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Dec 04, 2013

“What is it like to have a brother with Duchenne?” one mother asked her eight-year-old daughter.

The child replied, “It’s hard because when you have a brother with Duchenne sometimes they get more attention than you.”

Out of the mouths of babes often comes the plain truth. This same wise child also spoke touchingly about her fears. “I worry about what it’s going to be like for my brother to be an older person, like when his muscles really aren’t working any more and he’s in a wheelchair. Like are my parents going to have time for me? What if we can’t figure out how to play together when he can’t move anymore? What if he dies?”

So many of the mothers – I heard from no fathers – worried that they were emotionally short-changing their well child even though they tried to pay them equal attention.  

Another mother wrote, “My sister and I each have problems that festered, undiagnosed, well into our adulthoods, in part because our family lived under the misapprehension that having one disability in the family —our brother had cerebral palsy-- precluded all others.” (Her sister had ADHD and she had autoimmune disorders.) Then, when she became a mother herself, she gave birth to a son with DMD. “My biggest regret as a mother is that for a while I continued the same pattern with my daughter.” She added this final remark, which speaks to all of the so-called well among us: “I think that just living and loving someone with a severe disability should count as a special need in itself.”

Perhaps the maternal instinct bends inevitably toward the neediest child. And why shouldn’t it? Professionals like Myra Bluebond-Langner, who has written and lectured frequently about chronically and terminally ill children, has this to say on the subject. “Much of what the well sibling feels in the way of lack of attention, disruption of family lifestyle, concern for the ill child, and fear of the illness’s consequences maybe not only be unavoidable, but also appropriate.” Some problems cannot be solved, no matter how hard everyone tries. Certainly we parents of Duchenne sons know that all too well.

One exceptional letter came from a single mother of 9 children, the last of whom has DMD. She refers to him as “the caboose,” and “the mascot” of the family. “Some (of his siblings) are comfortable enough at this stage of the game to help with his care; others not so much. Some baby him; others cut him no slack in his social skills, but they all love him dearly.  I gave them all the love I possessed. Did I do enough for them? If not, they will have to forgive me.”

Some children continue to resent the premature burdens that were put on them when they were too young to bear them, and have never been able to forgive their parents. I heard from two mothers who genuinely believe they “did the very best they could.” Nevertheless, one mother’s adult daughter has severed ties with her family entirely. For the other, relations are so strained with her well adult son that being together is fraught with mutual discomfort. For those parents, and for the well children, their losses are doubled.

For some siblings, perhaps for all, wounds never heal. Even though her brother has been dead for 18 years, one adult sister’s feeling of loss are still so tender and unresolved that she cries whenever she remembers the day her brother stopped walking. Another sister has spent her entire life in the shadow of her brother’s wheelchair. Only now, as she approaches mid-life, has she begun to find her own way.

Not surprisingly, often the sisters and brother of boys with DMD devote a great deal of time, and sometimes even their careers, to exercise and sports. They practice yoga, not just for its physical benefits, but for the meditative peace it brings. We have observed our son become so passionate about sports --swimming, cycling and running --that he has qualified as an iron man tri-athlete. Does his devotion to sports have anything to do with what we used to call Peter’s “muscle problem?” Does the fact that, as a young man, he volunteered to take handicapped children swimming have anything to do with his love for his lost brother?

For the most part, even though well siblings often cannot avoid their worries and resentments about receiving less parental attention, there’s a flip side of that coin. These siblings tend to be especially compassionate people. Stories of how sensitive and compassionate their well children were the theme of many of the letters I received. One woman worried that her two older children would resent their younger brother who has DMD. Instead, her two well sons responded with extraordinary compassion. When one of her unaffected sons was 10 years old, she explained to him that DMD would weaken his younger brother’s muscles. His response?

“Mom,” he said, “I will just give him some of my muscle.”