Glass children syndrome: Are cystic fibrosis siblings at risk?
We're noticing the impact when our daughter's life gets priority treatment
Most days when I start my computer, I barely glance at my home page before shutting it down. But the other day, an article title about a “glass child” caught my eye. Something was telling me to read the article.
Upon reading, I learned that the term “glass child,” quite aptly, refers to a sibling of a chronically ill or disabled individual. Studies are finding that siblings of disabled children often feel invisible, lost in the shadow of their sibling’s disability. Since the birth of my daughter, Claire, nearly six years ago, I’ve often wondered about the effect that her cystic fibrosis has on our son.
That nagging worry goes back to my first cystic fibrosis event, a dinner arranged for caregivers through the Cystic Fibrosis Foundation. We began the evening by going around the table and talking about our cystic fibrosis connection. I explained that we had a new baby with the disease and a 2-year-old son who didn’t.
As I was packing up to leave the event, another caregiver approached me. She cautioned me that she’d known another family whose child without cystic fibrosis had died by suicide because they felt the family paid too much attention to the ill child. I was crushed hearing this tale and even more determined to ensure our son felt heard and seen in the wake of his little sister’s diagnosis.
When my children were younger, my husband and I tried to divide our time, love, and energy as equally as possible. For the most part, there didn’t seem to be any impact on our son. He was blissfully unaware of cystic fibrosis until he was around 3 and a half years old. At that time, though, I noticed signs of his jealousy and resentment.
Claire’s care requires an inherent level of attention that we cannot avoid. As recently as this summer, our son is upset if Claire has to go to the doctor without him. During breathing treatments, she gets control of the television. It’s an example of the seemingly small disparities that I now realize may have a lasting effect.
How can we make our son feel heard and seen?
I’ve recently been seeking opportunities to talk to our son more about his sister’s disease and what it means for him. The other day, I asked him what it was like having a sister with cystic fibrosis. His response made my heart hurt: He told me he has to be extra responsible for helping his sister and avoiding dangers. I know he’s having to grow up quicker and in a different way than a lot of his peers because of his sister’s disease.
When my son’s summer camp got canceled last week, I took the opportunity to make sure he felt special. We got to spend quality time together. Time without remembering his sister’s enzymes or being mindful of coughing strangers. Time I’ve enjoyed immensely. Time that’s opened my eyes to the importance of intentional, special moments with him.
Moving forward, I plan to prioritize this individual time at least once a month. It’s going to be hard with our schedule, but I see the difference in him.
Being a sibling of a disabled child has to be hard. Inevitably, there will be times when the disabled child is prioritized. Yet I also think that our situation is going to grow our son into a more empathetic person. I already see the benefits of him having a sister with a rare disease. My hope, when he’s older, is that he understands how proud we are of the important role he’s stepped into.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
William
This article provides beneficial information on health that is indispensable for everyone. The comprehensive approach taken here is laudable. I value the dedication put into making complex topics clear for the readers. Such content is uplifting and promotes healthier lifestyle choices. The lucidity of this information truly makes a contribution. Keep up the excellent work!
Ligon Business & Estate Law
Jennifer, your insights into "glass child syndrome" are both moving and important. 🌟 It’s vital to recognize how a sibling’s chronic illness can impact the entire family, particularly those who may feel overshadowed. Your dedication to ensuring your son feels valued and heard is commendable. Thank you for sharing your experience and shedding light on this often-overlooked issue. Your story is a powerful reminder of the need for balanced family support.
Emily
Jennifer, thank you for your article. I really appreciated hearing a parent's perspective on this topic. I have an older sister with CF and heard about glass child syndrome a few years ago. I have great parents who worked very hard to care for and give time to us both, however I did feel overlooked at times and I experienced resentment. To be clear my sister and I have a great relationship, we are going on a trip with our partners this weekend, but it was hard for both of us that we had different needs growing up. She struggled with requiring more time and I felt overlooked. I think being aware of it and talking about it with your son is probably the most important thing. I would love to see more supports for parents on this topic.