My older sister Heidi was born with microcephaly, a rare health condition. Doctors warned our parents that she may only live six years; however, she survived until she was 12 years old. She and I were less than two years apart, and we played closely together. From the time I could crawl, I helped care for her. My favorite place in our family was at her side.
Watching her decline over the final months of her life was devastating. My parents were open about her decline and did not hide the seriousness of it from me, which I think helped prepare me for the reality of what was to come.
She spent her final days in the hospital, moving between the Intensive Care Unit – where I couldn’t visit because I was only ten – and a regular hospital room. I wanted to be near her; so even when I couldn’t visit her, I asked to sit in the waiting room, and I drew pictures for her.
Each night as I fell asleep at home, I worried that I wouldn’t get the chance to sign, “I love you” to her one last time.
Finally, when it was clear there was nothing left to try, our parents brought my younger sister Mary and me to the hospital after school to say goodbye to Heidi. It was emotional and tearful with lots of hugs and lots of signing, “I love you.”
When the doctors took her off life support, nothing happened. She kept breathing on her own. After a while, my dad asked if we could take her home, and the medical team agreed. My parents had driven in two cars, and so I drove home with my dad and Heidi, my arm securely around her slight body, helping her sit upright in the seat beside me. Normally, she sat in her electric wheelchair in our big van. I relished the chance to sit beside her again after we’d been separated by beeping machines, tubes, cords, and ICU visiting rules.
When we arrived home, it was evening and we all helped ready Heidi for bed. I was able to sign, “I love you” and kiss her hand one more time. She died peacefully, in her own room, a few minutes after we left her.
It’s been almost 33 years since her passing, and I still feel her loss deeply. I write this on what would have been her 45th birthday, and I still ache with the pain of missing her.
My family remembers her on days like her birthday and anniversary of her death by watching a video slide show my dad made before she died and sharing memories and photos of her. When she died, one of my fears was that I might one day forget her. I don’t think I ever will.
Looking back, several things helped me cope with my sister’s death – things that may also help other families supporting children through a similar loss.
- My dad bought both me and Mary, who was almost 7 years old, a little photo album to fill with our favorite photos of Heidi. I still keep mine in my nightstand.
- An aunt and a neighbor each gave me journals to write in, and I did write often about Heidi. At first, I only wrote about her in my journals, but later, I wrote about her for some of my school assignments. When I was in seventh grade, a short story I wrote inspired by her won first place in a Los Angeles County writing competition. I continue to write about her as an adult.
- My parents let Mary and me pick a few of Heidi’s belongings to help us remember her. Two of my items are a piece of artwork she made for my birthday and a little golden locket. I still have and treasure them.
- For her funeral, my parents asked me to play the piano as people walked into the church for the service. I was nervous but I remember being proud to honor my sister in this way. Mary and I also drew pictures of Heidi to go on the funeral service program.
- My folks let me pick out the words and image that would go on her gravestone. She is buried where my grandparents lived in Utah. I
don’t get to visit often; but when I do, I take great pride in my part in helping remember and honor her in this way. - A few weeks before she died, I brought home an article from our Scholastic News that featured accessible playgrounds, which were relatively new in 1993. I hated seeing my sister left on the sidelines at playgrounds and I was so excited to show this article to my parents. We talked about how we could build an accessible swing or playground for Heidi, but then she died. In her honor, my parents worked with the Cincinnati Parks Department, near our home, to add accessible features to their waterfront playground. It took time and we moved away in the meantime, but we were able to come back and visit a few times. There was a plaque on the wall dedicating the playground to her. Twice I had work trips to Cincinnati in my young adulthood and made time to visit her playground.
- She died at the end of the school year; but when the new school year began, Mary and I planted a tree for her at a ceremony attended by Heidi’s classmates and our friends. The school staff also dedicated a brick to her on the walkway. At the end of the school year, the yearbook was dedicated to her, too.
On the flip side, one of the most challenging things that happened after Heidi’s death was that our family moved. My dad changed jobs and we relocated, away from the neighbors and school community that knew and loved her. We moved from Kentucky to California a few months after her death, and suddenly I was in a school and neighborhood where people did not know Heidi, or that I had lost a sister. When I tried to broach the topic of my sister with new friends, they wouldn’t know what to say and so I stopped saying anything for years. I felt I had to hide my sister and her death outside of our immediate and extended family because it made others feel uncomfortable.
When I met my now-spouse, Mark, in high school after my family moved to Virginia, he came to my house to work on a group project and asked about a picture of Heidi. When I told him who she was, he listened, asked questions, and was kind. His curiosity and empathy opened my heart to him, and we began dating in college.
When I see relatives or the few times when we visited neighbors in Kentucky who loved Heidi too, I can be my full self. They knew her, and they knew me with her. I can mention her whenever I want. I can ask them about their memories of her.
This evening after dinner, as I have on her birthday in prior years, I plan to show my two young children (one of whom has the middle name Heidi) photos of their aunt Heidi and share a few stories about her. They will grow up knowing that she is a part of our family and a part of my life. I will continue to keep her memory alive.