from Life Learning magazine, January/February 2008
A Little Bit Great
by Katie Frampton

Gabe and Joel are learning from life and their progressive, degenerative neuromuscular disease. If their future holds a time where they are unable to do some things, I am all the more grateful that we choose to live a life now that honors them.

It is a beautiful, sunny fall morning and my two little boys are exploring the never ending adventure that is their backyard. Around every bend there is something new and magical. They climb and jump and fly. Butterflies are dancing by and the birds are hopping to the feeders. All is right in our little corner of the world.

Joel is five years old and Gabe is two-and-a-half and they both have a progressive, degenerative neuromuscular disease. We found this out through a year of testing after Joel was having muscle pains and then had his first metabolic crash when he was four, leaving him unresponsive in the hospital emergency room for hours. We now travel from South Carolina to Ohio to have tests and visit with a team of specialists. At the hospital, the boys are labeled all day long: cognitive regression, developmental delays, hypotonia, myopathy, static encephalopathy. At home, there are no labels. We are unschoolers, life learners.

Let me go back to the beginning. Joel was a fertility baby, wanted and worked for and in the instant he was born he started teaching me. It was easy and natural for me to breastfeed; in my mind, we’d stop when he was a year old. Strangely enough, on his first birthday, there was no grand end to nursing. We continued until Joel decided he was through at 19 months. They both still love to be worn in a sling when not running free. Every night our big bed holds us all, a work-weary dad, a funky and fierce two-year-old, a sensitive superhero five-year-old, a mom and a cat named Dharma who masquerades as a pillow hog. My husband Todd and I both come from very mainstream families so these things shock our families. Todd and I, on the other hand, never questioned these things; they were natural and what worked for us. We never thought about attachment parenting per se; in fact, we’d never heard of it until we’d been doing it for a few years.

I started bringing home John Holt books from the library when Joel was three and Gabe was a few months old. That was a bit too far out for Todd to accept then. The only homeschoolers we were exposed to growing up were dogmatically religious children who did seem to have difficulty socializing. It’s certainly not what the Smiths and Jones are doing in the neighborhood. So we thought we’d give preschool a try. Joel lasted three days in a great little artsy Montessori school before he started to lose his shine and my gut protested so loudly I was sure an ulcer was imminent.

Then, we used a workbook off and on for a week. Joel hated it, so we threw them all away. I looked at him and thought: He is brilliant, funny, independent and curious, so why should I do anything other than be quiet and move out of his way? Unschooling, life learning...letting them lead, forging and following their own path. I always knew that I would parent differently than I was parented. My parents love me and did their very best. My best just looks very different from theirs. I have long since accepted and even enjoy the differences. It isn’t as easy for my husband, who enjoys fitting in and not having to always explain himself. After all, he is the one in the working world, surrounded by people who follow the rules and who don’t buck the system.... He doesn’t have the same gift I do to throw mainstream ideals to the wind. To him, it may feel right, but how to explain your passion for something so different than the norm to people who see anything different as a direct insult to their way of life? He is more at ease with it now; you only have to see to believe and then it’s easy to ignore the disapproval.

After the first doctor’s appointment in Cleveland, my mother (a National Board certified public school teacher who has never approved of the idea to homeschool) said we better send Joel to school now because he may not be able to go later on. Well, I will not make a what-if-based decision. They are happy and whole and none of us knows what the future holds. If their future holds a time where they are unable to do some things, I am all the more grateful that we choose to live a life now that honors them.

Sometimes Joel forgets words and stutters. Sometimes our days involve nurses and IVs and lots of supplements. Sometimes we get really scared when we get confusing, damning test results. Then we get called into another room to taste a “potion,” hear a story about other planets and eavesdrop as he gives the neighbor a lecture on the merits of recycling. He dreams of visiting the Himalayas and Hong Kong. He asks at least 100 questions a day. We look at each other and say – there is nothing wrong with this kid, he is who he is and who he is is pretty darn cool.

As with many second children, Gabe gets the benefit of experience. He will not go to school unless he so chooses. He is more than Joel’s shadow, he is his echo, so in love with his brother yet so very different. He is not very verbal at this point, so he spends a lot of time yelling and shrieking. Both sets of grandparents call him rotten but I am proud of his determination to make his needs known. I will be grateful when his words catch up with his mind because he can be quite shrill. The more we respond kindly and with a clear voice, the more he is able to speak softly with words. He is wild and wooly and wonderful.

Kids deserve to be heard all the time, not told to be quiet and write their names. I want my kids to be able to run in circles, not follow the leader in a line. Here at home, they are loved and able to explore the world free of expectation. There it is – the light bulb moment for me: No expectation. It is not my job to teach or mold my children. I am here as a guide and facilitator.

When we are out and about and see people we know, the first thing they ask about is how the boys are feeling. I feel strange and out of balance answering them. They only see the medical condition, which seems to overshadow everything else. We don’t think of the problems unless one is sitting up and biting us at the time. Otherwise, we are moving and grooving to the beat of a far different drummer.

After Joel had a muscle biopsy, we were in the recovery room as he was waking up. The nurse came in to assess his pain and asked if he was okay. This tiny sleepy voice said, “I’m a little bit great.” Never bad, just not as great as usual. There is always something great about being alive and being loved. What an amazing way to view the world.

Katie Frampton is a freelance writer, the lucky mom to two quirky and creative life learners and wife to the hardest working man around. A hippie at heart, Katie is a voracious reader and the world’s worst housekeeper.

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