Butterfly Kisses....sent straight to Heaven!
Today, their neighbors held a "Butterfly Release" at a local park. It was a fundraiser as well as a chance for them to celebrate this sweet little girl. Mark and I went, thinking that we would be the encouragers. However, God had an entirely different plan. We were the encouragees. . . is that a word? I'm making it one.
(pictures from the release)
Another DSAG family was there with their son, Houston. He is one of the greatest kids EVER. He's got a phenomenal sense of adventure, an enormous vocabulary, and so much life and spunk -- he just does me in. Case in point -- when we first located him, Houston was in the creek. That's right. He decided it was too warm to play on the swings and slides. He got in the creek. Then, he decided to start taking pictures. Wanna see?
That is Houston -- taking my picture -- taking his picture. He thought the idea was hilarious--and the fact that he agreed to be silly with me makes me love him all the more!
Back to the star of the day. . . .Leilani is being moved tomorrow to another hospital in town. Kym and Pat will be able to spend much more time with Leilani -- only having to leave during shift changes. . . which is typical. They are very excited for this location change -- and for the chance to spend more time with her.
Please continue to pray for Lelilani. She is doing some better, but Kym shared today that she has begun choking -- for no apparent reason. Houston's mom said that he did the very same thing, and eventually outgrew it. This made Kym feel so much better -- because she knew that she was walking a road that someone else has already walked.
. . .and that is why Mark and I are so dedicated to DSAG. Parents of children with Down syndrome need to know that they are not alone. They need to be given hope. . .not percentages and ratios. (Percentages and ratios have their place, don't get me wrong) But, they need to be reassured that life with a child with a disability is not the death sentence some might make it out to be. They need to celebrate one of God's most precious blessings. (Can I get an "Amen" here?) And above all, they need to know that others have been where they are -- and that they'll make it.
So. . . along with my re-statement of our family purpose, I wanted to give you an update on Leilani. But, I also wanted to pass along to you a little dose of the hope we were given today. Are you ready? Seriously. Make sure you're ready for this one. This is good stuff.
This particular park is very nice. Lots of trees, playground equipment, benches, etc. Caroline decided (as she is prone to do) that just hanging around and talking isn't good enough. She found a chair swing -- with a new friend already swinging -- and she decided to go for it.
Kym (Leilani's) mom walked over with Caroline to the swing. She helped Caroline climb into the swing, next to a mom none of us knew. This mom (Rachel) took one look at Caroline, and said the following words that changed everything:
"I've got a daughter just like you."
Kym was bowled over, because right next to Rachel, was her daughter Lavonne. Lavonne is 26 years old, and has Down syndrome. She is a beautiful young lady. And, I have no doubt in my mind that she was placed in this park, on this afternoon, by God's hand.
Rachel, Mark, Kym, Lavonne, and Caroline all began to get to know each other. It was amazing. I eventually made my way over there. When I got there, here's what Lavonne told me -- which, by the way, is the greatest thing I've heard in a long time -- again, here's the part where I want you to sit down.
Lavonne just got her driver's license.
Ever since Caroline was born, the one thing we were told that she'd NEVER be able to do was drive a car.
Now, let me clarify this one thing. . . .I don't want EDISON to drive a car, much less Caroline. But, my heart is rejoicing tonight because I now know that it is possible. This girl defied the odds, and achieved what I was told would never be possible.
Now, I have to qualify all this with the statement that I realize this may be the EXTREME exception to the rule. And, it may not be possible for my daughter -- or for other families we know. But today, I met a girl who did it. And, I'll never be the same.
Sound extreme? It may sound like an extreme reaction, but it's very genuine. And I think by now, you (my dear readers) know me well enough to know when I'm exaggerating, and when I'm being totally real.
For real, friends. For totally real.
And, an update. . . . about house stuff and scrapbooking. Tomorrow, my plan is to take pictures of the bathroom update (as far as we've gotten -- there's still a ways to go) I also plan to take pictures of the scrapbook layouts I did last week while I was away. The layouts I've posted the past couple of days are digital layouts.