BY ALEXIS LEVINE

This post is a response to Communication Between Parents and Well-Siblings in the Context of Living with a Child with a Life-Threatening or Life-Limiting Condition, originally published in the Journal of Pediatrics and Child Health.

When I was two years old, my younger brother Barry was born. We developed a beautiful bond; one that was distinctly silent. As a newborn, it made sense that Barry didn’t talk, but my silence was unexpected.  I had a severe speech delay that left me unable to say anything other than “mamma” until age four. Because of this, I was drawn to Barry as the one person in my household who wouldn’t constantly pressure me to practice my speech. What developed between the silence was simply pure communion and it was a calming presence to both of us.

About six months later, our worlds changed when we learned Barry had a severe, unspecified neurological condition. But the doctors were lucky, because they had a doting older sister who was not yet school-age and was happy to serve as the healthy control to her brother. I must have gone to hundreds of doctors’ appointments, especially in Barry’s first couple of years, and I heard and remembered it all. Maybe my mom is correct in that I have a selective photographic memory (only forgetting the things I want to, of course), or maybe it was because most of these memories were so emotional, but I remember the early appointments as if they happened yesterday. I remember hearing the word “macrocephaly” and can picture the white and blue measuring tape coming towards my head as they measured to see if my head was just as big as Barry’s.  I remember when Barry was declared “legally blind” and I had to rest my own chin on the scary silver machine so my eyes could be tested too.

I remember two other things: there was no explanation of what all of this meant; and there was additional silence. What did it matter if his head was big? Can he see me?  I wondered why no one was explaining anything to me? I was told the facts, but not the information I needed to fully understand them. We would drive home and my mom would call and tell our loved ones the update. I’d hear these words again, and during the silence would let them float inside my head.

Aside from my role as the healthy control, I also made a silent vow to myself: for as long as I lived, I would be Barry’s protector in all things. This took lots of different forms – correcting anyone who incorrectly used the R-word as an insult, shielding Barry if I caught someone starring, and begging the doctors to see him the way I did and have even an ounce of hope about his long-term outcome. I became Barry’s keeper.

In the published journal article Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition, the authors, Jaaniste et al., do an excellent job of describing some of the feelings experienced by a “well-sibling”: “…children who have a very sick brother or sister may choose not to share their own frustrations and worries with their parents, perhaps believing their parents have enough other worries to deal with.” As noted in the paper, I can remember never wanting to burden my mom. I realized my mom simply didn’t have the capacity to hear about the day-to-day happenings of every 1^st grader at Henry E. Warren Elementary. I noticed my friends telling their parents these sorts of things, but the longer I didn’t tell her, the harder it became for me to talk about friend-matters with her.

This feeling of burdening my mother spread to things like illnesses. I can remember waking up sick in the middle of the night and agonizing over whether it was severe enough to wake my mom. I knew her sleep was precious as she had to be up for Barry’s first round of meds at 4:00 am. I would sneak into her room and stand by her bed for a few minutes, desperately waiting for her to wake up on her own. If she didn’t, I’d make little noises (sniffling my nose, a light tap on the nightstand). If that didn’t work, I’d just get into bed with her, and that did the trick. Always, I felt guilty for cutting into my mom’s minimal sleep and more guilty for complaining over the sniffles, when just inches away a sleeping Barry lay with real problems. I guess in some sense, I had already begun to become my mom’s keeper too, as I tried my hardest to prevent her from having to deal with any “Lexi issues.”

I do not think it was my mother’s fault for not helping me express my needs. As Barry’s health problems became worse, I was just entering adolescence, so I think the changes I was going through myself pushed me further away from my mom, and it deepened this silence between us.

The paper also does a good job at highlighting the need for different strategies for different children. I needed every little detail from every appointment Barry ever went to. Eventually, when I was about 13, my mom learned to never schedule a neurologist appointment at a time when I was not available. She knew she would not be able to answer my laundry list of questions. She also never cut me off. She never told me to stop asking questions, stop researching, stop proposing treatments. She knew this was the hope I clung onto that allowed me to continue to look at Barry through the lens of “normal sibling” eyes. My two older sisters were different though. They were okay with the Spark Notes version of the cold hard facts. She didn’t pressure my sisters to be more involved. She always reminded us that each of us was going to cope with aspects of the situation in our own way. This is not to say that my sisters didn’t love Barry; their love was just as deep as mine.

When we learned of Barry’s health issues, nobody sat my mom down and taught her how to talk about it to my sisters and me. Formal guidance from providers on how to talk to siblings, as the paper suggests, would help parents in similar situations. There is a large age gap between the three of us sisters. So what was appropriate for Kristin to hear was not the same for Brooke or for me. Of course, when my mom gave age-appropriate information to each of us, of course we compared notes, and were never pleased when we had received different accounts of the same story.

When I was 16 and Barry was 14, his condition worsened. He spent the majority of October 2012- January 2013 in the hospital and the doctors believed Barry needed to be moved to a pediatric nursing home. My mom and sisters agreed. I vehemently did not. I struggled to admit how angry I was at my mom for making this decision. I felt that it was giving up on Barry.  I think this is an example of the supportive emotional communication the article references. I believe well siblings need to be taught how to cope with the emotions surrounding their sick sibling. For the majority of Barry’s life, I feel like my family was on an extremely fast merry-go-round. There was no time for my mom to explain what anger is and how it may present. I was going through so much that I could not put into words. I thought only Barry could hear through the silence because when I visited him that calming presence remained. We were both able to comfort each other.

During this time, my mom understood how I was feeling, and she knew I didn’t want her help, so she gave me my space. I am so thankful for that, because I think if she had pushed, she would have pushed me away.  I am sorry this forced my mom into the silence that comforted me but meant she went through Barry’s final years on her own. I know she sacrificed the comfort she gets from discussing things so that I could have this silence.

I continued to be Barry’s keeper until he passed away when he was 16 and I had just turned 19. After his passing, I noticed a change in myself. I continued to keep his memory alive, but I didn’t need to be his protector anymore. Instead, I realized, I wanted to become that person for my mom. I wanted to protect her from herself and anyone else who thinks she did anything other than the absolute best she could, given the situation, with the resources she had available. This is why we call my mom Saint Joanne. St. Joanne raised three strong willed daughters while also raising and caring for Barry… alone.

I think that the paper’s section on a sibling death is an accurate representation of my experience. The article states, “parent and well sibling communication at the time of those [death] events… may impact on the well sibling’s… subsequent emotional response or even their bereavement outcomes.” In the last days of Barry’s life, it was just me and my mom with him. One of my sisters was on a trip and my other sister lived far away. During those days, the silence became heavy. There wasn’t anything anyone could say. My mom and I spent every waking second side by side, but I can’t remember any conversation. I remember going to Dunkins’ each morning, having pizza for dinner, and how we were watching “The Voice” when we got the call; but I don’t remember any conversation. Regardless, the communication between my mom in these days was very different from that of the communication between my mom and both of my sisters. My sisters, I believe, felt some guilt for not being there. They never asked about the details of what my mom and I endured those last days and my mom told me not push to tell them. One of them later expressed that not experiencing Barry’s death firsthand made her feel left out of the family. I understand what she meant, because having lived it, I know she cannot imagine what it was truly like without being there. To this day, both my sisters rarely talk about Barry. And they most certainly do not talk about his decline or death.

I don’t think my sisters have given themselves the chance to heal as I have. After Barry’s death, I came to understand the cumulative impact of the experience of my childhood as his sister: not knowing how to express my feelings, not wanting to burden my mom — it stunted my emotional growth. I mistook my perseverance for emotional intelligence. But as I have since been able to talk to my mom about the entire experience, as an adult, I have grown emotionally in ways that many never do. I consider this one of Barry’s gifts.

I have only recently realized these “consequences” of my quiet childhood. I learned that the longer you wait to speak, the harder it becomes to ever speak. Just like anything else, communication takes practice. That is even more true in the case of emotionally charged conversations. I am so happy with the relationship my mother and I have now. Once I was able to see and understand my experience, my mom became my best friend. She is now usually the first person I want to talk to with any type of news.

Join Lexie and 3 other bereaved siblings on 1/27 for What Siblings Want a CPN Zoom Room on the sibling experience.

CPN has many more resources on the sibling experience in our Sibling Unit