Yes, we all had each other. Yes, we had friends and family. But what about the "outside world?" A few initial outings always ended in tears. She hated even riding in the car. How will she connect? Will anyone help her? Will anyone else believe in her? That answer came with a resounding YES when we were lucky enough to get Sarah placed in Marie Stamm's classroom while living in Illinois when she turned 3. The love she had for all these severely challenged children still brings me to tears. It was my first introduction to this whole "other world" of special needs - the equipment, the adaptations, the possibilities, the community. This year was all about bringing Sarah out into the world and we are so grateful we did.
