Infusing Love: Life Imitates Art

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
When ABC premiered, “Speechless” last fall, I wasn’t sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I’m happy to say it’s readily become one of a handful of shows we watch religiously each week as a family.
The show centers around the DiMeo family. The oldest son JJ has cerebral palsy and uses a specialized board and laser light to communicate. He has a dedicated assistant, Kenneth, at school, and Kenneth has become a much-loved member of the DiMeo extended family. Younger siblings Ray and Dylan round out the children in the family and are each unique in their own right, and as most siblings of someone with special needs, often find themselves scrambling to make their mark in the family. Mom Maya is the quintessential chronic illness mom who is dedicated and determined to do anything and everything for her family, and Jimmy, the dad, lends levity and unleashing support.
My husband and I often watch the show asking ourselves, “How do they know this crazy stuff happens to us?” Whether it’s Maya owning the fact that her house is a mess, but that she secretly lusts for the perfectly Pinterest-inspired pantry, or middle-child Ray wishing for just “one normal day,” or younger sibling Dylan being disappointed when no one from the family shows up to support her at her track meet, the show so often resembles our life that we have to stop the DVR and look for the hidden cameras that must be in our home capturing the unpredictability, resiliency, and just plain toughness that comes with having a chronic illness.
So while the show may not be specifically about hemophilia, it’s refreshing to see family life displayed in such a familiar way. Maybe we aren’t so weird after all, right?
Last week’s episode though…last week’s episode got me. JJ was looking for a bit of independence and Maya was having a tough time letting go. (Well, that certainly sounds familiar.) JJ is not amused by his mother’s inability to let go and sets out for some independence. Maya tries to give JJ some space, but while leaving him alone, comes upon 20-something year old wheelchair-bound man and realizes that JJ doesn’t need her advice – he needs to talk to a peer. While she may have been a bit overzealous in her approach to the young man, she convinces him to talk with JJ.
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As the young man chatted with JJ (in a casino of all places!), the conversation wasn’t fully audible, but you could tell that these guys understood one another. You could tell the conversation was meaningful and honest. It was one of those moments when watching a television show that you have to bite your lip and swallow hard. It was a moment I so often see in the bleeding disorders community between blood brothers and younger families. It starts with the blood brothers mentoring moms and dads when our babies are small, but it grows into peer-to-peer relationships as our sons with hemophilia mature. I was with a group of Blood Brothers in the fall; these are men who have known Thomas since he was a newborn and who were and are the guys I call upon when I need some hemo advice. One of the guys said to me, “Hey Sonji! Before you know it, Thomas is going to be at this event with us!” And I replied, “And you guys better take care of him!”
And you know what? I know they will.
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To watch this and past episodes in full:

Sonji lives with her husband, Nathan, and three children Nora (15), Thomas, (13), & Natalie (11), in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.