Seizures

Premature babies run a higher risk than term babies for all kinds of medical issues, from autism to ADHD. Last week, we discovered that Alex's prematurity, or perhaps the brain damage that resulted from that prematurity, has put him at risk for seizures. I suppose we should have assumed he was risk, but as he has been a relatively healthy boy for 4 years, we had never even considered the possibility.

Since Alex started going to preschool in June, he has been sick. Like all children who start school, the first year is a doozy with illnesses. I think this winter is worse than ever-I blame the unusually warm weather. Alex catches everything and recovers very slowly. His immune system is not as strong as his sister's and when he is sick, he won't eat, loses weight, and in general gets completely worn down. Apparently, the cumulative effect on his little body was to create the perfect opportunity for a seizure.

I won't go into the horror of finding Alex in his bed, post-seizure, looking as though he were taking his last breaths of life, or the terror of not knowing what had happened, so quietly, in the early hours of the morning when I was downstairs enjoying a cup of coffee. He seized for over 90 minutes, and we spent a lovely overnight in the Yale ICU. Five days have passed, and I still can't run. I was training about 12-15 hours/week for my upcoming ultra season, which begins in Utah on April 21. But when I try to take a step, everything hurts, especially my psyche. There is no pain like the pain you feel for your children.

It took Alex a long time to recover too. Fortunately, he remembers nothing of the event. It took him days to be able to sit up on his own, walk, talk...he's better today.

And poor Izzy, who witnessed her brother seizing, watched the medics take him away on a stretcher, then observed him plugged into machines and sucking on oxygen, and then had to stay alone at her Grandma's overnight, which she had previously made me promise I would not do to her--not because she doesn't love her Grandma, but because she gets so homesick to be anywhere without Alex. When we were all reunited, Izzy was shocked at the state Alex was in, and asked us repeatedly when he was going to be better.

When you are the family of a preemie, you wrap your arms around each other and face each new obstacle as it comes. Preemies don't just get better and move on. We can't live our every day in fear, but I'm sure there is an underlying sadness in Erik and my psyche that wasn't there when we got married. A friend of Erik's, whose wife and daughter have faced some serious health issues, commented to me the other day, "I know why you run so far. Like you, I need to see the sunrise every day."

40 on 40

This week, Erik turned 40. After much discussion about how to celebrate this achievement, Erik decided he wanted to run 40 miles. So on Saturday, we ran. Our course took us through the back roads and hills of Litchfield County, CT, which is notoriously hilly, and in January, it's cold. In fact, it was blizzarding.

For the first 20 miles, which covered about 1200 of elevation gain, we met less than a dozen cars, not a single snowplow and it was the morning was magical. We shuffled our way through inches of fresh snow, which made everyone stay inside, except us, spending a romantic day together doing what we love, running. By the second 20 miles, a flatter double loop around the Farmington River, every snowplow in the county was out, and what had been fluffy snow, with a decent grip and soft landing on the feet, because a slushy, slipper mess. Our shoes were soaked, blisters formed, and our quads aches as we slipped backward with every step. Amazingly, we kept it together emotionally, and enjoyed each other's company right up to the last minutes of the 10 hour day. I guess we were both in need of a long, quiet run. I was sore on Sunday, but ready to get back out there for another long workout, which was a good sign in terms of my ultra training. I think Erik took Sunday off, but he seemed in much better shape than I have seen him after any long run before.

Normally, I dislike the cold. I have recently been reading about Badwater, where temps reach over 120 degrees, and it is tempting me to train harder to be invited to this race someday. I remember running in Iraq in August, when evening temps went above 120 degrees. Back then I worried about kidney damage, but had no way of monitoring that, really. I just ran, and tried to monitor whether I was feeling faint. I never did. When training and racing in Louisville, KY last year, in a record hot summer, I never felt like I was overheating. I love running in hot, hot temps. But, I have learned to dress for the weather, so last weekend, running for 10 hours in 15 degree weather, I dressed well, covered all skin, and carried all of my food and water, and actually, it wasn't that bad. Freezing camelpak tubes required frequent drinking, and that probably aided in my hydration. I have also recently discovered that wearing your hair in braids at your ears helps keep them warm. Still next year, our 41 on 41 will probably take place someplace warm.

2012: The Year of Adventure

Every January our family chooses a moto for the year. 2012 is our year of adventure! Whether planning more trips to the Y to swim, or heading out west for spring ultra training, we are making more of an effort than ever to enjoy travel and adventure together as a family.

Travel is an education. We started traveling at a young age with our children and they still talk about what they have learned from trips we have taken as a family. I am amazed at how the kids grow when they have hands-on, real world, new life experiences. Not only do they learn about regional animals, cultures and cuisines, geography and languages, they have become more curious about the world around them. Since much of our travel so far has been based around my ultra training and racing, they also have fallen in love with trail running (where most of the training and racing takes place). This year, we head to Utah and Colorado, which will include two major ultras, a 50K and a 50 miler. Alex is already talking about how he can't wait to do some awesome trail running as a family.

Running is one of the best therapies we have done with Alex. He has strengthened his left leg, improved his balance, worked out his frustrations, and has fallen in love with the feeling of movement through space. And always, Izzy is by his side. Trail running is tougher for both kids, because the terrain is more uneven. I may try to have Alex wear light gloves this year, so that when he falls, he will have some protection on his hands, which often take the brunt of the fall. Many athletes in the X-Terra races wear half gloves to protect their hands--that's where I got the idea. We'll give it a try.

Yellow Belt-The Rising Sun

On Tuesday this week Alex earned his yellow belt. As his Sensei explained, he is now a rising sun. The whole family attended the test to watch Alex earn his belt. It was an emotional morning, and a day we will never forget. Alex is such a performer and so in love with the stoplight that he was totally focused and performed the best we have ever seen him. He recited the belts backwards, and performed his moves with ease. At one point he lost focus, and later told me that he was trying to get his dad's attention because a big FedEx truck was passing by the karate school. He is, after all, only 4.

Martial arts, taught by the right Sensei, has been one of the most beneficial therapies and self-confidence builders of anything we have tried. If your child has CP, get him or her into martial arts. But don't just go with any teacher. The teacher needs to know his (or her) marital arts, but also give a nice mix of praise and challenge, discipline and understanding. Alex was 2 when he started karate at the Y. It was a chaotic mess, but the kids loved it and Alex fell in love with the sport. By 3, we found a school we liked and soon realized that a group lesson was too distracting, so he started twice weekly private lessons, first thing in the morning when he was freshest and most cooperative. Children with CP spend up to 5 times as much energy getting through their day, which means anything after lunch time should be easy, fun, and low pressure, because they won't have the energy for focus and self-control. So, you set your child up for success, as we did, and get him into his most challenging part of the day right after an early breakfast.

In the last two weeks, we have seen Alex blossom in other ways. Taking him out of his preschool was our first step. He was so stressed out about going to school every day that we had begun to think he had a learning disability. We were in consultation with a behavioral therapists, who was very supportive, which is important when making big decisions for your children. But once we took him out of school for a few days for a trial run, he returned to our normal little boy, and we realized things were not going well at school. He had such an antagonistic relationship with several of the boys who had bullied him on the playground, that he had begun to have terrible nightmares and meltdowns before and after school. There was no option in this particular school than to pull him out. But, we needed to put him into another social environment quickly because he feared he had failed. So, we started him at another preschool, where he is completely content. Dealing with schools is one of the most stressful issues when you have a child with any special needs. But as a special needs parent, you have to toughen up, let negative people and comments roll off your back, and hug your children because they and only they (well, and your spouse!) need your positive energy.

Our two days a week in Mommy School has been amazing. We consulted a homeschool professional who advised us on some curriculum. Right now we are using Singapore Math and Institute for Excellence for reading and writing. Both are excellent. They require some study on the teacher's part, but Alex is excelling academically. He loves the challenge, the one-on-one, and is building tremendous self-confidence. It is amazing how making a few changes in a child's life will change his state of mind, and yours. Special kids require special attention and creative thinking to find the best possible set-up for success. Really, that could be true for all of us. Having the courage to make the change may be all that is required. The value for this week, incidentally, is courage.

Last Week's Value: Abundance

I love the value of abundance. It is by far one of my favorites, and one that gets overlooked in our lives. Alex loves this one too, because it is so rewarding. Abundance is the idea that the more of something you give out, the more of it you get back. Or as I really like to think, love multiplies the more it is used so you should not hesitate to give it to everyone--it will all come back to you in multiples. We use the example of love, but also of smiles, hugs, kisses, kindness...and of course the opposite. If you give out a frown, you will most likely get one back. The kids love to experiment with abundance. We smile at people and see what happens. We say good morning to people frowning in the grocery store and see what happens. There is no way that two toddlers smiling and saying good morning is going to get anything back but friendliness, so this value works every time!

Last week we purchased gifts for the family we have adopted this Christmas at a the New Haven Home Recovery, a home for homeless women with children. I love this organization because their point is to temporarily support these families while they get back on their feet--and it seems many (most even?) do get back on their feet. I like to support something where I can see that my effort sustained a family, just long enough to get them to safety, where they can go off again on their own.

So, we bought some things that the family needed--basics like a warm coat, hat and mittens for the child, a few toys, a stocking full of small toys and clothes, and some things for the Mom. Both of my kids completely understood what we were doing. They were having so much fun picking out clothes for the family, that they wanted to buy everything. At one point, Alex fell in love with a toy we picked up for the child and wanted to keep it. I reminded him that Christmas was coming and that we needed to think with abundance, so if we give and give to this family, most likely Santa will give to us too. Fortunately, we had been studying abundance. Abundance is one of those selfish values--you do good to get good.

The kids were so good about picking out these gifts that I could not resist letting them pick out something very small for themselves. It was fun. Giving is truly more beneficial to the giver than the receiver. If you are studying values with your kids, don't forget abundance!

Sensory Issues and the Preemie Brain

From the time Alex was a baby, it was clear that he had sensory issues that we needed to be attentive to. He used to cry when there were loud noises (such as a truck driving by the house or if our family sang Happy Birthday at the dinner table). He didn't like large groups of people in our house and would go to find a peaceful and quiet place in the house when things got loud.

As he is aging, now well past his 4th birthday, he has outgrown much of that, but still, some of his sensory issues remain. This fall when his classroom grew as children returned from summer vacations, he told me that he didn't want to go to school anymore because there were too many kids. I tried to tell him to find a quiet place in the room when things got overwhelming, but that is a large task for a small kid. He comes home from school completely exhausted emotionally and physically. And he quickly started acting out at school and at home. We hoped in time he would adjust, but his brain has just not matured, and that is something that can't really be speeded up.

I have done some research on the preemie brain and it seems that this kind of reaction to loud, chaotic environments can be common. Some of the preemies end up with non-verbal learning disabilities, where they have trouble reading non-verbal cues, come across as socially awkward and have trouble navigating their social space. Uncertain times, such as transitions from one activity to another, are particularly difficult, and are times when a child may act out. We can't say yet if Alex falls into this range, but we can say for sure that the typical school environment is difficult for him, and not a set-up for success.

After consultation with several doctors and our family, we have arrived at a solution. We will try him in his school 2 days a week rather than 5, and spend three days homeschooling him. I have consulted with a homeschooling professional and identified some excellent math, reading and writing textbooks which will serve as our guide. One of the days he may spend on Grandma's farm, where he spends most of his time outside, learning about the natural world with one of the four people he loves most in the world. Homeschooling Alex is an incredible journey. He loves it and can't get enough of it. He can literally sit for hours and focus on the projects and work, and doesn't ever want to take a break. He learns quickly, and answers intellectually. He is happy, relaxed and well-behaved. And so, we will homeschool while trying to give him some social life a couple days each week at school.

Every few weeks, we will assess Alex's progress and next fall, we will decide if entering into the private school we plan to send him to is in his best interest. It may be that Alex attends only a few days a week, and that the following year, we will be asking ourselves the same question, and assessing once again if he can handle a 5 day a week schedule.

Alex is so smart. He is reading at a 1/2 grade level, doing simple addition, subtraction and multiplication, and he is only 4 years old (and not even gestationally 4 yet). He also has an incredibly kind and good heart. But observing him in his classroom, you would not know he could read nor that he is a super kind and caring kid--he just seems lost and confused and a bit of a troublemaker.

As with all of our decisions, we are guided by what Alex's actions are telling us. This is a time to act, because we will never have his 4th year to relive. So, although I have signed up for another Ironman and several ultra races for our Foundation, and am in the process of ramping up the Foundation to become a million dollar charity, I again must scale back and refocus on what is most important--my children, and their happiness.

If you are a parent of a preemie, you have a life-long road, and just when you think things are getting straightened out, you find another twist in your life. But that is parenting for anyone, I suppose.

A few weeks ago, Alex's old babysitter was lamenting about her job, and Alex said to her, "Yes, your job is difficult, but have perseverance." And when he saw her the following week, he asked about her job. And he added, "You need perseverance, and determination too." Yes, Alex, we will persevere.

Cookies for Charity Day

Today we held our annual Cookies for Charity Day. Each year, Alex, Izzy and I bake cookies and sell them at the end of our driveway to help pay for the six Thanksgiving dinners we prepare and donate to the most needy in our town. We give the boxes of turkeys and all the fixin's to our town human services department and the minute we drop them off, they get delivered to families who are struggling.

The value of the week this week was charity. We talked about the value, then went as a family to purchase all the goodies for the dinners, then baked our cookies, packaged them and set up at the end of the driveway. We covered almost half of our costs this year. We are amazed every year at the generosity of our neighbors and random people coming through our neighborhood, when they hear that we are donating turkey dinners and that our children are involved. Kids from all over the neighborhood come over and help us market and sell the cookies, which makes it truly a community event. Who could turn down cookies for a few bucks when there are a dozen smiling faces on children waving the goodies in the air?

Charity is one of our most important values. We stress charity and generosity every chance we get, and both children understand what they mean. Basically, it all comes down to giving a very small part of yourself to make a very large difference in the life of someone else. This is how we approach The Baby Alex Foundation, and in our role as parents, although both take more than a small part of ourselves. But both give back immeasurable rewards.