I am currently failing miserably as I try to wrap a pretty, pink 21 champagne glass along with a Disney soft toy of the chicken Hei Hei from the Moana movie; the last one on the shelf at the Disney store which I purchased yesterday with a heavy heart and the all too familiar swelling in my throat that I routinely suppress in the hope that I can make it through the 12th of September without cracking too early.
The root of my heartache goes back 21 years, when I had just started primary school. I was five and my middle sister was three, and both of us excitedly awaited the arrival of the baby in mummy’s tummy, who would provide the much desired third addition to our princess/Barbie/make believe games.
I’ll spare my mother the haunting memories of my youngest sister’s birth day and skip to the bit where a very sick wee baby was born and placed in an incubator rather than the arms of my parents. Doctors with deadpan faces confirmed that “something had definitely gone wrong” yet failed to identify what exactly that was. For the next three years my middle sister and I knew better than to ask when we would get to play with the third little princess that was promised.
The medical diagnosis was brain damage, but their predictions of non-survival or severe lack of speech and cognitive abilities were overturned when our baby sister fought her way out of a coma and recovered enough to resume our altered version of family life.
Brain damage in a baby that early on means that my middle sister and I celebrated our youngest sister’s “inchstones” no matter how late they were accomplished. We quickly learned to hang back from running ahead with our friends at the church BBQ and instead took our unsteady little sister by the hand and guided her wobbly steps towards kids who shared her age, yet were strides ahead.
Jealousy pierced our hearts when our peers’ siblings joined the same mainstream schools, yet we recited the routine explanation that our little sister would have to attend a different school instead of completing the triad of grammar school educated children. We developed an attitude when friends asked too many questions, and we put a firm stop to anyone who poked fun at those they didn’t understand. Early on we developed the art of concealing our grief in order to permit our broken parents a few moments of despair. The experience of meeting new people was laced with a dread that at some point the conversation would turn to your story and the need to explain the extra dimension to your family life.
21 years on and we are truly grateful for the shining beacon of light in our lives. We give thanks everyday that our youngest sister taught us a compassion that knows no bounds.
But forgive me for just five superficial minutes to mourn the fact that my 21 year old sister will show more excitement upon opening the soft toy from the Moana movie and be more grateful for a gift of Minnie Mouse pajamas than we ever felt about VIP entry and an expensive bottle of champagne on our 21st birthdays.
All milestones are difficult when you have a sibling with special needs. Each birthday reinforces my fear of the uncertain future my youngest sister faces, and a paralyzing sadness that she may never experience the same life events as me.
Normally, I shift my focus to the positives, of which there are honestly so many (and I promise to document these in a later blog post). However, for now, I’ll pour myself a gin and raise my glass not only to my youngest sister Beth on her 21st birthday, but quite unashamedly to myself and my middle sister Lucy, the unsung heroines; the sisters to a sibling with special needs.
Author: Rebecca McKinty
Author Bio: 20-something trainee tax advisor from a tiny city called Belfast with a fondness for gin, coffee and girl power. Blogging on anything from food and films to people and politics with the underlying aim of inspiring and empowering women from all walks of life.
Link to social media or website: https://girlscantthrow.wordpress.com/