Acknowledging my daughter's disabilities matters
by Jennifer Lendvai-Lintner
[Image description: Infant Hilde is seated in a baby chair eating a meal via gastronomy tube. Hilde's hearing devices can be seen as well.]
Several months ago we relocated from California to New Jersey to be near family. It’s for this reason, in combination with pandemic-related precautions, that although Hilde is 19 months old, our extended family is just beginning to spend time with her in person. This means that they are only very recently beginning to see firsthand what life looks like for Hilde and for us. It’s a little different than anything they may have experienced until now. A few weeks ago, my niece and nephew were over for one of the outdoor, masked visits we’ve come to know well during this pandemic. On this particular visit, the weather was warm enough to have Hilde out of her fuzzy stroller bunting. She was sitting on my lap, and true to form, her shirt was riding up exposing her adorable potbelly. Upon spying this, my observant seven-year-old niece Amelia shot out three questions in rapid fire…
Oh! Why does her belly button look like that?
What’s that thing on her tummy?
What is she wearing on her head?
For the first time, Amelia had noticed: (1) Hilde’s ventral hernia (that’s why instead of the usual presentation, Hilde’s belly button is a convex mound about the size of half a plum); (2) her Mic-Key button (the low-profile port for Hilde’s feeding tube); and (3) her BAHA (the hearing aid headband that conducts sound to Hilde’s ear with grade 3 microtia).
Amelia’s questions were direct in the refreshing way kids can be totally blunt; I loved them. I knew Amelia was asking out of sheer curiosity. They were straightforward, yes, but not rude or intrusive. I appreciated Amelia seeing Hilde’s differences and asking about them in a genuine, inquisitive way.
Because quarantine has kept us isolated for the majority of Hilde’s life, we haven’t had a whole lot of exposure to the general public. As we start to reintegrate, it will be interesting to see how Hilde is received. I expect that people will be curious about her. It’s probably not everyday one sees a child who looks like Hilde or has the equipment that she does. I anticipate a whole spectrum of experiences in our future, which will likely range from lovely to undesirable or even hurtful.
I am an authority on no one else’s feelings but my own. I can’t speak to how other caregivers of children who have medical needs and/or disabilities feel about this subject, nor can I comment on how individuals living with disabilities feel. Every person is entitled to their own opinion on the matter; all opinions and preferences are valid. I’m pretty sure there isn’t a one-size-fits-all way to do things that will suit each person perfectly. For me, kind, genuine acknowledgement feels better than being ignored or overlooked. Some people I've encountered, whom I gather might be afraid of doing or saying the wrong thing, fail to address anything Hilde-related at all. They glaze over any and all aspects of the life we are now living. That feels pretty bad.
Hilde’s PKS, her chromosomal condition, and her disabilities aren’t tragic nor are they something of which to be ashamed. Same goes for her equipment. It helps her live a healthy, full life; it gives her freedom and safety. As for Hilde’s physical differences? Well, we are all unique—no two of us the same. While Hilde’s differences might be more apparent, they make her who she is meant to be—beautifully Hilde. Don’t we all want to be seen and appreciated for exactly who we are? I certainly do. I want that for Hilde, too.
It takes courage to take a risk and ask us about Hilde or our situation, but want in on a little secret? Even as a parent of my own kiddo with disabilities, I myself don’t know the exact right thing to do in situations such as these. So if it can feel uncomfortable for me, someone who lives and breathes a life that looks a little different, I empathize with those who don’t have as much experience in this department. When I encounter others with disabilities, I’m not certain I handle things the best way possible, but I act with a kind heart and a desire to learn, grow and be inclusive. If I follow Amelia’s lead, and start from a place of seeing and acknowledging rather than ignoring, that seems like a wonderful place to start.
[Image description: A smiling Hilde is reclined on a blanket during therapy. Hilde wears hand and elbow braces as well as her hearing aid devices.]
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