Sea Glass

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.

Lefty Righty Camp

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.

The Value Tree Website

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!

The Value Tree on Amazon

The Value Tree: Cultivating Values for Happiness and Success and its companion book, The Value Tree Journal, is finally published and available on Amazon. Finally. These books grew out of the value-based curriculum I developed over the years while homeschooling Alex and Izzy. My kids love Mommy School, and most sessions begin with a lesson on values. There are art projects, roleplaying exercises, and brainstorming scenarios to reinforce the value. The Journal follows the textbook, with writing exercises which allow the children to reflect and record how they are living their values in daily life. If you are homeschooling your kids, or want to supplement their study of values, you might consider including these books in your lessons.

Mile 31

A couple weeks ago, I ran an ultra with a friend of ours. He ran to raise money for The Baby Alex Foundation, and completed what would be his longest run to date, a 50K, 31 miles. He sent me an email before the race which read, "By the way, mile 31 is for Alex." At the start of the race, he pulled out a card with 31 miles and 31 names. He ran each mile for someone else. "There he is," he said, pointing to mile 31. Another friend of mine ran across the USA a few years ago, entirely alone. He spent his solitude praying for those in need, praying for himself, and meditating on life. People think I am a little nuts when my answer to so many of life's challenges is running. "You need to run," I tell people who come to me with problems. And if they are already running, I revise my statement, "You need to run farther." Running not only lowers the stress hormone in the brain, burns unwanted fat and calories, brings fresh air and new sights and sounds to our senses, but it also provides us with the time and mental space to meditate on our lives, the people we love, the mistakes we have made, and the future we hope to create. And running a few miles for someone else is a form of love. I suffer for you, because I love you, a sentiment repeated countless times in our world religions. Running is my religion, and while there is some suffering sometimes, it is mostly joyful and offers a time of reflection. I was running 50 miles that day a few weeks ago, and it meant running loops around a lake. It was a brutal day, cold and windy, like the rest of the year. I dedicated my loops to a few of the people in my life. One of those loops was for Izzy, who had broken into tears a few days earlier. "I wish I never had a brother with brain damage. I wish I didn't have to pry his lefty fist open to hold his hand. Why do I have to have a brother with brain damage?" She was so angry. I knew Izzy held intense emotions about Alex, but she had not yet expressed them to me in this way. We talked it out, and when she went back downstairs to play I went into my closet and cried. I ran about 8 miles for her at the ultra. I ran the next to last loop for Alex, and I imagined him and Izzy running with me. I tried to picture him running an even stride and his left arm as strong as his right, but that was incredibly difficult. For some reason, I just couldn't make the picture right. His arm was smaller and his limp was still there, but I also saw his smiling face, his mussy, sandy blond curls. He and Izzy and I ran together. I was slow, and they, not quite adults, kept my weary pace on Utah's dusty trails. Pure happiness. There were 3 more loops of the ultra which I dedicated to others in my life, and then the final loop, which I gave to myself. Once my heart rate rises comfortably, and the noise of everyday life dies down in my head, I enter a deeper meditative state when I run. The farther I run, the deeper I meditate. At some point, I am aware only of the rhythm of my feet and the trails around me, and eventually, I am ready to stop, return home and kiss the blondy curls and little toes sleeping soundly in their beds. How do I make the most of my life, whatever it may be, whatever mistakes have been made-how do I make every moment meaningful? It is amazing how clear the answers become after a few miles of solitude.

Harry Potter Life Lessons

Whenever we drive, whether the 5 minutes to school or 5 hours on vacation, we listen to books on CD. This past month, we have been going through the Harry Potter books. I had never read them and I am completely amazed at their brilliance. The kids and I are on the edge of our seats anticipating what will happen next. The books have inspired all kinds of creative play between the kids and we have designed our spring math course into what we call Harry Potter math. We do addition, subtraction, multiplication, division and fractions around crazy potions. For example, if you are making a Love Potion for 7 wizards, and you have 21 cat whiskers, how many cat whiskers go into each potion? Once the kids figure out the math problem, they then must design this witches' brew on paper. The kids have a blast doing the math and artistically demonstrating what cat whiskers and toad toes look like on paper. Now that we are well into our third book, I have noticed a pattern in the stories which prove the author even more brilliant than I had originally thought. She is a good story teller, and an excellent writer. But more importantly, she understands what it means to face your fears, and she demonstrates this understanding repeatedly, whether through the eyes of an adult or child. Today, when Harry Potter was learning how to defeat the mind power of the dementors, he had to think of the happiest thought he could muster while the dementor attempted to scare him unconscious with the horrifying image of his mother and father's death, complete with the sound of their terrified voices. Again and again, Harry attempted to think his happy thought so as to reduce the beast to a wisp of smoke and render it powerless. Again and again, he failed. Until he succeeded. Of course, this is a lesson in perseverance. But it is also a lesson in facing fear. Although Alex has been out of the hospital for years now, horrifying images of his suffering haunt my dreams, take over my peaceful thoughts in the middle of long runs, wake me in the middle of the night and taunt the quiet of our sleeping house by the sea. From our study of the brain, I understand that the more you meditate on a thought, the stronger it grows, and so I have worked to clear my mind of these images, so as to render them powerless. It took me a long time to figure out how to move these images out of my head, but as I have practiced, my control over them has grown stronger. I would assume that most parents face some pretty difficult memories and worries in the middle of the night. Whether waiting for a teenager to return home late at night, or recalling a child crashing while learning to ride a bike, we all wake in the middle of the night, worrying. We don't worry much as kids, so we don't really get the chance to strengthen the skill to face our fears and deal with middle of the night concerns, and I believe that is part of what makes parenting difficult. We aren't really prepared for the worry. I find comfort in the fact that Harry Potter is working to face his own fears. Even though he is a fictional character, he comes alive and teaches us all many lessons. Not only do we discuss the plot of the book every day, Alex and Izzy and I discuss the importance of the complex life lessons that the characters are learning. "Professor Snape is so mean!" huffs Izzy. "Yes, and you will have mean teachers too. Pay attention to how these kids deal with them. You need to learn to deal with them in your own life." "The Dursleys are so unfair!" exclaims Alex. "Yup. Unfair. Cruel. Rotten. Unhappy. Scared to death of Harry. What will you do when you meet people like that?" "Fred and George Wheasley break so many rules! Hermione is such a know-it-all! Scabbers is such a sad rat without any powers!" And most important are our discussions around facing fear. Whenever the kids have a new task that scares them, I remind them of Harry Potter. "I'm afraid to step on the ice, Mommy. What if I fall on my skates?" "I don't even know how to play whiffle ball, Mommy. What if I can't hit the ball and the kids laugh at me?" "I don't have a single friend at this camp. What if no one likes me?" "Yes," I tell them. "That is scary. What would Harry Potter do?" And so, when I wake in the middle of the night to the image of Alex covered in blood after a botched procedure in the NICU-so much blood that he had to have a blood transfusion afterward-with Erik, pathetically sponging his little feet and not a single doctor or nurse to lend a hand, one of the many images I will never quite conquer, I picture Harry, wand in the air, conjuring the image of his first flight on a broomstick while reducing the dementor to smoke. Then I think of the kids' peaceful faces as they dream in their beds, and I fall back to sleep. And in the morning, while cooking bacon, I am able to smile.

Creating Happiness

The other day I made an accidental purchase. While in the book store, I picked up Gretchen Rubin's The Happiness Project and skimmed through it. At first glance, it seemed self-indulgent (on the author's part) and long. I wasn't really interested in reading about someone's 12 month project to find happiness. I really just wanted a book that might give me a few basic steps to appreciating every day. It has been a hard winter. But somehow the book found its way into my pile of other books, and when I got home and discovered it next to my bed, I figured I might as well read it. For anyone looking to improve a life, take it from fine to good, from seasonally affected to "Bring it on, rain..." I recommend it. For parents, I really, really recommend it. For parents of sick children, it is a must. In fact, it is going to be part of the book list for The Baby Alex Foundation's Alex's Libraries which we are setting up in hospitals in CT this year. The book is filled with some shocking statistics (A 30% increase in one spouse's happiness boosts the other spouse's happiness, while a drop in one spouse's happiness drags the other down.), great insights (when I made the effort to reach out for them, I found that the ruby slippers had been on my feet all along), inspiring quotes (the days are long, but the years are short), and a plan for focusing on one aspect of happiness each month (January: Boost Energy; February: Remember Love...). The author, Gretchen, is looking to make her good life happier, maybe because of middle life malaise, or maybe just as the next challenge to an otherwise incredibly accomplished life. In our household these days, we are all working on happiness. Alex reminds me often to smile more. Sometimes he gives me a hug because I look unhappy at breakfast. Izzy tells me point blank that I do not demonstrate enough happiness when I spend the afternoons with her. They both complain about Erik being tired all the time (the poor guy). I read the book in a few days and immediately set to work to extract what might work for us. Every family is different, and every family has different needs when it comes to focusing on happiness. What stood out for me is the idea that you simply can't afford to wait to be happy. No matter what the circumstances, to truly appreciate every day, you need to work a little, and honestly, life is way too short to wait for the perfect moment to find happiness. Once you work a little, you find the happiness you desire, and realize it was there all the time. After a while, it takes less work. For me, it is simply a matter of smiling more often, so that the kids see what I feel: happiness at being with them. There is no place I would rather be. I didn't used to smile while making bacon at 5:30am, but now I do. We are all happier.