My friend Nini is one of those energetic, positive people you want in your life. She’s a warm-hearted fast talker who shares sometimes funny, sometimes moving, stories at rapid fire. I say moving because Nini’s a single mom of two boys, the oldest of which, eight-year-old Rodrigo, has Christianson Syndrome — an extremely rare condition affecting the nervous system that causes delayed development, difficulty walking and standing, the inability to speak, seizures and more. This means my friend faces intricate logistical challenges that leave me nothing short of dumb-founded.
Nini came to mind this week when a study landed in my inbox. Appearing in Pediatrics, the research examined experiences of families with children with severe disabilities (in the study’s case, trisomy 13 and trisomy 18). In total, 332 families returned questionnaires, and the results proved optimistic: 97 percent reported their children as “happy” and said their lives as parents were enriched because of their disabled children.
This goes against the perception that parents of children with severe disabilities are tired and sad, or that the child is living a miserable life with their limitations staring them in the face. So I asked Nini what she thought of the report compared to her own life.
As it turns out, she agrees with the results. “My life is actually enriched because of Rodrigo but I think that’s also part of my positive personality,” she says. Sure, if someone had told her younger self that she would one day give birth to a child who is severely disabled, she would have said no way, I can’t deal with that. Yet, her son’s challenges have forced her be stronger. “We don’t know how strong we are until we have to be,” she says. “Because of this feeling, that my time with him is limited, I make the best of it, and really enjoy him as my child.”
Let’s be clear — my friend has incredible daily challenges with her son, who along with her younger son, splits his time between Nini’s house and their dad’s. “So when Rodrigo is around, I can’t sleep in, I can’t stay up late, I can’t leisurely enjoy my coffee and read the paper, because he grabs my coffee, spills it, and rips up my paper,” she explains. That leaves her with a micromanaged day where everything from picking up milk from the store to showering needs to be minutely planned.
“Yet, I feel fortunate to be the closest person to him,” says Nini. “I can make him smile — he always greets me in the morning with such a smile and there is great joy in that.”
While it’s been years of accepting what she’s been handed and editing the vision of what she wanted her son’s life to be, she knows her acceptance of his syndrome has helped shape her outlook on the life her family leads. “I think that’s why I’m happy, and we have a happy family life. Because in the end I have a happy boy and my life is not over,” she says. “I can still enjoy a good walk, a great meal, a good book.”
Do you have a child with a disability? How has it affected your life?
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