When I was 4, I was excited to be a big sister. When I was 6, I made up a pretend game called “Blind Lea”. When I was 9, I told my teacher I wanted my sister to die. When I was 12, I was angry, at my parents and my sister. When I was 20, I realized I didn’t want to be a graphic designer. I knew I wanted to help families with children with special needs. Today, at 30, I know that I am who I am, professionally and personally, because of my sister and my journey as a sibling. Every sibling of children and adults with disabilities is on a journey. This is the story of my journey, and where it has brought me, so far…
My sister, Rose, was born at 31 weeks gestation. I was 4 years old and I had no clue what was going on. Rose spent a month in the NICU, while I was busy having fun with my grandparents. I still remember the day Rose came home from the hospital. I held her on my lap in our living room, which was painted blue, with my mother’s artwork hanging all around us. I was so excited to be a big sister.
A scan of Rose’s brain revealed periventricular leukomalacia (white areas on her brain). At the time, no one could predict how this would affect her, which was very difficult for my parents. At 8 months old, Rose was diagnosed with infantile spasms, and later, she started having types of seizures. As time went by, Rose was diagnosed with cerebral palsy, developmental delay , and a vision impairment. Rose’s medical team, therapists, and my parents tried many interventions, including medications, injections, hospitalizations, and therapies. I remember she would cry, a lot.
My parents amaze me. They still do. In the first few years of Rose’s life, I don’t remember feeling the stress or sadness that my parents were feeling. I have wonderful memories of my dad teaching me how to play football in our playroom, listening to Paul Simon. I remember doing art projects with my mom. She would even let me do her makeup (which never came out so good). My parents always made 1-on-1 time with each of them, which was very important on my journey.
I believe it was because of this 1-on-1 time that I was able to express the difficult feelings that I was starting to have as the big sister of this complex baby. I remember going on a walk around the neighborhood with my dad as he pushed Rose in her stroller. I created a pretend game that we were going to play. I was “Blind Lea” and my dad had to lead me around by the arm and help me get back to our home. My dad played along, supporting me, as I processed these big feelings that I was experiencing. I was unable to articulate them, but because my dad was open to what I was able to communicate (my need for this therapeutic play) he played along, pushing Rose in the stroller and leading “Blind Lea” home.
As I continued to grow up, I started to notice that my family was not “normal.” I started to get jealous of my peers who had “normal” siblings. I even called our adaptive van our “spaceship.” It was very hard to understand why my family had to be different. In third grade, I made a comment to my teacher, which I now see as a true illustration of where I was in my journey. I wanted my life to be “normal”, I wanted my parents’ life to be easier, I wanted to be like my friends. I told my teacher that I wanted Rose to die. She quickly called my parents, and I was sent to counseling. All I remember from counseling was playing board games and talking about passing notes to my best friend at school. By bringing me to see a counselor, as much as I complained, my parents were doing what they thought would help me at that time. Looking back, that is all I could have asked for: people to notice that I was in a tough place in my journey.
These days, my mom and I joke about how we really disliked each other during my middle school years. We joke now, but it was not a joke then. As if those years aren’t hard enough, add a sister with severe disabilities into the mix. I was angry. I was angry that my friends were learning cool things from their older siblings and getting mad at their younger siblings for wanting to be as cool as them! I was angry that my parents had to focus on Rose. They worked so hard to support her in school, at home, at outpatient therapies, and at medical appointments. I was angry at Rose for making my parents’ life hard. I was angry that I didn’t get to have a “normal” relationship with my sister (sometimes, I still am).
Looking back at my teen years, I am grateful that my parents let me be myself. They encouraged me to pursue my own interests like cheerleading, art, softball, and hanging out with friends. They allowed me to go on vacation with my friends and their families in the summer when it got too hard to go on vacations with Rose. My parents encouraged me to be independent and they would remind me that Rose was my sister, not my child. This was powerful and important on my journey.
My parents’ ability and active choice, to let me be independent and live my own life allowed me to go away to college. I was 3 hours away and I loved every minute. I studied art, met my (now) fiancé, joined a sorority, and made lifelong friends. I didn’t realize it at the time (because I was busy having too much fun) but I was also on my way to find out who I would be become as a professional.
During my summer break after my freshman year, I had a graphic design internship. I was designing a poster for classrooms. I distinctly remember thinking, “I wish I could go into the classrooms, to meet the kids, the teachers, and the parents”. I went back to college that fall and added psychology as my second major. My career started there.
Today, I am the Boston Regional Consultation Program Coordinator, one of six coordinators across the state. I work with families in the Boston area who have a newborn to three-year-old child with complex health care needs. I provide family support, resources, consultations, family events, and referrals for these families. My ultimate goal for my program is to create a feeling of “home” for my families, where they can connect to each other, build friendships, and feel supported.
Today, Rose is almost 26. She lives at home with my parents and attends a medical adult day program. She has a home health aide for a few hours per week but aside from that, my parents do everything for her, including feeding, bathing, toileting, dressing and entertaining. She has recently developed some significant gastrointestinal issues and still occasionally has grand mal seizures. Rose loves the Beatles, tearing up magazines, and going grocery shopping with our parents (especially with our dad).
I am still on my journey as a sibling. I am incredibly happy in my adult life; with my job, my friends, and planning my upcoming wedding. As a sibling, I worry about my aging parents and Rose’s declining health and strength. I am (still) jealous of my friends, who get to enjoy their adult relationships with their siblings. It is hard to think that my fiancé (an only child) and I will never have biological nieces or nephews. Thankfully, we have many good friends, who will allow us to spoil their kids as honorary “Aunt Lea” and “Uncle Matt”. It is also hard for me to see my parents with their friends–when their friends talk about their independent, adult children, while Rose is sitting there with them. As I said, my parents amaze me. I know we will get through the next stage of life for our family, together.
I am who I am because of Rose and my journey as a sibling. Rose and my parents made me compassionate, empathetic, positive, energetic, and grateful. If I told this story at ages 4, 9, 12, or 20 it would sound very different, because I was in different stages of my journey (and also because my writing skills have improved, I hope). I invite anyone reading this to think about siblings of children with special needs, with consideration of their journey. Be open to what they are able to communicate, which may be through play, art, behavior, or words. Please remember that their journey will change, and evolve, and it may just make them who they will become.