School Days

Now that Abbie is recovered from her round of surgeries, and therapy is fun again instead of being painful, it has become apparent that it is time to return more focus to her academic progress. A couple of weeks ago I settled in my heart that while I hope the educational system in Hawaii will improve it’s offerings for kids like Abbie, she and I can’t wait for that to happen. So, I headed to the garage. Once a homeschooler, always a homeschooler — with the boxes of books to prove it.

I pulled out a curriculum that I used with the twins when they were young. “Five in a Row” is perfect for Abbie, because each week is centered on one great piece of children’s literature, which is read every day. All of the activities for the week are then based on the story. We’ve chosen “The Story of Ping” for our first adventure. It tells the story of a duck that lives with his large family on a houseboat on the Yangtze river. Part of the story describes how the last duck back to the boat each night gets a spank. The first time I read that to Abbie her eyes widened and she jumped.

This morning we did a science experiment to determine what kinds of things float, and what kinds of things don’t. Another homeschooling souvenir, the Teaching Tank, allowed Abbie to see the experiment results up close. I place the plexiglass tank on her tray and then helped her drop each item into the water. Interestingly, as the experiment proceeded, her muscle tone dropped tremendously. I think all that girl really needs is stimulation.

Once we’d retrieved and dried our floaters (and non-floaters) we couldn’t let all of that lovely water just go to waste. I decided that we should color it yellow like the “waters of the Yangtze river” in our story. But, this was school, so Abbie didn’t get anything for free. She had her “yes” and “no” switches, so I asked her questions to decide what color of paint we should add to the water.

“Are the waters of the Yangtze river red?” I asked. “No, that’s not right” came the answer from her switch.
“Are the waters of the Yangtze river green?”
“No, that’s not right!”
“Are the waters of the Yangtze river yellow?”
She answered with her eyes, then her lips, then her body and finally her switch, “Yes.”
So, I dumped a bunch of yellow paint into the tank. It may be the mom in me, but the yellow water reminded me a lot more of pee than of the Yangtze river. Fun for Abbie, all the same.

We are also using the story to build her literacy by choosing her “words for the week” from the book. These are the words we work on each day so that she will recognize them any time and anywhere she sees them. Her amazing speech therapist also spent untold hours converting the story into a computer format that Abbie can interact with electronically. We really are trying to use every channel of input possible, while keeping it fun and interesting for her.

We visited the orthopedic surgeon on Monday for a three month follow-up. He was very pleased with her surgery sites and with all of her joints (well, Mr. Elbow wasn’t his fave, but that’s OK). He thought that Abbie’s feet were going to quickly return to the obstinate little critters they had been, pointed down and out with little range in her ankles. Miss Ballerina Feet really impressed him. She has a tiny curve in her back, but nothing even meriting an Xray. We are just going to keep an eye on it and work with it.

So many good things are happening at once, on so many fronts, that I feel like I’m standing outside Jericho. I’ve prayed for years for certain walls to fall, I just never imagined they’d all crumble at once. I’m closing in on publishing a book about blenderized diets — so if there are any families out there blenderizing who would be willing to share your stories, please contact me at varasix@aol.com. We are seeing very new, and very real opportunities in brain injury research and therapy development, as well as possible openings for educational setting advancements.

But, with all this excitement, the thing that thrills me the most is sitting on the couch with a beautiful girl reading about a little yellow duck far away.

Five Years

Typing the title for this post was very surreal for me. Can it really be that long ago that Abbie was given back to us on a beautiful Monday afternoon in May? Thinking back over the minutes that blurred into hours, which melted into days, months…and now years…there are some things that absolutely amaze me.

First is how utterly brave, strong and stubborn our girl has been through this whole experience. There is not one ounce of quit in her, and she has not batted her lavishly-long eyelashes at obstacles that make grown men cower. I wish I could say that we have done our best to support her through this, but in the most difficult moments, it has been her light, her smile, her tenacity keeping us afloat.

It surprises and humbles me that Abbie still has so many faithful blog followers. I’ve heard from some families in similar situations that “after so many years no one cares any more.” We are profoundly blessed by posts at this site, emails asking “where’s an update?’, and crossing paths at the supermarket with folks that already know all about our death-defying snowmachine outing or Abbie’s latest accomplishment. Even more than the support and encouragement this gives us, the power of your prayers continues to change Abbie’s life to this day. It saved her five years ago, and it is making a twisted path straight for her even now.

I am also acutely aware tonight of how many, many talented and compassionate professionals have come into our lives, and joined our team. I cannot imagine not having their expertise and guidance, but also cannot fathom not knowing them as people, as friends. This list is long, but I must recognize: Jayna, Lisa, Lynette, Patty, Drs. Lau, Tran, Yim, Burkhalter, Durkin and King, who are my “Honolulu Hui”. I, of course, must give a special mahalo to Dr. Jerry Tennant — doctor, innovator, friend — we wouldn’t be where we are with out you, Marilyn and your staff. And, Linda Kane, whose life truly is given to bringing “hope and a future” to families.

Five years ago I was worried about the survival not only of my daughter, but of my family. It was impossible for me to see how we were going to get from point A to point B — some days, I couldn’t even see the next step. God has been faithful and generous with his grace. When I pictured what my family would be like five years and one day ago, the portrait I imagined bears very little resemblance to today’s reality. But, I can say that not only did we survive, we are thriving. Second only to Abbie’s progress, this is the most profound evidence of God’s presence and work in our lives.

Finally, as I stop reflecting and resume looking forward, I am startled to find that I am filled with anticipation and excitement. It is stunning to find such joy in a journey that logically should be so wearisome and sad. God doesn’t waste pain and sorrow. I look forward to reaping what has been sown in tears, and am grateful that He has allowed us such an extraordinary adventure with Him.

Thank you for your friendship, fellowship, support and unceasing prayers — a testimony of God’s love poured out through people, of which we are the most grateful recipients.