I have been primarily writing of what this disease has done to my life. This is partially because I truly only know my perspective, but also because I’m nervous to share Liam’s words. He is his own person and I don’t want to over expose his personal experiences. This need to protect his privacy must be balanced with the desire to educate people about what Muscular Dystrophy really means. We still have plenty of people who believe Liam has MS. I understand their confusion, and I feel it is my responsibility to fill people in on the truth.
Liam knows he has Muscular Dystrophy, as challenging as it is to articulate, and he tells people about it. Liam has a dear friend, Henry, who our family cherishes. Henry is a spunky classmate who jumps to Liam’s side if someone asks why Liam uses a wheelchair. “It’s because his legs get tired!!” Liam is lucky to have such fun friends, and they are lucky to have Liam.
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n his own way, Liam has expressed feeling alone in his disease. He told me he wished he had a twin brother named “Liam” pronounced Lie- um. That Lie-um would have MD just like him and sleep on the top bunk.
Lydia, 3 years of spunk and typical muscles, is able to push Liam over. Liam has screamed out “it’s not supposed to be this way! I’m older!” My response to his tears and exhaustion? “There is not ‘supposed to’. You are strong in certain ways, and Lydia in others”. These conversations are happening more and more. We are determined to be honest about his disease.
We have not told Liam what the doctors have told us about the typical course of the disease. We are going to deal with these issues as they arise because like everyone, no one knows what the future holds. I refuse to scare him, hold him back, or let him give up because of what “might happen”. I am honest as honesty and openness becomes helpful.
I really like the saying “We do hard things”. This is hard, but we will choose joy.