Monday, December 20, 2010

Values and Rules

Through Success Magazine, Erik and I have been introduced to two incredible parents. They are not new to the parenting scene, but we have only just discovered them. Linda and Richard Eyre are best selling authors, have an incredible website, give lectures around the world on parenting and are just the people we were looking for when we decided it was time to gain some order around teaching our children values. You hope as a parent you model what you want your kids to learn, but there is so much more that can be done to actually teach them about values and healthy living. I am currently reading Three Steps to a Strong Family and Teaching Your Children Values. You have to be ready to do some work, prepared to accept teeny tiny baby steps forward as progress, and then just have fun with it.

Taking the Eyre's advice, we have involved the kids in coming up with "family rules". When I have one of them alone, I do this work, because usually when they are together, the exercise quickly deteriorates. They have come up with so many great rules for our family and I have written them all down. At some point, I am going to stick them into 5 categories, and then post them on the wall. Things like, "when you are speaking no one else should speak and then they should say excuse me when they want to speak" from Izzy (say scuse me to speak and Ales no speak when Izzy speak) and "no spilling coffee or juice on purpose, only by accident" from Alex. Great rules.

We are also slowly working through the values section. After explaining what the value means, you give the kids examples and let them come up with some of their own so that they really get the concept. You can then role play. Izzy doesn't quite follow it all, but she tunes in every once in a while and it will surely sink in as she approaches her third birthday. A 3 year old is totally ready for these exercises! We have so far worked through honesty, courage and peacefulness. Alex loves hearing scenarios of what it means to be each of those, and how one can act to reinforce these values. We role play and he loves it.

The punishment for breaking the rules (or the peace of the house) are as follows, thank you Eyres: If you hurt someone else, you sit on the repenting bench (we aren't religious, but we kept the name) until you can explain exactly what it is you did wrong, apologize and then hug. We force the hug. Izzy only hugs on her own terms, so she ends up on the repenting bench at times when she won't let Alex hug her. Once she repents, they hug nicely. Forced hugs, like forcing a smile-feelings often follow actions, and it seems to be working so we will keep at it. If you are loud, you sit in the quiet chair until you quiet down. Unlike time out, which wasn't working very well for us, these two places for punishment really seem to be working.

We have also been sticking with the weekly family meetings where we discuss our week, our goals for the week, our activities and any problems, concerns, etc. The kids love these meetings. They also get their salary at these meetings from Daddy's piggy bank into theirs--one quarter for every star on their weekly start chart. You get a star for cleaning up your toys, your room, for being polite and nice, and using your left hand (even Izzy!).

Sounds like a lot of work, and it is, sort of. Once you get the hang of it, you can often do much of the work while doing something else. We tend to travel a lot with our kids, so we hold family discussions in the car, which is usually a very quiet place to talk. We run scenarios and explain values. My weekly star chart is usually the back of an envelop or other stationary which I quickly scribble the days of the week on, and I usually only remember to write a star onto the chart 2 or 3 times a week--you do the best you can. Taking the time in the beginning to get yourself organized will save lots of time later on.

Part of our reason for establishing these rules and values are obvious, to create a system of order and punishment that is fair, consistent and effective. But the second part of our effort has to do with how the rules and values engender self-esteem. Alex and Izzy feel part of the process, as integral people in the family, with responsibilities to uphold and jobs to do. They see the fruits of their labors, whether it is a happy parent or a quarter, and in the process they learn very adult concepts. Through this process, they are building self-esteem.

Ski Bums

This weekend, we got Alex and Izzy on skis for the first time. We had no idea how we were going to approach teaching them how to ski, something our parents never did for us but which we figured out how to do later in life. We just happened to be going by a ski store on our way to the farm this weekend, and we stopped in to see about buying skis, which are very expensive to rent. You hate to actually buy skis, kind of like buying ice skates, which you know your kids are going to use a few times and grow out of by the next season. Alex and Izzy are the same size now, so no chance of passing anything down to Iz next season.

We happened to be served by a very experienced snow instructor who explained the process of teaching 2-3 year olds how to ski. He recommended these skis called "Lucky Bums", which look like skis but attach gently to the child's snow boot. The most frustrating thing about skiing for most people is the ski boot, its awkwardness, the difficulty one finds when standing up in them, etc. Kids hate them. I witnessed my nephew have countless meltdowns within minutes of putting them during his first two seasons learning to ski. This instructor said that once the kids get used to wearing the Lucky Bums, and become comfortable walking and gliding around on almost flat surfaces, we could move on to the ski boot, next season. He said we should then let the kids use the actual ski boot like a snow boot and walk around in it all winter in the snow to get used to it. Once they like it, you can then finally get them on real skis.

I was worried about how the kids would react to being on skis, or maybe just worried about how I was going to feel if they had full blown temper tantrums and refused to try skiing. Erik and I recently started listening to Darren Hardy's Compound Effect (awesome book!). He explains how every goal you want to reach in life, whether to become a multi-millionaire or an elite athlete, takes baby steps, done consistently over time. And so, Erik and I reminded ourselves that our 2 and 3 year olds were not going to zip down the slopes this season, and we needed to do nothing but praise even their small efforts.

Izzy got on her skis first, and took off down the steep driveway with me holding onto her ski jacket. She loved it. She, like her mom, is an adrenaline junkie. We did that a few times and then I tried to interest her in a flat surface and she kicked off both skis and announced she was finished. She lasted about 5 minutes. So, when Alex got into his skis, I expected the same. His first ski session lasted about 15 minutes, and he seemed just fine with the fact that he was unstable on his feet and that we held both of his hands and gripped his waste and kind of pushed him on the flats. We then went sledding. After some indoor playtime, I tried to get Izzy to try again, but she wanted nothing to do with the skis. Alex said he would try. After an hour, without holding my hand or being held, but just walking and gliding around on the driveway, I had to switch off with Grandma because I needed lunch. We simply could not get him to come in. Eventually we bribed him with dessert. But, as soon as he had eaten, he was back out there, shuffling along like an old man, talking and singing and having a grand time. We seem to have found another sport he loves, which makes me very, very happy.

Wednesday, November 24, 2010

Botox Treatment

Yesterday, Alex received his first botox injection into the two most problematic muscles in his arm. The injections were painful, although he held his breath and only whimpered a little, and then the pain went away and he recovered. He was incredibly brave. We talked all morning about the process and when we arrived at the hospital, he was nervous but trying very hard to accept his fate. Alex's pediatric orthopedic surgeon is amazing and he is madly in love with her. She takes her time and explains everything she is doing to Alex so that there are no surprises. Alex's physical therapist was also there to examine the arm and agree with the surgeon on which muscles should be targeted.

They did a physical assessment of the arm before the treatments and then again about an hour later as he had a new cast made for his right arm. To our complete amazement, the botox had an almost immediate effect. By the time his new cast was made (which will restrict his right arm while the muscles in the left arm work and get stronger), his left arm demonstrated measurable changes. Alex has never been able to do a karate chop with lefty. But after the botox, which deadens the nerve endings of the muscles that were causing problems, he was able to do repeated karate chops. He was also able to cover his face with his hand and reach for things with less rigidity. I am excited to see what today brings, as it takes about 3 days for the nerves to completely die. Over the next three months, they will regenerate, and hopefully do so in a manner that will allow the hand and arm to function more properly. Even Alex noticed a difference last night when we were doing demos for Daddy.

Alex knows that he needs to work that left hand. He told me yesterday that it was so much work to make lefty do things. We have been talking a lot about work, and how important work is for getting where you want to go in life. The physical therapist touched on this as well. We'll see how working with the cast strengthens that left arm.

Tuesday, November 23, 2010

Building Self-Esteem

We had a pretty large setback with Alex when he attended school this fall. Whatever had been going on there, and then happened on that one day he didn't get his snack, it did some serious emotional damage. For weeks now we have been dealing with the repercussions. He repeated what he says his teacher told him, that he is a "bad boy", and still acts out every time he says it. He still talks about not getting his snack that day, and he often asks me if I will feed him even if he is "bad". Grrrrr. Apart from being furious at the school, not to mention the director's insensitive and extremely unprofessional response to our withdrawing the kids, I am really saddened. We have done everything we know how to build Alex's self-esteem, to tell him that even if he can't do something right now by himself, like putting on his shoes when his younger sister zips through putting on hers, that he will get it. We talk in very adult terms about the weakness in his left hand, how proud we are of him for working so hard to make it stronger, and how one day, it will be just as strong as righty.

After listening to an excellent CD from Success Magazine's November 2010 issue, I have been inspired to add to my repertoire of exercises in self-esteem building. Part of the discussion centered around having families and children write down goals, for the family, for the year, academically, in extra curricular events, and in character building. It goes on to discuss how introducing children to the idea of earning money for things they want helps build their sense of self-worth. I listened to some of the ideas on how to implement both parts and came up with our version for children age 2-3. This morning, in Mommy School, we practiced what will become our evening ritual: picking up our toys and straightening up our rooms to earn one quarter which the kids get to put into their piggy banks. I let the kids help me come up with the chores, and which toys they would like to pick up. Then we practiced. Izzy picks up blocks. Alex takes care of little toys and trucks. Even on the first try, they did it and were thrilled to plop their quarters into their piggy banks.

Recently, Alex has been writing to Santa because he really wants some Thomas the Train toys, specifically two he saw in a magazine that came in the mail. I told him that Santa usually bring one big toy, but rarely two. He just can't fit it all on the sleigh. After our exercise in cleaning up toys, Alex said to me, "Mom, I think Santa won't bring my toys this year." I asked him why, FEARFUL he was going to relive his school experience and say that he is a "bad boy", and to my astonishment, he said, "Because Santa wants me to earn the money to buy them myself." Wow. Mommy School was pretty much over after that. There was no better lesson I could teach today.

But Mommy School really never then I made Alex and Izzy police officers to police the problems we have in our house. Small children, small problems, I know, and this is a good lesson in healthy habit-building for when we have larger children and larger problems, I hope. Alex uses bad words on occasion when he is angry. So, Alex is now the Word Police. His job is to be sure no one says bad words in the house, and to also encourage good words. I help him think of good words we can substitute for bad words, and for compliments we can make to one another in the family to make the other members feel good. Izzy is the Potty Police. She is responsible for helping everyone go pee-pee in the potty. The kids take their jobs very seriously. Erik is actually the one who gave me this idea. He had a problem kid when he volunteered during business school with at-risk kids. This kid would eat and steal the snacks that the whole group was supposed to share. So, he made this teenager the Snack Police (maybe he called it something else, Snack Manager? I don't know.), and this kid took his job very seriously. He made sure no one, not even himself, took the snacks.

Monday, November 22, 2010

Food and Music Therapy

For children with physical disabilities, incorporating food and music into their therapy makes therapy a lot more fun, even something for them to look forward to. Alex does not like most therapy that we use to strengthen his arm and hand. But when we add food or music, or both, he forgets that he's in therapy. Creating hand turkeys last week was a lot of fun and good exercise for lefty. I mixed up the sugar cookie dough and allowed him to first knead it, then help me pat and roll it (all activities that use both hands) and of course, he got to eat some. We then placed lefty on the dough, which was tough. When he is excited or nervous, Alex makes a fist of lefty and it is hard to get him to relax to open it up. We were not able to trace over lefty, because he couldn't open it all the way and got frustrated when I encouraged him, so we just let lefty play feel and play with the dough. Any new texture on that left hand stimulates the hand. We traced righty. The next day, we used frosting and candy to decorate the turkeys while we sang a turkey song and continued to discuss Thanksgiving. Izzy had a blast and was very focused when I traced both of her hands.

This weekend, we discovered another therapeutic musical exercise. Alex has been working at the piano, guitar and drums for months, two activities that he naturally will use his left hand to perform. I don't know why lefty follows what righty is doing when it comes to music. Maybe that is something that could be studied more seriously--is it just because music is fun to do with both hands, because new areas of the brain are activated when it hears music, because the music relaxed the brain and muscles and allows the functioning muscles to overpower the tense muscles? I have no idea. When Alex is doing almost anything else, he can find a way not to use his left hand, but when it comes to music, his left hand is immediately involved. He could easily play the piano with one hand, because he is not yet reading music, but he never does, he always puts lefty up there and pounds away with lefty too. The same is true of the drums and the guitar (mostly air guitar which he sings along with, imitating his uncle who is an exceptional banjo player). Alex has asked Santa for a drum set, which Santa will surely bring (Costco, $19).

So, the exercise we discovered this weekend is the harmonica. His grandparents pulled an old one out of a drawer and Daddy showed Alex how to use it, and he immediately started playing it. He loves it. The unique point about the harmonica is that when you hold it to your mouth, both hands are turned toward your face. This is the exact movement that Alex has so much trouble with. His CP causes his hand to turn outward which makes it almost impossible to feed himself, draw, put on shoes, etc. Gripping the harmonica, with support from the strength of the right hand, helped the necessary muscles in the left hand take over so that he could turn his hand toward his face. It was amazing. Because he didn't realize he was doing "therapy", he was relaxed, enjoying his music, and therefore, his left hand was relaxed. His misbehaved left arm muscles relaxed and stopped fighting the muscles that make his hand turn inward.

Incidentally, cookie sales on Friday were excellent. Alex and Izzy had a blast selling their cookies, and soon a handful of the neighborhood kids were helping us too. We took the red wagon down the street with our sign and cookies on top and sold them to the road crew working on our road. In an hour we had sold out. We raised enough money to buy 3 large turkeys. We talked about the activity all weekend, further reinforcing the point of the exercise to the kids. An awesome activity!

Thursday, November 18, 2010

Cookies for Charity

Every year, Erik and I donate turkey dinners through Human Services and other avenues to families who can't afford them for Thanksgiving. This year, we have enlisted the help of our children. Alex is just at the age where he understands the idea of giving, and through this process we hope to begin instilling a life-long sense of charity. A recent Success Magazine article discussed the fact that it is never to early to teach children about money, saving and charity. I agree. Both children have piggy banks, which periodically will be converted into cash in their saving accounts. They understand it takes money to buy things, and that not everyone has the money they need to buy the things they want.

As part of the educational process, Alex, Izzy and I have been baking cookies to sell this weekend to raise money for our turkey dinners. Today at Grandma school we will bake more cookies, in the shape of our hands which we will then decorate like turkeys, all part of their schooling experience. As with every exercise, Alex will have to open his left hand completely while his right hand (with my guidance) helps him trace his left hand on the sugar cookie dough. This is a good lesson for anyone who has a child with CP that affects the hand. It's fun, not too taxing, and rewarding to watch the hand turn into a turkey.

I read a lesson plan online which we used this week to reinforce our idea of thankfulness and giving. We cut out shapes of leaves we found during our outdoor hikes, and then wrote on them what we are thankful for. We put up a thankful tree on our kitchen wall and as we think of thinks we are thankful for, we add them to the leaves on our tree. The children love this exercise and it has sparked many positive discussions. I think they will be prepared at Thanksgiving this year as our family goes around and talks about what each of us is thankful for.

Monday, November 15, 2010

Team Baby Alex Foundation Heads to the Jerusalem Marathon

Thanks to the generosity of one of The Baby Alex Foundation donors, the Foundation is offering an all-expense paid trip (entry, airfare and hotel) to the Jerusalem Marathon for three of its top fundraisers who will run the race on March 25, 2011. For more information about this exciting racing opportunity, visit the website Every runner who raises at least $2500 will get a free charity slot in the race, and anyone who raises $5000 will be entered to win one of the all-expense paid trips. The winners will be chosen this winter at a fundraising event in NYC. Stay tuned for more info on that event.

If you are a runner reading this blog, join Team Baby Alex Foundation at the inaugural Jerusalem Marathon. Help us raise funds for and awareness about the Foundation and its support of pediatric brain injury research. Anyone racing for the Team will fall under our Adidas sponsorship and receive lots of cool Adidas gear. You might even land in the documentary being made about the event.

It's fun. It's for good. Join the cause!

Sunday, November 14, 2010

Mommy School

Mommy School started on Monday, and I have never seen our kids more happy, cooperative and excited about every day as they have been this week. I do my best to create short (10 mins), interesting lesson plans and to incorporate a lot of body movement, for a couple of hours each morning. After the lessons, we go outside, no matter what the weather, and get wet and dirty and tired. We come inside for lunch, bath and naps. That is Mommy School. It is taught in English, Italian and sign language. This week, we read books, learned another handful of Italian words, reinforced the alphabet in our three languages, sang many Christmas songs and thanks to Alex's suggestion we clapped out the syllables, studied our globe, learned the difference between a dolphin (mammal that breathes through a whole) and a shark (fish that breathes through gills), an herbavore and carnivore. We potty trained on a schedule. We put our napkins in our lap and pretended we were at a restaurant when eating. We had music class, art class and on Thursday we went to Grandma's farm for science and art. Thursday is Grandma School.

Basically, I am teaching the kids what I had hoped they would get out of school this fall, with the addition of a healthy dose of love. Although I have lessons planned, I move according to their rhythm, and when it appears it is time to get up and dance, we do. We study words of the week, and this week, our word was happy (Izzy's) ecstatic (Alex's) and felice (happy in Italian for Mommy). We ended the week with the word cooperation, to prep for the weekend when cooperation is required for our activities. Homeschooling takes a lot of work and patience. It also takes us much of my day. I work on the Foundation in the afternoon and evenings. I am completely exhausted by the end of the day, but seeing my children so happy, using lessons they learned during the week in their everyday conversations, and being so excited for more, I feel for the first time since I had children, like a good parent. Parenting can be so unrewarding sometimes, especially if your measure of success for most of your life involved your career and adult relationships. But, watching the kids go from incredibly unhappy just a few weeks ago, to the happiest I have ever seen them, makes me feel I have made a difference in the world, because I have made their world a place they want to be in every day. Positively influence the world on a micro level, that is what we do as parents.

People may think the kids' lessons too advanced for this age group, but I say, if they get it and the info is useful to their lives today, then teach them. I take things down a notch for Izzy, so that each lesson reinforces numbers and colors and other knowledge she should be learning at 2. Why is it important to understand what a mammal is when you are 3? Well, mammals live in the water but breath through a hole, like our nose, and must hold their breath under water, like us, and now when I take Alex to the pool, he wants to swim like a dolphin and I hope this helps him stop choking when he puts his head in the water. Why is it important to know where the continents are, that koala's live in Australia and Ni Hao Ki-Lan (a cartoon) is from China and that Italy is the small country shaped like a boot? Being able to locate these places on a map helps to give the kids a sense of place, an understanding that there are places different from home where people speak and live differently than we do. They love maps, a foundation for navigating mental and physical space. Why learn different languages? Because it develops the brain, and should build their ability to learn languages in the future. Both kids have learned the languages they speak as easily as they have learned English and I believe that all schools should start their language programs at this age. Both kids want a challenge, and the school we had them in this fall wasn't cutting it. Hopefully Mommy School will do it, for now. At least Mommy is satisfied that the kids are taught with love, and challenged intellectually.

Wednesday, November 10, 2010

Sleep as a Measure of Happiness

As Alex grew more stressed out at his montessori school, his sleep patterns started to change. As we look back on the time period, we realize Izzy's sleep patterns were changing too. Izzy is incredibly self-confident and not the emotional sponge that Alex is, and so we usually feel no matter what happens, she will bounce back. Which is to say, we should be more attentive to stresses in her life, because we missed this one. For about a month, neither child was sleeping well, and both had stopped napping. Although many 2 and 3 year olds stop napping in a completely normal way, it was not normal for ours. Rather than nap, our kids dragged themselves unhappily through the day and had fitful nights of half sleep. We tried everything we could think of to get them to nap, including driving them in the car, taking them in the baby jogger, etc., but both were agitated. I thought they were growing out of their naps. I now realize they were stressed out. During our vacation, they started napping for brief periods. And now, they are back to their normal routine, napping at least 2 hours every after lunch. They wake up happy, they sleep well at night.

Last night Erik commented that it had been weeks since he had seen our children as happy as they were when he came home from work. We picked Erik up at the train station and Alex couldn't wait for his dad to hear him clap out the words of Frosty the Snowman. This is not something we taught him, but something he picked up on himself from reading the Frosty story from a book that plays the tune (and which he has not heard in about a year because the battery died, but which probably came to mind on Monday when it snowed--he can't wait for real snow). Everyone had to be quiet in the car while he clapped, one clap for each syllable of the song. Izzy joined in, not quite on cue, but she tries to be part of everything Alex does. Incredibly, Alex clapped out the song exactly as it would have been sung. We then listened to Frosty on a CD I purchased that afternoon, and Alex complained that it did not go the way the book did--the lyrics were different. Incredible that he recognized it. The rest of the night proceeded in this vein, two happy children.

Our experiment in school has been a painful lesson for all of us. I knew Alex would be stressed out by a large class size, but when I visited the class last year, there were only a handful of children in the class. This year, the director allowed 19 toddlers into the class. I was nervous about this situation, but thought we should give it a try, and there was one wonderful teacher both kids immediately attached themselves to. Although we were never crazy about this school, we thought it would be a good introduction for our kids, and how could 3 hours a day be so that detrimental? Well, we found out. The kids' favorite teacher quit after 5 weeks because she didn't like the way the school was run, and our kids never quite found an emotional replacement. If the school and teachers are not right, any amount of time can be detrimental. But, we are adapting and because the kids are showing obvious signs of better health, we know we have done the right thing. Their nap patterns alone tell a detailed story.

Sunday, November 7, 2010

Changing Course

Last week, we took the kids on vacation. It was not a particularly fun vacation, because we were doing work on one house and then on another house. It rained a lot and was cold and we were without many of our toys, no TV, etc. But, the kids got to see their grandparents and cousins a few times and just have time to be themselves.

At the start of the week, Alex was incredibly angry. He had reached an all-time high in his anger. He was completely impossible. "No" to everything, bad words, lots of hitting. We were really concerned, and bewildered. There was an incident at the school the week before, where he had either been told or made to feel that he was "bad", and which he repeated at least a dozen times. "Mrs. So-and-so says I'm a bad boy." And he was definitely acting what he felt others were seeing in him. During that same incident, he had not gotten his snack and when I arrived to pick him up, he was crazed with hunger, begging me to give him something to eat and drink. He says his teacher told him if he used good manners he would get his snack, but he didn't and so did not get a snack. The teacher denies this. Either way, Alex believes he was denied snack for bad behavior and this belief has sunk deep into his psyche. I spent the week reading on CP and anger, and we used the vacation week as a time away from the school environment and to practice new approaches to help Alex deal with anger. I can't tell if anything we did actually helped curb Alex's anger. He just seemed to wake up calmer every morning. By Thursday, his behavior had taken a noticeably better turn. By Sunday, we had gone 4 days without significant behavior issues. More importantly, he had been happy for four days, smiling and laughing and relaxed.

Was it school that was stressing him out? Undoubtedly. Was he frustrated seeing other kids perform basic tasks with ease which he couldn't do? Was it the teacher who made him feel "bad"? Was it the biting and hitting he received from other kids in the class? Was it the chaos of the large class size? All of it, none of it? Whatever the stressors, Alex was not thriving in school. I recently read John Maxwell's Failing Forward, which advises that if you find yourself on a failing path, get off it. And so we did. When we mentioned on Sunday that he was returning to school, he got upset and said he would not be given him snack because Mrs. So-and-so thinks he is a bad boy and won't give him his snack. That was all I needed to hear to pull both kids out of the school.

For now, we will return to home schooling. The kids have been accepted into a phenomenal private school, but before embarking on that path, we want to be sure Alex is ready for school. Maybe we will start in the spring, or wait until the fall. Maybe we need to wait another year. We will progress slowly and evaluate. The single most important thing we can do for Alex right now (and I might argue, for any child) is to build his self esteem, through love, trust and positive experiences. That is our mission, and our responsibility.

Friday, October 29, 2010

It Only Takes One Good Teacher

It only takes one good (or bad) teacher to truly affect a child's development. Fortunately, Alex has connected with one of the teachers in his class. Today she told me that she and Alex have a secret hand shake, which she calls a hand hug. They lay their palms flat and (hers against his left hand) and curl their fingers around. Alex uses it when he needs to communicate something to her that he can't verbalize. She uses it when she needs to get his attention and address a behavior. I will try it, or something like it, at home. I was so impressed with this simple idea. She said was very effective this morning. We'll try it. Thank goodness for great teachers.

Wednesday, October 27, 2010

Charting New Waters: School and Emotional Health

Alex started school this year, and over the past month his behavior changed drastically. Our happy-go-lucky child slowly started pushing, hugging too tightly, taking toys from others and more recently, using two bad words, repeatedly. At first, we treated his behavior as a 3 year old change, but soon realized we needed to reexamine his actions and more importantly, our reaction to those actions and our efforts at boosting his self-esteem. When Alex went to school, he began to realize that he can't do what other children can do, and it was the first time he started to process this difficult realization. He is very frustrated. He is also 3. We have a tough combination. Over the past week, rather than put him in time out when he misbehaves, I ask him if he is angry. He says he is, but doesn't know why. I give him a big hug and tell him what a good boy he is, and his poor behavior stops immediately. He is good for several more hours, and then he trips up and we go through this loving routine again. His behavior has improved overnight and continues to get better. We also realize that he needs extra sleep, extra calories and extra time alone with his parents to help this sensitive and intelligent child process this change in his life.

We were initially disappointed with his school on many levels. That said, we have increased our communication with the director and teachers and believe we can all work together to address Alex's physical needs within the context of school and help him pursue more challenging work. A school that does not regularly teach children with disabilities needs help from the parents of the disabled children so that they are able to address each individual child's needs. No one wants to be guessing as to how they should treat a child with special needs. The school also needs excellent teachers, a solid director, and a philosophy of love and patience. When looking for a school for a special needs child, some of the questions that might be helpful to ask are whether the school has ever had a special needs child, how they have addressed the disabilities, how they push children intellectually, how they attempt to build self-esteem. If there is or has been a child with special needs at the school, it might be helpful for the families to communicate with each other as well.

And as with sending any child to school for the first time, parents truly need to be attentive to changes in the child's behavior, sympathetic on both sides, to the child and the school, and courageous to work through problems while showing their child extra love and support. If the school really doesn't seem right, then maybe a different school would be more suitable--but that decision must be made after a serious trial period, because transitions are extremely stressful on toddler. The fall, I have been completely consumed with the kids. All of the time and emotional energy I spent training last year is now spent with the kids, helping them adapt to all the changes they are facing. It is a very difficult job, and has challenged me to read even more literature on toddlers, emotional issues faced by children with CP, toddler school transitions, extraordinary memory in children with brain damage...a whole range of topics.

Base training starts Saturday. Ironman St. George, one of the (if not THE) hilliest Ironman in the series is the first weekend in May. Right now, I'm exhausted, have a terrible cold, and am completely out of shape. I always say there should be a special division for Ironman Mommies with toddlers. I wear my Life is good t-shirts frequently, and am reminded of our blessings. Alex may not be able to put on his shoes by himself at age 3, but I'm sure by the time he goes to college, he will have figured it out.

Wednesday, October 13, 2010

Jeff Runs America

There is no euphoria like that which you feel from a long run. Your mind is at peace, your creativity is sparked and you are prepared for whatever kind of day is thrown at you, and you get to eat a couple of chocolate chip cookies without feeling guilty. You might even have had the simple pleasure of watching the sun rise. People often ask me if I ever have a bad run. I have slower than I would like runs, races that don't go as planned runs, but any run that you finish is a good run, and the longer the run, the better.

I was recently introduced to Jeff Grabosky, who will be doing some very long runs in the near future, traveling across country in running shoes, from CA to NY. Although I have never met Jeff in person, we connect, like most runners do, over the long run. I have always wanted to run across the country, and hope to do so some day. In the meantime, I will keep track of Jeff's progress and keep him present on our blog. I know Alex would be all for joining Jeff on this long run, so maybe we will track him down as he approaches the east coast to keep him company for a few miles and deliver pizza. Jeff will be wearing a Baby Alex Foundation t-shirt during parts of his run as an honorary member of our team. Thank you, Jeff. We'll post any pictures he sends to our website.

To view Jeff's progress, go to

Friday, October 8, 2010

Karate Therapy

I have written several entries about Alex's experiences in karate, but as it continues to amaze me how therapeutic this sport has been to his left (disabled) side, I need to keep writing. This week, there were three instructors for three children in karate. So, the instructors were able to work individually to help the children improve the precision of their karate moves. In particular, they worked on punches and kicks (all done against a kick pad).

The punch is one of the best movements we have found to strengthen, lengthen and turn Alex's left arm. He has trouble extending this arm, which due to his CP is chronically bent. He also is virtually incapable of punching his arm out straight. Instead of going straight, it turns inward, forcing his hand into a twist. Because of this awkward movement, Alex can not feed himself with his left hand. He can't use it to pick things up off the floor or use crayons. This is a serious disability. The repeated movement of punching forward, against a target (the pad) which adds a level of focus to the movement, has helped Alex to begin to gain some control over that arm. He fights against the tendency to turn inward, but he succeeds to some degree to keep it straight. The instructors did fast punches last week, which meant that the children had to punch their right arm against the right pad when it was held up, and the left arm against the left pad when it was held up. The pads were held up at random, and the children had to react. It required great concentration and focus. After about 10 punches, the children had to take breaks, then regroup and go again. I was amazed at how much better Alex's left punch became over the course of the 7-8 minutes of this exercise.

Alex's balance is still poor. Two of the main objectives of this class are coordination and balance. One way to work on balance is to balance on one leg. The instructors allow the children to hold onto the instructors' shoulders to help the children gain a sense of the balance needed to perform a one legged stand. They work on raising knees. These knee raises and balance help with their kicks. Alex's grandma, Gigi, gave Alex a punching bad last week, which we hung from the ceiling. Over the course of the first part of the week, Alex tried to raise both legs up high enough to kick the bottom of the bag. He practice was noticeable in class on Wed. The instructors all commented that his kicks were much higher and more controlled. His left kick is finally turning into a real kick, as opposed to a slight movement of foot off the ground.

More importantly, Alex is gaining a sense of self-confidence over his body. The instructors are truly awesome and they praise when they see hard work and improvement. They emphasize "doing your best". For the rest of this week, Alex has been repeating what his beloved instructor, Ryan, said about his work in class, that he was improving through hard work. Alex is so proud of himself and for this reason, he loves karate and continues to practice and slowly push beyond his physical limitations.

Wednesday, September 29, 2010

Morning Track Sessions

There are 19,000 students in Naperville District 203 (west of Chicago). In 1999, the eighth grade class of Naperville, along with over 200,000 students from around the world, took the TIMSS (Trends in International Mathematics and Science Study exam). They finished 6th in math and 1st in the WORLD in SCIENCE. The average American high school scored 18th in science and 19th in math that year. Why did Naperville score so high? Why does Naperville consistently rank high in its test scores and graduation rates? According to Dr. John Ratey, in Spark: The Revolutionary New Science of Exercise and the Brain, it is primarily due to Naperville's revolutionary approach to PE. Here is a snipit of info from the book.

At 7:10am, Naperville begins its day with Zero Hour. The kids run. They wear heart rate monitors. They are graded on how long they keep their heart rate above a target. The kids don't have to be fast, but they have to put in a good effort. They run every day. Then they go to their most important classes, like math and reading and science. In essence, they flood their brain's with Miracle Grow for the brain, a protein called brain-derived neurotropic factor (BDNF), which is produced during strenuous exercise. The role of BDNF is to strengthen synaptic pathways, so that information learned may be retained. In essence, the students at Naperville are smarter because they exercise before school.

I run every week on the track of a local high school, alongside high school PE students who truly depress me. Two weeks ago I spoke with the PE teachers and suggested they read the book Spark. They both acknowledged the research, the data on the positive benefits of exercise and the brain that has flooded neuroscience in the last few years. They say their school administration knows of this research as do their staff and board. And yet, this year, they cut PE from 3 times per week to 2. The students running on the track are truly pathetic. There are only a handful who can complete a mile, let alone run it under 10 minutes. Most of them, in my opinion, are overweight. Maybe I'm a bit too critical. They certainly are not fit.

These days, Alex runs a 1/4 mile as his warmup. I take him and Izzy to the track before school, mostly because if I don't, they turn my house upside down doing laps around the kitchen island. I prefer to have them run freely in the open space of the track. Alex loves to yell out as he finishes his first lap, "I'm running so well, Mamma!" If there are any spectators, and especially if one of them makes a comment, like "nice running", Alex turns up the juice and picks up the pace, clapping for himself the whole way. Izzy prances like a foal, effortlessly moving through space. They inspire me, and their smiles make us all happy. Hopefully, when they go to school and work on reading and block building and colors, their BDNF will be working its magic. Running is clearly working its own magic on their self esteem.

I wonder how hard it would be for a school to open its doors an hour earlier, to offer the locker rooms for showers, breakfast in the cafeteria, and a volunteer staff person or two to monitor the exercise. The program might begin voluntarily. Kids who want to run sign up. They might be graded for PE. Or, they might be recognized at the annual awards banquet. Maybe as their classmates witness changes in the runners' appearances, their increased self-confidence, their higher test scores, and their bonds of friendship that only form over hard labor, the inactive ones would sign up and the attendance rate would grow. It seems like it would be worth trying. Isn't that the single responsibility of a school system, to give their students the best opportunity possible to grow, physically and cognitively--in essence to create the opportunity to run? It almost seems negligent to do anything less.

Tuesday, September 21, 2010

Thank You Perez Hilton

For those of you who follow Perez Hilton, The Baby Alex Foundation is his featured Cause of the Day at When you get to his website, just search for The Baby Alex Foundation, and you will find information on us! Thank you, Perez Hilton, for some very much needed and appreciated marketing.

The Baby Alex Foundation launched its newly designed website last week. We will email our donor newsletter tomorrow (on Alex's 3rd birthday), so if you haven't signed up for our newsletter yet, please visit the site and sign up. The newsletter is also posted on the site.

The Foundation is well into its fall fundraising drive, which includes a reception in NYC on November 11th. To donate, get more information on the fundraiser or how you might help us market the Foundation and raise money for our 2011 pediatric brain injury grants, please visit our website:

Thank you, thank you Perez!

Friday, September 17, 2010


For reasons entirely of convenience, we signed Izzy up for karate, along with Alex, who is now taking his second session. The sign-up says the class is for children 2 1/2-5 years old. Izzy is only 20 months old. I did not have high expectations for her participation, but I thought she could at least watch, and that would be more beneficial than trying to find a babysitter for her for the class or forcing her into the child care across the hall. To my great surprise and relief, she jumped right in and loves it. She needs me to stand next to her, and to run with her through the obstacle course, but that is only to provide moral support.

And Alex...he has completely come out of his shell. He was timid and shy during the spring session, but is now the first one to raise his hand for anything. He is completely focused on the instructor and the tasks at hand and no longer needs me to help him through the obstacle course. What impresses me the most is how his balance is improving. He was barely able to raise either of his feet off the ground to kick during the first session, but now can raise both of them equally well. This is partly due to his age, I'm sure, but also due to the fact that he has been practicing for his karate class. He is also challenged to kick higher and balance longer in class than he would have been at home.

Before we read about the benefits of karate to children with neurological issues, it never crossed my mind to practice punches, sticky palms, blocks and kicks to front, side and back. These movements really help Alex's balance. He is also learning when it is okay to punch and kick (in class, in self-defense) and when it isn't (at your sister or the dog). It helps to have a children-savvy instructor. Alex's instructor is excellent. He allows the children to be children to a point, and then reigns them in and asks them to focus so they may perform. He compliments them on their natural abilities and occasionally shows off his skills, which are impressive and demand respect.

Sunday, September 12, 2010

Pacticing Finishes

Although I have thought and talked about goals I achieved while training for this latest Ironman, I didn't think about how my racing might affect the kids, except to worry over whether I was spending enough time with them and giving them enough energy when I was exhausted. I didn't really see other positive effects of my racing until we got home from Louisville.

I was standing in the kitchen contemplating my missed spot in Kona, wondering if I should enter IM Florida a few weeks away to give my race another shot, while Alex and Izzy were playing around me. Then Alex said, "Mommy, hey Mommy, watch me. I'm crossing the finish line." He then ran around the kitchen island with Izzy trailing behind and he threw up his hands as he crashed into the couch yelling, "Go, Alex. Way to go, Alex. You finished!! Yay!!!" He jumped up and down and waved his hands. "I finished my race, Mommy, did you see?"

I read in the NY Times this week that child obesity is on the rise in NYC, despite efforts to lower it. I have no idea the percentage of unhealthy children who have unhealthy parents, but I would bet it was pretty high. If Alex and Izzy are active because their parents are active, then we aren't only doing something for ourselves by being athletes, we are influencing the long-term health of our children.

Tuesday, September 7, 2010

On Sleep

Sleep seems to be the cure for much suffering. It heals the body and mind, physiologically and chemically. It can also be a marker as to how much you are stressing your mind and body. If you need more sleep, you are working harder than your previous normal.

Over a week now after the Ironman, and I hardly need to sleep at all. For 4-5 days, all I could think of was sleeping, but once my body recovered, it became an energized shell of my former self. Training has pushed me into another zone of productivity, and now that I am not training with the same intensity, I am able to be more productive in my office, with my kids, in my writing, etc, on less sleep. I am back to my old routine, up at 4:30am, in my office to write until the kids wake up, then working on The Baby Alex Foundation during nap times (I used to nap with them when I was training), and then again in the evenings I back in the office to work or read after the kids have gone to bed. I am still training, gearing up for a 50K in October and a 50 miler next March, but neither of them takes the same effort as a multisport event done well.

I learn much about sleep from watching my children. On Mondays, they nap for a good 3 hours. They are exhausted from new weekend experiences, playing with friends, staying up a little too late. And when they are sick, my children nap and nap and nap. And they recover, quickly usually, unlike I did when I was training and not getting enough sleep. Night time is a bad time to teach them something new--they need a good sleep to process the days' experiences and before they can learn something new.

The one element most new long distance athletes forget to factor into their life is sleep. They can plan their day around work and training, but they forget to plan sleep into their schedule. Often, it just isn't possible, especially if there are children involved. But somehow, the body manages to adapt. I know that my health high will wear off over time and I will be back to needing 8 hours of sleep a night and not being as productive as I want to be during the day. I'll know then it's time to train for another Ironman.

Tuesday, August 31, 2010

The Day After...

Today is actually the day after the day after, because we spent the entire day after the race in the car driving back from Louisville. This morning, I woke up more stiff and tired than yesterday, ready to get into the pool to stretch and do a short workout.

I finished 19th in my age group, not fast enough to qualify for Kona. I lost the race on the run, which was brutal. Temps in the mid 90's, high humidity, the times were very slow on this race for everyone. I knew things were really tough when several of the pros walked past me, on what I thought was their second loop of the run, but which turned out to be their first loop. I have never seen so many people walk in a race before, even one this long. Still, I trained all summer in the heat of the day and was very disappointed in my legs for giving out. I walked through the aid stations, but ran the whole race, hoping to find some hidden strength that just wasn't there. It was an awesome race, despite the disappointments, and I accomplished many goals along the way. And now I am ready for 2011!

Ultra distance races are so amazing on so many levels, one of them being that no matter your performance, you can't help but smile and feel so proud and honored to be crossing the finish line, fortunate to have a body that will physically take you to the end. The day before the race, we took Alex on a trolley ride around the city, which was a thrill for him. We discovered the trolley the previous evening when we hopped on it to get to dinner. That evening there was another rider, like Alex, who just wanted to ride for the fun of seeing new sights, the thrill of the hum of the engine and to hear the bell go ding-ding. He was a young kid, in a wheel chair, with severe brain damage, obviously unable to walk or function on his own. He was with his two caretakers. My heart hurt, for the little boy, for all children with CP and for the parents who do their best to care for them. It also reminded me that no matter what, I needed to have a safe race. Alex could care less if Mommy qualified for Kona. He just wanted his mom to snuggle safe and sound in his bed when it was all over.

The crowds and the volunteers are amazing at these races. They are so dedicated to the racers, giving their energy all day to helping the athletes find the courage to keep going, even when mind and body say stop. Louisville was particularly friendly and volunteers traveled across the country to help out. Thank you, thank you volunteers! You have inspired me to do something good for someone today.

Alex and Izzy had a blast on this latest adventure. They logged miles in the hotel hallways, swam in the pool, waddled around the city of horses with great enthusiasm. They seem to have grown up a little bit over the weekend. And Erik, such a trooper to help drive, care for the kids, support my training for 9 months, and be there to hug my disappointment away at the finish line...he realizes it is a lot more fun to be the athlete than the spectator, and he is already signed up for Ironman Canada in 2011. Thank you Erik and I look forward to being on the other side of the finish line.

Saturday, August 28, 2010

15 Hours to Race Morning...

We arrived, after 13 hours of driving and a trip to Hersey World. Bike is checked, so are bike and run bags. I swam the course this morning with all 3000 of the other atheltes in the race this weekend. The Ohio River is a great place to swim, tastes like mud, but a nice 85 degrees for those who like it hot!

Weather looks to be in the mid 90's on race day, but the humidity is much less than it was 5 weeks ago when I trained on the course. Should be a beautiful day for the race. My general observation is that Ironman athletes are in better shape than they used to be 4 years ago when I did Florida. As the sport heats up, the competition is tougher and everyone is in better shape.

Louisville is lots of fun for the kids: free trolley rides up and down 4th Street, a great pool at the hotel to swim, tons of running space along the river.

I'm exhausted. My Ironman will be done when I finally line up to enter the water on race morning. Sunday should be a lovely day of doing what I love to do, without anyone calling my name ("Mommy") to tell me their poopy diapers need changing. There should be a separate race for Mommy's!!!!!

Tuesday, August 24, 2010

The Countdown

So, with exactly 6 days until the race, the countdown has begun. Six days from now at this time in the morning, I will be marked with black ink on my arm and leg, and will be watching with amazement as the pros start their powerful swim. The Ohio River is immense and intimidating, with a strong current and murky, dirty water, and watching the pros clobber it as though it were a monster sneaking out of the closet gives us mortals confidence that we can stand our own.

Alex, whose maturity level at times seems to match my own, is beside himself with excitement about the upcoming adventure to Louisville. He understand we are taking a major trip, that Mommy is going to be racing a triathlon (and that he wants to race too!), and that we will be making stops at some exciting places. We are stopping at Hersey Park, at a hotdog stand featured in Diners, Drive-Ins and Dives on the Food Network, at a horse breeding park in Lexington, and staying always in hotels with pools. Izzy, who understand less about the actual details of the adventure, nevertheless does not want to be excluded, and when we talk about it, she heads to the door to put on her Crocks, ready to go. "Ready," she says. "Not yet", I say. "We still have a couple more days." "Ready," she repeats, feeling as I do, that we might as well get this show on the road.

Short run and swim yesterday, short spin and run today, short run and swim tomorrow. The legs have completely stopped aching, my body is no longer tired, and yet, I think to myself, am I really ready, can I really cover 140 miles in a few days, shouldn't I keep training for a few more months or maybe just get in one last 15 miler or 80 mile ride, just to be sure?

One of the major lessons I have learned through long distance racing is to trust my body. Your body will perform as you have trained it, and often slightly better. If you can shut off the logical side of the brain, which tells you that long distance events are crazy, that you need to rest in case you get chased by a lion tomorrow or run out of food this winter, and race on pure emotion, you not only race well, but you also find yourself at complete peace with yourself.

Thursday, August 19, 2010

Taper Time

One of the hardest parts about training for an Ironman (or any event, really) is the taper period. After 7 months of hard training, you suddenly must slip into easy training 2-3 weeks before the big race, and then nearly no training at all for the last week. It is physically and emotionally painful. This year, I have trained harder than every before, and the taper is particularly difficult.

Four weeks ago, I started to ease off and began to sleep more. Once I started sleeping, all I could do was sleep, but with two toddlers, that wasn't really an option, so I really spent my days in a fog. Then the legs started aching. They ached at night, in the morning, and pretty much all day. I began sleeping with a pillow between them, but that didn't help much. After the sleeping phase, I moved into the anxiety phase, and wasn't able to sleep at all. Every dream was about the race, and I woke up exhausted (wasn't I supposed to be getting extra rest???).

My metabolism was still jacked high, so I got away without changing my diet while easing up on my training...for about two weeks. Now, with less 10 days of tapering to go before the race, I have had to make a major shift in my eating (no more Chinese food!), so as not to put on any (more) weight than I did in the last few days.

But the hardest part is refraining from going out for a long run. I miss the solitude, the effort-induced pains that melt into a comfortable stride, the feeling of relaxation when I return, exhausted, and the deliciousness of the first sips of water. I look forward to race day, to the chance to test my mind and body, four years wiser and older than the last Ironman. Am I better this time, or just older? I know my mental edge is much, much stronger. I also look forward to the day after the race, when I can wake up and do whatever workout I please, not worrying about pace or proper nutrition. I might take that day off. Or maybe, I'll lace up shoes and sneak out at sunrise and hobble a short distance, for the peace, the quiet, the secret I keep with the start of every day. Only a few more days and the taper will be over.

Monday, August 9, 2010

The Annual MRI

Last week, Alex had his annual MRI. It has actually never been an annual thing, because there have been complications and emergencies and further brain surgeries, but this year, we hope it will be an annual one. No more Christmas Eves spent in the ER. No more canceled birthday parties for brain surgery. We hope.

Alex demonstrated extraordinary strength at the MRI. He will be three years old in September, so right now, we say he is two and a half. He would have been born in January if he had been on time, so his age is sort of true. One of the great traumas of the MRI is the anaesthesia. It is painful to have the needle stuck into the vein, and then to sit there often for hours screaming uncontrollably while waiting for the MRI to be free, and then to fall asleep with medicine, and wake up confused, not knowing what just happened, and to have to sit in the recovery room for over an hour, hungry and unhappy, and then to fall asleep in the car on the ride home and be cranky until the next day-the whole ordeal is pretty horrible. But the anaesthesia is usually necessary to keep a child as young as Alex still while the MRI--loud and scary--takes its pictures of the brain.

So, last week, we just happened to have an amazingly astute nurse. I mentioned that it was too bad they wouldn't even consider letting Alex try sitting in the MRI without anaesthesia. She commented that it was too bad, but they don't usually even consider it until children are four, and then you have to make an evening appointment and come back the next day if the child freaked out during the procedure. Then she left the room and returned in 5 minutes, excited and in a hurry. Someone in charge had agreed to let Alex give it a try.

Alex had to sit for at least 15 minutes, lying down on his back, within the tunnel of the MRI, without moving a muscle. He could not turn his head or talk or roll over. The nurse gave him goggles to watch Blue's Clues, his favorite show, and then strapped him in. The MRI started, and he just sat there, mesmerized by the show, despite the extremely loud and grating sounds of the machine. Erik and I held his hand and our breath. In the end, he did it! When they wheeled him back out of the MRI, he asked if he could watch Thomas the Train.

After checking the dial on his shunt, we went home, a full two hours ahead of schedule, minus the trauma, and with a happy child in our back seat. We are so very thankful for good nurses. Her decision to give Alex a chance without anaesthesia made our day, changed our entire vacation (we were on vacation in NH that week) and will likely change the next few years of MRIs.

Wednesday, July 28, 2010


We've had a tough emotional week this week, with Mommy being away to train and Alex's next MRI (next week) hanging over our heads, and at times I loose sight of my goals, my reasons for racing and training, and even the things that I love most in the world turn to chores. I picked up a book for my trip last week and highly recommend it to anyone needing some end of season inspiration.

The book, Going Long: Legends, Oddballs, Comebacks & Adventures, The Best Stories from Runner's World has some awesome stories in it. There are two passages that were so beautifully written, I am adding them here.

From Benjamin Cheever (son of my dad's favorite author, John Cheever), about training and completing his first marathon:

"Joy changes the landscape. My old life began to loosen around me like somebody else's shell. I felt naked, exposed. I had flashes of ecstasy, but pain was also more available to me. Not just physical pain either. I was swept with waves of remorse. And, alarmingly, I also felt the stirrings of ambition. I'd stumbled into an arena where I could go all-out, holding nothing back, and nobody--nobody--could be injured or even threatened...Life is a miraculous undertaking if you're paying attention."

And then a quote from Olympic marathoner Don Kardong on running his first 50 miler, Le Grizz. He is about to start the race (which he will win in under 6 hours, incredibly) and he looks around at the other lean bodies around him, shivering in the cold, dark morning. "Above them, the eye of the moon blasted its icy light across the wilderness, promising nothing but indifference of Nature to human dreams."

And then another quote, somewhere around mile 45 as he remembers the advice of a friend, "It never always gets worse. Eventually something will get better."

"Perhaps the attraction of ultrarunning lies in the simple distillation of this: the ability to envision a distant goal--another time and place when things will be better--and to survive the worst until then. This vision embraces both the survival instinct that unites us to other creatures and the imagination and willpower that catapults us above them. 'I will make it,' says the determined mind, and the body grows convinced."

We will get through Alex's MRI. Last year, the annual MRI revealed to us that he had to have another major brain surgery. This year, we hope for better news. But no matter what, we will get through it all. I envision a distant time where things will be better. After the Louisville Ironman (and Hawaii? one can only hope...), there will be a 50k and then a 50 miler...there will be lots of time to ponder upon Nature's indifference to human dreams, and to fulfill those dreams regardless.

Inside the 5 Week Window

With less than 5 weeks to go until race day, my training has been in full swing. Last week I spent a day riding and running the race course, and found that it is both hilly (who told me it was flat???) and extremely hot (heat index 105 degrees). In this heat the first thing to go is nutrition. It is hard to balance nutrition on race day in any Ironman, but when you add an extreme condition, or extremely difficult course, everything gets turned upside down.

Last week, by the time I hit the run, I was completely unable to consumer solids. In fact, on the bike, I ate only one powerbar, some cookies, some salty peanuts, and began drinking coke at mile 80 (I usually don't start on coke until mid way through the marathon). I drank an entire 2 liters of coke and lots of other fluids. It is going to be a very challenging race.

The great thing about training on the race course is that you mentally prepare for the actual race, rather than the race you thought you would be racing (where did those hills come from???) and you recognize your weakness. My great weakness (here's a gift to the competition...) is going to be the run in this race, which will most likely take place after a hilly hot ride, under a still unrelenting sun. So, I am altering my training to prep for this. I also found that walking through the aide station does give you a little time to get yourself together for the next mile. I may have to incorporate that into the race, which I don't usually do.

If any of this blog's followers are racing in Louisville, you still have a couple more weeks to condition yourself for the heat. I have heard from other racers and it seems the greatest problem this year in these long races has been the heat, and the resulting poor hydration and nutrition that accompanies it.

Monday, July 19, 2010

Casting Alex's Arm--Contraint Induced Therapy

Last week, Alex had his right arm casted. Since his right arm is strong and very capable, it does all the work for the left side, disabled by cerebral palsy. Despite therapy and all the work we do to every day to work that left side, we have reached a plateau. Erik and I knew it was time to take more drastic measures, and we researched constraint-induced therapy. The idea is that constraint is placed on the part of the body that is capable, therefore requiring the disabled area to work.

From the moment Alex sat in the doctor's office getting his cast, his left arm started to work. The doctor handed him object to hold to help entertain him during the casting, and "lefty" took them willingly. In the past, "righty" would have jumped in and not allowed lefty to play. After one week, we see tremendous progress. The hardest thing for Alex right now is eating with a spoon or fork, because lefty turns outward and has a very hard time grabbing anything as small as a utensil stem. But, with work, he is making great progress. He is also eating with his left fingers and reaching in all directions for his toys. The cast is removable, so we take it off during bath time, in the pool, etc. Everyone we know is signing the cast and although he occasionally complains that he wants to take it off, he is proud of his cool cast that has gotten him lost of attention.

I understand many parents would fear their child might completely reject the idea of wearing a cast, but children really do get used to things, even when they are uncomfortable. Seeing the progress Alex is making is all the encouragement we need to work with this therapy until we feel he can stop wearing it. I expect he will have it for many weeks. We had hoped to also use another form of treatment using botox injection in the muscles of the disabled arm, which deadens the nerve endings for about 3 months, to allow Alex to better use that left arm, but have read FDA warnings against using it. We will speak in depth with his doctor about this.

Tuesday, July 13, 2010

Taking it to the Track

If you have lost your motivation to exercise, spend a few minutes watching someone's kids (they don't have to be your own) run. Children run for the pure, unadulterated joy of the feeling of movement. Alex and Izzy run constantly. They only stop when hungry, thirsty or distracted by something they need to bend down, pick up and analyze. With hot summer nights lasting well beyond usual bedtimes, we often take our kids to the track to run. They need an after dinner activity that will wear them down before bed, and the track, fenced and wide open, is safe, it's open expanse inviting to all to just start moving.

At their first track meet of the season, Alex and Izzy ran their 60 meter races (Izzy in the 2 and unders, Alex in the 2-3's) and then ran some more. Alex jumped into the 6 and under 400 meter race and finished the entire 400 meters on his own! The more they run, the better their balance becomes, and the more they seem to love running. Not only are they feeding their brains with BDNF and other cell and synapse stimulating chemicals, they are forming good exercise habits that should follow them into adulthood. They also inspire their parents, and anyone who watches them run on a hot track with huge smiles on their faces.

I had a miserable high school track experience. I was kicked off my track team twice (the first for running the Boston Marathon during our spring break, which angered my coach, and the second for not showing up for a state qualifying race which I blew off during a moment of bad adolescent judgment when I justified my actions that I had already qualified for the state meet, which I never ran after being removed from the team). I also broke our school records for the mile and two mile during our first track meet. My coach was a complete jerk. Not surprisingly, he still coaches my high school team and continues to make otherwise promising athletes miserable.

If you had a similar high school experience, or simply looked at the track as a hot, painful place to run, you might try returning to it as an adult. Life's painful lessons may have knocked the track into its rightful place, as your friend and no longer a fearful beast. And if you need any extra motivation to get to the track, bring a toddler with you. The pure happiness they exhibit, running freely within the immense, open space of a track and football field might just get you jogging. And if you "forgot" your running shoes, go at it in bare feet, your aging aches will ache less.

Wednesday, July 7, 2010

It's Hot!

You either love training and racing in the heat, or you don't. I am convinced we can improve our tolerance for the heat, but we are born programed either to perform well or not in the heat. In Arizona last month, running trails in 95 degree dry heat, Erik overheated and I barely broke a sweat. This week, with the heat index above 108 degrees yesterday, even my heat tolerant body faced a challenge. Training for my Ironman in this weather is challenging but hopefully good prep for the actual race which will take place in the hot and humid heat of Kentucky in late August.

Alex and Izzy, like all children, do not do well in the heat. They have their first track meet of the year this week and the temps will be in the 90's, even at 6pm. We will go from the track immediately into the pool to cool off. Lots and lots of fluids all day and frequent dips into their blowup pool will help prep them for the race itself. It will be fun to see how far Alex has progressed from last year, when he was just barely able to walk without assistance, but had to run holding my hand. We raced together. This year, with both kids old enough to participate in the 2 and under category, and neither needing my hand, it will be fun to see how they perform, side by side, running down the 60 meters of track.

Tuesday, June 8, 2010

The Rev3

The Rev3 Half Ironman, held last weekend at Quassy Amusement Park in the hills of CT, is by far the most difficult half I have ever raced. You are either going up a hill or down a hill on the bike and run, and both become painful after a few hours. The last mile of the race is uphill, and it was at that point that I decided the race organizers are just mean. It was hot and it was humid, and I loved every minute of it. I have long since ignored the physical pain of training and racing, since it is, after all, self-induced and so should not be fretted over, and try to focus on the fact that the more I work my body, the stronger and leaner it becomes. On Monday morning my scale tipped down a couple pounds and I felt a little more bad-ass than I had on Sunday morning, and so the hours of hill climbing was all worth it.

It was also the first race I have ever run where I had no family there to cheer me on. I thought about this a few times during the bike, and realized how fortunate I have been in my life to have people to care enough to come watch these long races where you get to glimpse your athlete for a few minutes at transition and then spend hours in the hot sun (or rain!). Thanks Mom, Dad, Erik and Molly (my sister-in-law who cheered me on at the Ironman for nearly 12 hours). I hope Alex and Izzy will find themselves one day, long into their middle age, where they are racing alone and realize it is the first time to be without a cheering squad and be thankful for the love.

Thursday, May 20, 2010


Finding a sport that Alex enjoys has been challenging. His balance is so poor that he is intimidated by other kids running at him and balls coming at him, and with his weak left hand, it is hard to hold a bat or tennis racquet. Soccer is tough for Alex, but we recently discovered that if he holds my hand and I run with him around the field, providing him with balance, he has no problem running, kicking and shooting the ball. He and the other kids are young enough that having mommy hold his hand is not embarrassing. I hope that by the time he reaches the age where he would be mortified to have his mom holding his hand during soccer practice, that he will have more balance.

We were very happy to recently discover that karate is not only a sport he can excel at, but which works all of his disabilities. At this age at least, no one touches you in karate. You use flat open hands and kicks and blocks and chops all against a soft pad, at your own pace. Again, I have had to hold Alex's hands through many of the lessons, especially the obstacle course they run through each day. He can not walk on the "ninja rocks" (mats) by himself and needs a hand to hop through the hoops, and needed much encouragement to enter the tunnels. But, the exercises, coupled with the time the instructor spends on discussing important topics like honesty, integrity, respect, patience, and listening are all very worthy of our time. As soon as Alex's sister, Izzy, is old enough, we will enroll her too. I hope they love the sport, and that we can learn karate together.

Wednesday, May 19, 2010

Physical and Occupational Therapy

The question of whether or not to seek professional physical and occupational therapy for a child with a disability is one that his parents often ask themselves, and one that gets asked repeatedly by doctors, neighbors, friends, strangers. Erik and I were all for professional therapy in theory, before Alex came home from the hospital, but began to question its place in his developmental program once we actually experienced it. The type of therapy, duration (how many minutes can a child do therapy at one session? how many months or years should the child continue in the therapy?) and whether it should be conducted by a professional or at home, or some combination of both, depends on the child and the disability, and on the ability of the parents to provide therapy at home.

After several months of Birth to Three, we found the sessions to be somewhat instructive to us as parents, providing us with ideas of new ways to challenge Alex to use his disabled hand and foot, but the 45 minutes sessions once a week were not, in and of themselves, that helpful to Alex. The therapists who met with Alex were very nice, and knew their stuff, but they just didn't do much that we weren't already doing. The sessions often cut into nap time, or meant staying home from the beach, or not going to Grandma's. And when Connecticut presented us with a $50/session fee, we opted out.

A year and a half later, we began to ask ourselves if we should find professional therapists, ones covered by insurance, to be sure we were giving Alex every opportunity to exercise his hand and foot. We asked ourselves this question because we were barraged with the question by pretty much everyone who met Alex, and we got that same disapproving look by many when we said, "Uh, well, we do our therapy at home." To many, I realize it sounds like, "Uh, well, we can't be bothered with his therapy," which is about as far from the truth as a comment could be.

So, we rationalized that you never get another chance at the age of 2-3, an age when the brain is going crazy to develop, and we should be positive we were not missing something in Alex's therapy. So, we found good therapists and enrolled. But the other day, as Alex worked on Mr. Potato Head with his therapist, I wondered why for the $30/session we were paying for these services, the hour we drove, the $25 we paid for the babysitter for Izzy or the time we spent entertaining her at the therapists' office, I couldn't just pull our own Mr. Potato Head out of the toy box and work with Alex at home. True, I had not looked at Mr. Potato Head as a therapy tool, but as we experienced with Birth to Three, the greatest benefit from our professional sessions was what we took away as parents--new ideas for home play.

There are three good things about professional therapy. First, they provide parents with new ideas for therapeutic play. This is a big benefit, but I wonder why we can't just find descriptions of therapeutic play in a book or on the internet (maybe I haven't searched hard enough). Second, children often respond more positively when challenged by a stranger (therapists) than by their parents. Alex is a very agreeable kid, so we don't usually face this problem. Finally, professionals have all kinds of toys and tools appropriate for the child, depending on the disability. In our case, we have most of those same toys at home, in some form or another. We do not have a ball pit, but we do have swings, balls of all shapes and sizes, pegs and pegboard, blocks and shapes, tunnels for crawling through, and we do own Mr. Potato Head.

And so, with some new ideas in hand, we will again stop professional therapy this summer. I don't advocate at-home-only therapy for everyone. It takes dedicated parents with access to the ideas, patience and a few tools to be effective. It also depends on the disability of the child. There are therapies that simply can not be done at home. But therapy at home works best for us, and it has become a part of our lives. We don't eat, drink, bathe, play, read, walk, run, swim or do pretty much anything, without working Alex's left hand, foot and balance, encouraging his independence and self-esteem. Our lives are one long therapy session, much more effective than 20-30 minutes with a professional. But on the other hand, in another year, maybe we will need to refresh our ideas with the pros.

Monday, May 3, 2010


When I was pregnant with Alex, before the kick, before his premature birth, before months of his hospitalization and doctors telling us he might never walk, Erik and I used to talk about coaching Alex's 3 year old soccer team. We assumed he would love sports as much as we do and would want to play soccer as soon as he could. So, this spring, we signed him up, even though he is only 2 1/2 and his balance is so poor. We figured, why not.

Last weekend, he had his first practice. All week he talked about soccer and meeting his soccer coach and the fact that he and Daddy were a team and he was excited to meet the other kids, especially since he doesn't have much interaction with kids his own age. His first practice came on a sunny day, and he could not wait to get there. Once on the field, he did his best to follow the coaches instructions and try to balance well enough to dribble the ball, and stop it with his foot (holding Daddy's hand for balance) and to be part of the little scrimmage the team had. It was hysterical, watching all the little kids scurry around after the ball, get distracted by butterflies and sippy cups, then wander back into the game. For Alex, it was a blast. For us, it was a dream fulfilled.

This past weekend, it was hot and Alex wanted to swim, not play soccer. Several other kids felt the same way and the whole team kind of drifted off the field in many directions. But it was so much fun, just to be out there again, with all these little characters.

My training is taking off. With less than four months to the race, we are building distance. Three hours on the bike Saturday morning before soccer practice. A long run on Sunday. It is extremely hard to fit it all in. I'm up at 4:30 to have coffee and some calories before jumping into my workouts. I know I'm not alone, whether it's someone's dedication to a sport, to a career, to an art, there are sacrifices to make, but they are worth it.

Wednesday, April 28, 2010

Training Camp

Time for another training camp!

When: May 14-16 (Friday swim, Saturday Ride, Sunday run)
Where: Ironman Lake Placid course
Who: Run by my coach, Matt Giunta, and open to anyone

Training camps are one of the best places to push yourself outside your comfort zone and make major strides in training. Every chance that I have to join a training camp, I jump at it. In February, I pushed myself to do two 80 mile rides, early in the season, which not only improved my endurance but gave me a lot of confidence. I also learned a tremendous amount from training in person with my coach. Over the years, I have made friends at training camps who have remained friends ever since. If you are a triathlete, join us.

To sign up for the training camp:

Tuesday, April 6, 2010

Vibram Five Fingers

Since reading Born to Run by Christopher McDougall, Erik and I have become devotees of the running barefoot movement. We are slowly training our feet and legs to adapt to running without running shoes. We don't run with naked feet, of course. We run wearing a pair of the Vibram Five Fingers. With tough rubber soles and little cuffs for each of your toes, these shoes protect your feet from rocks and glass, while giving your feet the freedom of running without padding. The transition to barefoot running does not happen overnight. There are all kinds of muscles in your feet and calves that need to be retrained. But running barefoot allows your foot to naturally find the ground, land and maneuver to provide your body support, and forces you to take shorter steps which land you toward the front of your foot (rather than striking hard on the heal). This whole process of natural running is much better for your body. Since running barefoot, the pain I had in my hips has completely disappeared from the left one and lessened significantly from the right. I am told that for people who suffer from heal spurs, running barefoot will solve their problem. If you have no idea what I'm talking about, read the book, Born to Run. If there are two books you need to read in your entire life, Born to Run is number one. I grew up running trails, and went several years without running on roads for more than a quick trail connection. I have sought out trails all over the world, from the remote forests of Tunisia to the well groomed track along the Cinque Terra coast. In recent years, the lack of trails where we live has necessitated road running. We read Born to Run this winter and have begun a new search for trails in our area, which means driving an hour or more for the best runs. We bring power bars, a diluted sports drink and wear lots of bug spray. You feel so light in your Vibrams, and so far from the rest of the world in the middle of the woods, it is a good chance to reconnect with the earth and your partner. We are even tempted at times to run naked.

Oh, and the second book on your life's must read list: Jack Canfield's The Success Principles: How to Get from Where You Are to Where You Want to Be.

Thursday, April 1, 2010

Running with Alex

Today was a monumental day. Alex and I went for our first run together. Alex has been talking for weeks about how Mommy runs on a team and Matt is the coach and how he wants to run on a team when he is a big boy. And then this morning, the sun finally came out after days of relentless rain, and so Alex accompanied me on my morning walk with the dog, Teds. Alex was wearing his little crocs. He held my hand and begged me repeatedly to go for a run with him. So, we dropped Teds off at the house, and went back out. The sun was breaking through morning clouds over the ocean where we live, and the birds were singing, and it was truly a beautiful morning to be out. And so, we ran. Alex held my hand because he trips frequently and needs the support. I jogged and he moved his little feet as fast as he could. We went two blocks, stopped to catch our breath and then turned around (reluctantly, because he wanted to run on and on), and ran the two blocks home. Alex kept a running monologue of everything going on around us, telling me about the birds singing and the occasional car driving by and the presence of grass and trees. He was breathing hard at the end and I carried him up the deck stairs to the house. His face was flushed and he was all smiles. He was so proud of himself for going for a run with Mommy. We will make this our new morning ritual. This isn't my only workout for the day, but it was by far, the best run I have ever had.

Tuesday, March 23, 2010

The Oatmeal Mountain

Alex invented a nice game this morning, which we call The Oatmeal Mountain. Since he loves to cook, and wants to feel and taste every ingredient, I let him place handfuls of oatmeal into a pan this morning for breakfast. Then I gave him about a 1/2 cup into a plastic bowl. He sat on the floor for about thirty minutes, dumping the oatmeal out of the bowl, then gathering it up into a little mountain and then picking up handfuls to put back into the bowl. This is a great exercise for any child with a hand disability. To use his disabled lefty, he had to reach across his body (good for balance and reach), grab with is fingers (good for strength of his hand and fingers), then reach again to put his left hand over the bowl, and then open his hand (good for flexibility, strength, coordination) to drop the oatmeal into the bowl.

He loved this game for many reasons. First, the feeling of oatmeal in his hands was a new feeling. It undoubtedly stimulated his tactile sensations and fired some new synapses in the brain. Second, he was successful at the game, which is important to keep him interested. Alex gets frustrated when he can't accomplish a task with his left hand, and this task was foolproof. Oatmeal naturally stuck to the moisture on his hand, so it was easy to pick up and when he opened his hand, some of it naturally dropped off into the bowl. He loved his accomplishment. Finally, Alex loves to "clean up", an important habit to teach a two year old. When he can be helpful, he feels good about himself, and he learns to take responsibility for his own toys and games. The act of grabbing the oatmeal and dumping it back into the bowl was an act of "cleaning up". When we were finished, we cleaned it all up. I swept and he held the dustpan and then walked the dustpan carefully over to the trash to dump it. This was a good morning activity on a rainy day.

And as for my oatmeal is an easy spin day. My weekend workouts are getting progressively longer and harder, so an easy Tuesday spin is a welcome rest for my legs.

Tuesday, March 9, 2010

The Beach

The beach is the single best place for children. They can run and roam and explore and throw things and make messes and get dirty and no one gives them directions or scolds them or asks them to put away their toys. They enter their own world and grow from all they experience around them. For a child with CP, the beach offers even greater benefits. For Alex, the beach has meant a peaceful, quiet setting to think. The sound of the waves has lulled him into long and deep sleeps for countless naps. Alex usually walks barefoot in the sand, which provides natural stimulation to his left foot and uneven landscape to help improve his balance. He throws rocks for hours and hours, and on occasion, will generously pass a small stone from his right hand to his left to allow lefty a toss. Together, as a family, we have watched the sun rise and set, discussing the colors we see in the sky and the shapes of the clouds. We listen for boats and air planes and seagulls. When the water warms up, Alex will wade in as deep as he can safely go and then splash around with my help. Water therapy. Soul therapy, for all of us. Now that Alex's sister, Izzy, is 14 months old, she has begun throwing rocks, too, learning quickly all the skills Alex has laboriously acquired in his 2 1/2 years.

We have been fortunate to have had beautiful spring weather this week, and many adventures at the beach. I used to run on the beach, but it puts stress on my ankles and knees, so I save my running for the road and trails. This weekend, Erik and I tried our new Vibram Five-Finger shoes, which allow you to run basically barefoot while offering thick rubber protection for your feet. We are new converts to the idea of barefoot running. We ran 65 minutes on Sunday on trails with no side effects from kicking off our padded running shoes. The book Born to Run turned us on to the idea, and we may never look back. I may even do my Ironman barefoot.

Thursday, March 4, 2010

Team Baby Alex Foundation Florida Training Camp with Blue Shift Multisport

I will be racing this season with our foundation's racing team, Team Baby Alex Foundation, and it was as part of this team that I attended the Florida training camp.

The training in Florida was pretty intense, and I consider it a bonus to my training since we were able to pull it off so early in the season. I sometimes envy my friends who live in warm climates for being able to get out on the road in the winter. We New Englanders have to be patient and learn to train hard indoors during poor weather seasons. We cross country ski and snow shoe in the winter and pretend we enjoy the cross training, but what I really want is an open trail in the dessert on a hot dry day where I wear the bear minimum and lots of sunblock and come home after hours on the trail with a dark tan. It has been a particularly cold winter out here in the east.

Coach Matt founded and operates Blue Shift Multisport. To see his website, visit He offers all kinds of services, including one-on-one coaching and has a blog and a radio show. This week in Florida was my first time training with him in person. He is not only a nice guy, he is truly a great coach. My tendency, especially when I am training with athletes better than I, is to push, push, push to the point of exhaustion. Matt's approach is to training smarter. We combined drills, with photos and videos to analyze and then examined the reports from my PowerTap wheel, HR monitor and cadence sensor, and we approached everything with a very precise, focused effort. We did three long rides, to include two 80+, and one followed up with a 4 mile IM pace run. We had many hours to talk about our triathlon experiences and as always when training with someone better than me, I learned from just listening.

Back home now, the weather still stinks. We all have spring fever. We take the kids outside every day, no matter what. I bundle them up and let them get wet or snowy, and then bring them in for a hot bath and warm feety pj's. Izzy, now 14 months old, has mastered walking, running and climbing stairs. She zips up the stairs leaving Alex behind, and already I am worried how he will handle his sister surpassing him as he ages. He will start playing 3 year old soccer in April and we plan to start him in karate this fall. We recently read a tremendous book about exercise and the brain, called Spark: The Revolutionary New Science of Exercise and the Brain, by Dr. John J. Ratey, MD. It should be a on everyone's must read book. It is all about how exercise (meaning, getting your heart rate up!) regulates neurotransmitters (meaning, regulates your mood, ability to handle stress, increases your attention span) and increases a protein called brain derived neurotropic factor (BDNF), which improves and strengthens synapses. In other words, exercise makes you smarter, happier, less moody, less depressed, and physically more capable. It helps children with all kinds of disabilities. Some activities, like karate, are especially helpful to children with disabilities because of the focused movements.

Wednesday, March 3, 2010

The Road to Kona: Our Beginning

Kona, Hawaii, location of the first and greatest Ironman triathlon in the world, is a dream for me. Getting there, that is, as a qualified Ironwoman. I’m 39, and will be racing in the 40-45 age group this year, racing Ironman Louisville, to qualify, which means to win my age group. When I was 17, I asked my parents if I could hire a coach, because I thought I could be a great runner. I was a good runner then. I wanted to become a great runner. They said no, and had plenty of reasons to support their opposition to the idea. One was that they did not believe I would be a great runner, or that spending money on a coach would help me to become one. Their comments sunk into the subconscious and spent 22 years floating around, allowing me to be a good runner, a good triathlete, a good student, a good mother, and good at pretty much everything. But never great.

So, I have hired a coach. I have restructured my subconscious. I dream in great these days, not just good.

But I did not do this on my own. I had help. I had Alex, and it has been Alex’s personal struggle, which has instilled in me the belief that truly anything is possible, no matter the odds, no matter the prognosis, no matter what anyone else believes. What do you believe? I believe I am a world class age group triathlete. And I believe that Alex will run normally one day, which is to say, he will accomplish his own Ironman. In fact, I believe he will run an Ironman one day. I believe he will make it to Kona, as a qualified athlete.

Alex and I are on our own personal journeys to Kona. This is our story.

Alex is my son. He was born prematurely, at 26 weeks, weighing 1 pound, 15 ounces, as a result of a kick I sustained from a horse. In the early days of his life, due to his low birth weight, blood vessels in his brain burst, causing serious and permanent brain damage (Grade III and grade IV bleeds). He has Cerebral Palsy, which disables his left side. He can walk and run, with difficulty, and he has minimal use of his left arm and hand. Through work, practice and therapy, he has gained significantly more use of his left side than we initially thought possible. In honor of Alex, my husband, Erik, and I founded The Baby Alex Foundation to raise money for pediatric brain injury research. To view our site, visit us at

But for Alex, every task is complicated. He approaches life right-side oriented, which means his left side is only an afterthought, a compliment to the strength of his right side, a crutch to lift his sippy cup, a post to lean on when his right leg is tired. Climbing stairs is a chore that requires great concentration, and coming down stairs is an even greater challenge. Even picking up a spoon to scoop cereal is work. Alex’s sister, Isabella, only 13 months old, is catching up quickly and will surpass Alex in both fine and large motor skills, within the next few months.

Fortunately, Alex approaches his daily tasks with a cheerful, ever present smile, determination and complete confidence that he will achieve whatever he sets out to do. For Alex, arriving at Kona, which he may do some day when he is old enough to enter the Ironman, means simply acquiring the ability to swim, bike and run on his own, without help, training wheels, flotations. Alex’s Kona is not an island in Hawaii, but his entire world.

And for me, the dream is to see him grow, learn, achieve, and be completely independent. My secondary dream, is to race Kona in his honor this year. And to race it with him, twenty years from now.

And so I will describe our journey, my constant push to become fit and lean, and Alex’s constant push to overcome his disabilities.

January 2010

In January, I started my training. My coach, Matt, has me focused on my spinning. We both believe that winter training is where the Ironman is won or lost. I got professionally fitted on my bike, and ramped up my training significantly, not in time, but in intensity. This week, we added the swim, just a gradual re-introduction to the water, with lots of pulling and kicking. I had built a solid swim base from October-December, but then had to have an ovary removed, which meant a week off from working out and then another week of slow moving. And then in December Alex had another brain surgery, which meant a couple weeks devoted to him. Not much sleep. Lots of worry.

In January, once Alex’s head had recovered to the point where we could introduce him to the water again, we started up with serious water therapy. He has always loved the water, and we encourage long baths and lots of bouncing around in the summer. This winter, we have started doing therapy in the tub. We make things up as we go along, and practice what works and what he enjoys. I cut up sponges for the tub, which he loves. Lefty has to squeeze the sponges, of varying colors, and throw them as far as he can. In the beginning, Alex’s hand was unable to open to release the sponge. He had to have righty grab it and throw it, which we allowed initially. But with practice, Alex began to learn how to let go. He started simply dropping the sponge, and then later, tossing it a few inches, and finally, he got in a few good throws and then a few more. This game has become part of our daily baths. He loves it. We also have cups in the tub, large ones that require two hands to pick up when full. Lefty has to help out. We remind Alex to open his left hand, and not leave it balled up. He gets it, and although sometimes he gets frustrated and doesn’t want to play, he usually comes around and uses both hands. He dumps the water into a wheel that spins.

In the pool, Alex is learning to use his left hand to splash, to hold onto the side of the pool, to balance, and to reach out and grab his little orange ducky. He is also learning to put his head in the water, sideways, backwards, and to blow bubbles. We rock him on his back, back and forth, and we make him kick both legs when on his back or stomach. Some days he just wants to jump off the side repeatedly, or stand on the steps and splash. Some days he feels good about putting his head in, and other days he doesn’t. We move at his own speed.

January 26

My new philosophy is that when my children are sleeping, I need to sleep. No matter how much work there is to do on the foundation or dishes to clean, I need more sleep. Training for an Ironman with any seriousness requires additional sleep. And good nutrition. Since I have been eating better, logging everything I put into my mouth with an effort to cut out sugar and lower my caloric intake (I need to lose 15 pounds!), I have had more energy. But, there are limits to how good nutrition can help. My bottom line is that I need more sleep. My coach believes strongly in the importance of rest days, and so they are worked into my schedule. This is new for me. In the old days, I often went months of training without a day completely off. I don’t sleep well, because Alex doesn’t sleep well, and so we have to implement ways to enable me to get sleep. The best way to do this is first, to get the kids on the same napping schedule, which we have finally been able to do, and then for me to put my head down. I don’t always fall asleep, but I rest and sometimes I do sleep. I hope in time I will actually fall asleep. Today, I might have slept for 45 minutes, which is great for me. I feel better already.

I have also had a talk with Alex about sleeping better at night. I told him that if he wakes up, he needs to think of something nice and go back to sleep, without crying and without calling for mommy. Last night, our first night at this, he woke up twice, started to cry out and then caught himself. He actually understood the discussion and tried to implement it. At 4am, he called for Daddy (a first!) because he wanted water. We also have been teaching him to read the clock and he gets that he needs to stay in bed until 5am. He was up at 5:01 this morning.

Today Alex found a new game, which we use to strengthen lefty. He loves flashcards of any kind, especially the alphabet ones. He has some large ones that go with a book about Courderoy Bear. He loves to dump them and then to clean them all up in a pile, by handing them one by one to Mommy. Today, I asked him to let lefty do all the work. Righty still grasped the cards from the floor, but then passed the cards to lefty, who then reached (!) and handed them to Mommy. The grasp and reach is very important.

In the tub today, we are going to play with colored soap, which squeeze out of crayons. I found these in Stop ‘n Shop. I sometimes take a stroll down the baby aisle, even though the stuff if very expensive, and once in a while I find something fun like these crayons for use in the tub. Alex is way too messy to play with real markers or paints in our house, and we are waiting for summer to take it outside, so we stick to things that can come off our clothes, walls and floors. He loves chalk, wet brushes, food (like chocolate sauce and melted ice cream) and now these soap paints. We will see what he and Izzy do with them in the tub. I am also going to introduce a scarf into our music time. Alex and Izzy love music, and using a scarf, trailing it into the air and around the body, helps work not only both hands, but both hemispheres of the brain. This cross the body motion is super important for his balance and development. It can be hard to find fun, challenging games that make him perform this motion, but I think a scarf and music will do it. I got the idea from a music class I saw advertised. The class, by the way, cost hundreds of dollars per 6 week course, and I thought, wow, why pay all that money when you can do these things at home? Of course, Moms like to meet other Moms, but I prefer to save money where I can do the same things at home. We can add a playdate element to it if we want.

Alex’s new brace cut off the top half, and now looks only like a shoe. The top half seems to have been immobilizing his ankle too much and his ankle was not strengthening as it should. Now there is more movement and I think that is helpful. His big toe still seems to press itself against the food, as he grips the floor with it for stability, to we have a velcrow attachment coming in the mail that will pull his big toe over where it should be and force him to balance without that crutch. We are also now considering when we should cast his right hand, to force his left hand to work.

January 27

The scarves worked well. It is funny how you plan something and then your kids find a new way to use things you had not thought of. As we played with the scarves, both kids started hiding their faces behind them and playing peekaboo, and then Alex pretended like the scarf in my hand was a bridge and his went under it again and again (something we have worked at as he was scared to go through or under anything initially). The colored soap markers worked well in the tub, but proved messy as they do stain things. The tub water turned an unsightly color, but they smeared it all over and had fun with it.

My workout today was a 5 miler on the track, 9 minutes at marathon pace (8mm) and 1 min of walking. Then a 2000m in the pool. I felt good. I have been wearing my down vest and ski mittens and hat to recreate the heat of Louisville. So, I was sweating, but it was nice not to feel cold. I have lost about 4 pounds since taking better care of my diet. As my workouts start to increase, I hope to maintain my eating habits and lose some more weight.

February 11

The hardest part about this training is keeping up with the journal. We have discovered some great new exercises for Alex’s left hand. We purchased some very bright, large leggo like blocks. Alex has medium interest in building with them, but he loves to dump out the bag and then put the blocks back in. The blocks are the perfect size for lefty. He can grab and let go of them without great frustration, and it is a great strength exercise for his left hand.

Another exercise we have been doing is to watch what objects sink and what objects float. We use ice cubes, veggies and piece of fruit. Veggies like broccoli are easy for lefty to grab, pick up and drop back into the bowl of water. Lots of fun. We do it in the sink to minimize the mess.

We are also doing a lot with cups in the tub. It is a great way for kids to learn to “drink” out of cups without the mess of spilling. Big and little, Alex must use lefty to pick them up and manipulate them.

Our greatest success this week is the tennis ball. Grandma found an old racquetball racquet at the dump for $1, and she gave it to Alex, who was thrilled to get such a large and manipulative gift. We hung a tennis ball from a hook in the ceiling and now he hits the ball repeatedly with the racquet. It is a fantastic way to get him to move his arms and hands across his midpoint, helping him establish balance, eye-hand coordination and to instill a love of the sport in him.

We have also set up an indoor soccer goal. We just open up one end of his playpen and it became a goal. Alex has learned not to use his hands, but to kick “dribble” the ball down the rug and shoot the goal. These are all great activities, esp in the afternoon when everyone gets cranky!!

My training this week was derailed with a stomach virus, but I still managed to do a bike test on Sat. that showed significant improvement. I feel stronger and am sweating a lot more than I have ever sweat in training in my life. I did a short swim test and will do another tomorrow. I have lost 5 pounds this month!!

March 2

We returned this past weekend from our first family vacation. It was a disguised triathlon training camp, really, where I spent the majority of each day training one-on-one with my new coach, Matt. Erik and I drove all night to get to our lovely condo and were greeted by amazing weather. The kids were so well behaved in the car, despite the 20 hours of driving. They loved the open space of the condo and the lovely warm weather. They played for hours outside in the cul-de-sac and got to go swimming daily. We hung Alex’s tennis ball and he and Izzy hit it with his racquet. Alex got to spend a whole morning alone with Daddy, seeing the alligator park which was a wonderful treat. He got an alligator named “Gaty” and one for Izzy named “Alli”.

I tested my limits and learned so much about my running style (and how to improve it), my biking style (and how to improve it a lot!) and myself, the new self that exists now after a 4 year break from training, a marriage, two children and all of the ups and downs we have faced with Alex. I am stronger mentally, kinder, more considerate, and definitely tougher all around. I truly believe I can qualify for Kona this year and I truly believe I can go on to have a good race in Kona, despite the fact that it will be held just about 6 weeks after my Louisville IM. I read Born to Run on the way down to FL, and that got me fired up to train. I am reading Jack Canfield’s book on achieving your dreams, and that has me fired up to race, among other things.