Lucas Hanson is a beautiful, funny, easy-going-yet-quite-opinionated two year old who knows exactly what he wants all the time. He loves finger painting, looking at books, listening to music, playing games on the i-pad, ‘eating’ (sucking on) bananas and dancing around the room in our arms.
Lucas was born on August 17, 2009 in Washington DC. He was two months premature, thin, weak and bruised; he made no effort to breath. His massive internal bleeding – including in his brain – led neurologists to believe it was a brain injury causing his hypotonia. He spent the first three months of his life in the NICU. When he was two months old he had surgery to place his trach and g-tube and at three months, even without knowing why he had such severely low tone, we were thrilled to bring him home.
It wasn’t until he was six months old that a neurologist recognized his symptoms as a myopathy. They suggested doing a biopsy, but when we read about CNM and MTM, we were sure Lucas had MTM. And indeed, we skipped the biopsy, and soon a blood test confirmed that he has x-linked MTM.
We’ve kept a pretty active blog of Lucas’s life since he was born to try to describe to our friends and family the amazingly complex and emotional journey it has been to become Lucas’s parents. He’s a bright and wonderful kid, but he’s also really hard to describe to someone who hasn’t met him. He uses a vent about 22 hours a day. He can’t swallow or roll over or sit up or even lift his head up on his own. We’ve only met a few kids with x-linked MTM, but it seems that physically Lucas has one of the more severe manifestations of the disease.
In the year since Lucas’s diagnosis he’s taught us incredible things about ability and disability and the joy that is possible even when walking or running or swimming or sitting or breathing unassisted are not likely to be part of your future. Despite all his challenges, Lucas is one of the happiest kids around. He is learning to communicate using American Sign Language (ASL) and vocalizing. He loves playing games and asks to watch animal videos on YouTube over and over and over again. He’s recently learned colors, and this fall he’s loved going for strolls around our neighborhood and identifying the different colors of the leaves (yellow is his favorite).
Obviously there are days that, despite all of Lucas’s gifts, living with MTM is really hard. We see other kids running around wildly and wish Lucas could easily skip around the playground and jump on the swings with his peers. We have days when the task of parenting of a medically fragile kid feels extremely isolating. There are days we can’t help but worry about how big he is already, wondering what will happen when he’s not so easy to lift. And in the U.S. we have to deal with an incredibly broken health care system – one that sometimes puts us in the hands of loving, competent doctors, but often just puts us through many wasted hours of navigating bureaucracy and figuring out how to keep health insurance for our kids. We’ve been fortunate so far in terms of health care, but many people with disabilities in the U.S. have not.
Since Lucas was born we’ve experienced love and grace and beauty that we could never have known without Lucas. A big part of the fact that we’re doing so well is thanks to a huge, extended community of family, friends, and professionals who have supported us in big and small ways. Lucas has two wonderful nurses and three great therapists (physical, speech, and occupational) who come and work with him in our home. They are young and enthusiastic and bring as much love as technical knowledge to their work.
Our friends have worked hard to not just love Lucas completely, but also to figure out ways to make gatherings and events accessible to Lucas and all our specific needs. Lucas’s grandparents all live on the other side of the country, but they’ve made many, many trips to Washington DC since he was born, and they chat and read books to him via skype regularly, so he feels very connected to his Nonna, Papa, and Grandma. And we’ve also been fortunate to connect other families living with MTM and CNM. Krista went to the second MTM / CNM Family Conference in the U.S. this summer and was able to meet dozens of amazing families. We are grateful for all the support we’ve received from friends, family, and practical strangers, and we look forward to continuing to build relationships with the MTM / CNM community of families around the globe.