Monday, June 30, 2014
There is nothing like walking by the shore, listening to the sound of waves hugging sand, that soothes a weary mind. As Alex and Izzy splashed in the water and skipped oyster shells this afternoon, I walked the shoreline, collecting sea glass. We have an enormous wine glass that sits in our kitchen, nearly filled to the top with wave beaten glass of all shapes and sizes, collected over the past six years. The frosted colors look like sugar candy. The sight of them brings back memories. Each one has a story. Although I hide in the mountains, as far from civilization as I can, when I am out running on trails, I always return to the sea. I empty my soul in the woods, but I am filled again with peace by the ocean. On Saturday, Alex spiked a fever of 104, the cause of which was a most insidious virus that has left him with blisters and discomfort. The seizure brought on by the fever attacked his little brain with a fury. It swooped in, halted all control he had over his body, and seized his ability to breathe. Erik had only just turned one last moment to lay eyes on him, bundled up in our bed while Izzy watched cartoons downstairs, as he started to shut the door and find some Tylenol. Alex's seizures are silent. Had Erik just left the room and shut the door, we would not have heard Alex upstairs. When Erik yelled for me, I expected to find Alex shaking a bit. I expected to rub his pressure points and help him fall asleep to sleep it off. Instead, I found him blue, his eyes rolled into his head, his arms shaking wildly. We did everything in our power to help him breathe again. We pounded his back and chest, massaged his body and yelled into his face, "Breathe Alex!" His body turned from blue to gray, his lips from blue to black. Life, with all its problems and irritations, seems so permanent, until it nearly slips away in a few moments. I knew Alex might never take another breath unless we stopped the seizure, and I happened to have one old Valium tube nearby. For all I knew, it was expired, but to locate the other Valium, downstairs in my purse, would have meant seconds we didn't have. I grabbed the old tube and administered it, and we waited. He started to breathe. His color immediately returned, his shaking stopped, and he drifted into a deep, heavy breathing sleep. It takes Alex days to recover from his seizures, especially if we have to give him Valium. So, today, he is finally out of bed and able to walk across the street to the beach. I soaked him in the ocean for an hour, hoping to dry up his blisters. I watched dig holes in the sand with Izzy, his best friend. I collected sea glass.
Wednesday, June 25, 2014
We are mid way through the first of three weeks of Lefty Righty Camp. I'm exhausted and Alex looks like he is running a marathon every day, which when you add up the work he is doing, is probably the equivalent. This amazing camp uses constraint therapy to work the weak side of kids with cerebral palsy. Alex has a brace on his weak left leg and a full cast on his strong right arm. For 6 hours a day, the P/Ts and O/Ts work the kids' weak sides, working their gross and fine motor skills. Because it is a long drive for us, and due to Alex's tenuous seizure stability, I have to stay on campus. The camp, run by a private therapy office, takes place at a very nice private school, the same school, in fact, that rejected Alex 2 years ago because they did not think they could "satisfy his needs". That bitter pill has mostly dissolved and I am enjoying running around their playing fields. Izzy, who needed something to do while Alex was in camp, is attending the private school's summer camp. This constraint camp is the first time in our lives that we are interacting consistently with families of children with brain damage. It is both inspiring and depressing. What strikes me most is the love and dedication of all of the family members who send their kids here. Families drive 2-3 hours in some cases, every morning and evening, to allow their kids to attend. Siblings join their parents on the long drives and are there to encourage and support. Yesterday, I watched as an older brother whispered into the ear of his little brother, blind and wheelchair assisted. The disabled brother listened intently and sat contentedly, madly in love with his older brother. Or was he the older brother? Maybe not. Maybe he was younger, like Izzy, who took over the older sibling's role. These healthy siblings carry concerns that most kids do not. Worry, fear, anger, love, pity, patience, guilt, sadness. It isn't easy for anyone. One incredibly brave mom flew in from Iowa, checked into the Ronald McDonald house, and overcame the many annoyances of traveling alone, with a child with disabilities, to a new part of the world, to stay in one of our state's armpits, after arranging for the care of her other three kids back home, so that her 3 year old would have this opportunity to improve her physical and cognitive abilities. She and her daughter are now staying with us. Many of the moms, like me, stick around all day, knitting, reading, or setting up small offices in the dormant kindergarten rooms, squishing into tiny chairs and hoping that no one asks us to find someplace else to work. Our hounds come along too. I take them running after drop off and take them out for periodic water breaks throughout the day. The campus grounds are about a mile circumference, so I can run, around and around, and always be near should Alex need me. It's all worth it. From day one, we have seen major improvemens in Alex's weak hand. He comments on it every day and shows me all the things lefty can do that he couldn't do last week. A new pediatric orthopedic surgeon whom we saw last month told me twice during our visit that "the literature shows that on average there is no long term benefit to constraint therapy...". I responded that it was constraint therapy that finally unwrapped Alex's arm from his chest at age 2, and that we have seen nothing but long term benefit from this therapy. She said, "oh, well, if it works for you...". Uh, ya, right. I wonder how many patients she has discouraged from taking advantage of this life-changing therapy. Fortunately for all of us at Lefty Righty Camp this week, we turn a deaf ear to the discouragement, and lead with our gut, and our eyes, and our hearts, as chipped and cracked as they sometimes feel.
Sunday, June 1, 2014
The website for my two books, The Value Tree and The Value Tree Journal is up and running this weekend. Check it out at www.thevaluetree.com or www.currierbooks.com. I am beginning to populate the calendar with demos of the book, which is appropriate for classroom settings of any kind (home schools, traditional schools), and will advertise these events on the website. Although the books are available on Amazon, they may also be purchased through me at any of the public speaking events. Thanks for reading!