Telling it like it is

Last week, Sylvie’s twin sister announced while we were brushing our teeth that Sylvie was Dopey—the goofy mute dwarf in Snow White and the Seven Dwarfs.  My daughter frequently assigns us imaginary roles, and this particular night we were characters in the legendary 1937 Walt Disney film.  Sylvie was Dopey, my daughter informed me, because Sylvie doesn’t talk, she smiles a lot and she does funny things. My heart sank a bit at this assessment, but it is true—Sylvie is voiceless, and she does have a silly grin on her cute flawless face a lot of the time.   Since my twin girls have turned 4 years old in January, there has been a heightened awareness that Sylvie is not like other children her age.  Sylvie’s sister asked me earlier this month why Sylvie still wears diapers.  Another time last week, I called home and found that my daughter and her papa were making “magic blood cells” for Sylvie, because Sylvie was sick. And on other occasions, I’ve heard her explain to children that Sylvie isn’t able to walk; in fact as she was helping me pick family member icons for my Facebook profile, Sylvie was assigned the stick figure girl who sat in a wheelchair.  In other words, Sylvie’s sister is well aware that her sister is “different” both from herself and other little people.  

So far this difference hasn’t been more than a curiosity—both for Sylvie’s classmates in preschool and for her sister. But at some point, I know the nastiness of people’s inability to deal with physical/cognitive difference may come crashing down on our family’s collective head, and I worry most about how it will affect Sylvie’s sister. I knew the blissful days of ignorance would not last forever, and as parents, we have been very forthright that Sylvie has some medical issues that her twin sister does not have.  But I somehow want to prepare my little one for the mean and thoughtless comments that people will inevitably throw our way because of Sylvie’s inability to talk, walk, or feed herself.  How do other families cope/prepare for the inevitable questions our children ask us about their siblings’ disabilities?

It’s not as if we’re hiding Sylvie’s disability nor do we NOT talk about it around the girls. We have gotten a little more cautious about talking about the mortal nature of Sylvie’s condition when we are holding care conferences or telling of Sylvie’s circumstances.  Sylvie’s daily seizures are almost routine for us, as are all the various personal care assistants, home nurse visits, and other care providers coming in and out of our lives.  Sometimes Sylvie’s sister calls to us when we are out of the room if Sylvie is having a seizure. Sylvie gets medicine at night, and her sister does not.  Yet, when I hear my daughter explaining to visiting medical students or social workers that Sylvie sometimes chokes when she eats, I literally get choked up. I don’t want my able-bodied daughter to bear the burden of talking for her sister.  Nor do I want her to be angry or feel cheated out of having a “normal” sister to play with.  While I know I can’t stop my daughter from having these feelings, I want to be prepared for when they emerge.  

The national Sibling Support Project seems like a great resource for brothers and sisters of people who have special health, developmental, or mental health concerns, but there seems to be a minimum age of 7 to participate in these programs.  Has anyone been part of this project in their part of the country?   When I emailed another parent whose child died of Krabbe (the disease Sylvie is living with), she thoughtfully reminded me that the surviving sibling is going through this journey WITH the parents—it’s a shared and individual journey.  I know some parents find explanations in scripture, others in more psychological or biological terms. Maybe our situation is a little more touchy, since Sylvie does have a so-called life-threatening disease (I call it “terminal”), and death may be the inevitable we have to address with Sylvie’s sister. I don’t imagine we’re going to have one big talk (like the big birds and bees sex talk that so many parents dread or skirt over).  I imagine this exploration/explanation happens more organically.     But I am curious to hear from other parents about how you discuss/deal with your kid’s disability when you have able-bodied children at home too.  

Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 4-year old twin girls.