Molly is in the High-Ability Learner program at school and each year they choose a topic to research and present on. Molly chose Aicardi Sydrome and the brain. This is the poster and brain model she made all by herself.
Molly was also a winner in the city's Arbor Day poster contest.
Molly's Arbor Day poster
Annie was happy staying up late with Dad after a church activity.
We've seen a lot of double rainbows from our back deck lately. So beautiful!
There's been a lot happening in Lexie's mouth lately.
My kids always seem to think they have to leave notes for the tooth fairy along with their teeth.
Justin and Molly ready for the Daddy-Daughter dance at church.
Justin was determined to take Annie to our church's girls camp this year. She was old enough to go last year, but the camp just wasn't accessible enough for her to go. This year the girls were staying in cabins near a lodge, so it worked out great for Justin to take Annie and be able to stay in a room in the lodge with her. She ended up having a great time and even made some new friends.
Since it was just Annie and Justin going to camp, Annie got to ride up front in her wheelchair.
Annie's friends were so nice to help do Annie's hair cute, since that's not really a strength for Justin.
Justin went to pick up Annie from an activity at the lodge, only to find her missing! He soon discovered that this group of girls had taken Annie in the kitchen with them so she could help them make cookies. What's even more kind and touching, is that none of these girls are from Annie's church congregation. I don't know who they are, but they were SO kind to include Annie. And yes, that tub is full of cookie dough!
Meanwhile, back at home, I had a lot of fun with Molly and Lexie for 4 days. But first, we had to clean out Dad's car before I could stand to drive it around.
We went miniature golfing and the girls were excited to see this Gateway Arch since they rode to the top of it a few years ago.
We went camping over Memorial Day weekend to Ponca State Park with our good friends the Packards and the Dinnwiddies. Here are some highlights from our trip.
We bought a cargo carrier in order to haul all of our camping supplies with us. It holds a surprisingly large amount of stuff!
But even with the cargo carrier full, there was barely room for the kids in the back!
We wouldn't travel long distances like this, but it worked just fine for the 2 hour drive.
Ponca State Park is absolutely gorgeous. We were driving through prairie lands and then out of no where, we drive down a hill and into this gorgeous, lush, park. It was hard to believe we were still in Nebraska.
These are our campsites. Dinwiddies' trailer on the left, Packards' in the middle, and our new 20' x 10' tent and covered picnic table.
This tent was perfect for our needs. Plenty of space to wheel Annie right in. We put down foam tiles to protect the ground from her chair, and to make it more comfy to walk on. It all worked fabulously. And with Annie on a double-high airbed, it wasn't too hard to care for her or lift her.
We had a double-high airbed too. And since the tent has holes in the tent to allow for extension cords, we were able to use the electrical hookups to power the hanging light and Annie's feeding pump.
Molly and Lexie had a great time.
This is the back of our campsite. It was so private and pretty.
Molly went kayaking on the backwaters of the Missouri River that first day. It was a bit cold and windy for my liking so I was holding out for better weather, but Molly had fun.
Packards kayaking with Molly
Annie had a great time and did extremely well on our trip. She loved being outside.
Gotta have a walking stick when camping.
We spent a lot of time at the archery range and had a lot of fun there. Justin was a bit surprised at my skills, consistently hitting a 30 yard target.
Justin ventured out to another archery station in the woods. They had foam bears, deer and other animals to hit.
Lexie had to take a shot.
Lexie got pretty good on her own.
But Molly still needed a bit of help.
These are the targets we were shooting at (the foam, not the people).
We enjoyed beautiful evenings around the campfire.
But Sunday morning was rainy until after lunch. So Packards invited us to hang out with them in their trailer. Annie fell asleep in their lounge chair.
And later, Lexie took a nap there too. We did puzzles and read books.
We went to a class on Outdoor Survival at the visitor center. Here Sharon and Molly are learning how to use "logs" to build a shelter.
Sharon helped Lexie do her macrame. They taught us macrame to make a keychain to carry with us, so we'll always have some rope on hand while hiking.
These three kayakers are our friends just coming in from a 5 mile run down the Missouri River. The weather was too rainy and cold so Justin and I didn't get a chance, but next year we plan to do it.
Sunday was Annie's 13th Birthday! So we all celebrated together with a birthday cake I took.
She's a teenager!
Before heading home on Monday we went to this popular Oak tree that is supposedly over 300 years old.
Last week marked one year since I started playing the harp. I was able to celebrate the milestone by playing at a harp recital last Friday night. Two harp teachers brought their students together to share what we've been working on.
Harp students who performed, surrounding my harp teacher in the front middle.
I performed "Upon the Willows" by Brook Boddie on a Lyon & Healy Prelude harp. It had a beautiful tone and I loved playing on it. This song was meaningful for me to play because I first heard this song on YouTube performed by the composer before I had ever touched a harp. I fell in love with this song, as well as the harp it was played on. Hearing this song on the composer's harp was one factor that led me to purchase his same harp--the tone was so beautiful! After starting lessons and buying my harp, I purchased my copy of "Upon the Willows" with the hope of playing it in a few years down the road, so I was very pleased to be able to learn this piece and share it at the recital last week with just a year of experience under my belt.
Lyon & Healy Prelude harp I performed on at the recital.
I wasn't able to have my recital performance recorded, but here's a
recording I made of it just at home on my Thormahlen Serenade harp.
All donations are tax-deductable and help fund research, the biennial ASF Family Conferences, and medical equipment for affected children like Annie. Donatations made in honor of Annie and for her benefit are greatly appreciated.
Annie's Song of Love
Songs of Love is a non-profit organization that writes personalized songs for critically ill children. Annie received her Song of Love for her 4th birthday on May 24, 2006.
She's With Me
This is a beautiful song by Collin Raye, written about his granddaughter with neurological disabilities. It really touched me since we have our own daughter with Aicardi Syndrome, a severe neurological condition. There aren't many songs out there about children with disabilities and their impact on people's lives, and this one seemed to be just so perfect. I love this song.
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