This spring, we added hospitalization number 41 to the books. On a Sunday night, I met my mother, sister, and brother in the emergency room of our favorite hospital. In an effort to meet them in the waiting room before they were taken to the back, I picked up a light jog, and promptly made contact with the pavement. I stood up and realized that I was once again 13 years old with a skinned knee about to walk into another hospital to see my brother. Since birth, my brother has had an assortment of medical needs that extend beyond that of most kids. As a result, he has been hospitalized over 40 times in 13 years and my sister and I have spent quite a bit of time in teen lounges, hospital cafeterias, and full contact isolation gowns.
As the week progressed, our family fell back into our old worn roles. Yet, mine seemed to have shifted. At one point, someone mistook me for his mother and I strangely felt seen for the first time. As a sibling of a child with needs that are more complex than your own, often it can feel like your role is to be less of a bother. A few years ago, I came across the phrase “Glass Children.” I had watched a Tedtalk by Alicia Arenas titled “Recognizing Glass Children”. This was my introduction into the world of “Sibs” or siblings of people with disabilities. Upon hearing the phrase “Glass Child,” I was really frustrated. I am still dissecting exactly why being recognized as often overlooked frustrated me so much and I think it is because the stand-alone phrase glass child does not fully capture the experience. To me, being a sibling of a child with a disability is a source of pride and strength. The 40 plus hospitalizations have made my entire family resilient, and I take pride in my role as a family caregiver. While I cannot speak for every Sib out there, I think it is important to recognize our strong desire to protect and participate in the events in our lives that seem as though they may be too much to expect from a child. My advice to clinicians would be if the siblings are willing, involve them in the explanation and plan of care of their sibling.
When I met my family in the ER, my sister and I poked at each other and she teased me for trying to steal the spotlight with my “wound.” Fast forward a few hours, two panicked ER doctors, and a lot of nervous laughter and we made it up to the PICU. Later that week, I called my sister to vent and she echoed almost every thought that I had. I then realized that if I’m not the only one within my family to have these thoughts and feelings maybe there are others out there experiencing the same thing. I think the reason that the phrase “Glass Child” is frustrating to me is that it implies fragility and a desire to be seen. I think Tempered Glass is a bit more fitting. While I did often feel overlooked growing up, I thought it was necessary. I think part of being the sibling of a child with needs that exceed your own is that through repeated stress you build resilience and a deeper relationship with your siblings than you may have without. As I grow in this field, I look forward to meeting other Tempered Glass siblings and refining what that phrase means to me.