The feeling many siblings have but especially those with special needs siblings. Lily was two when her sister Harper, the love of her life, was born. Lily’s heart was broken when the sister she thought she had began to suffer from intense seizures, multiple times per day. Seizures and other symptoms of a debilitating disorder prevented the multitude of plans Lily had made for herself and Harper while growing up together.
As parents we do the best we can in trying to make sure Lily has her own individual activities and her special time with us, while Harper has the same, yet different. Most importantly, they have opportunities to enjoy time and activities together beyond simply occupying the same space.
When Harper turned one we started Hope4Harper for the purpose of research and awareness. Lily has always been included as part of this journey. Her role in Harper’s life is an irreplaceable one, not only for Harper’s growth and development but her future care as well.
The question we will always be asking as parents is how do we move forward without creating resentment towards Harper from her siblings? After observing my annual planning of a 5K fundraiser for seizure research and epilepsy awareness (Run4Hope), Lily came to me one day and asked for a “Run4Lily”. Initially, I was upset but after some discussion with her I discovered it wasn’t that she wanted to take away from Harper. Rather, after spending more than half of her life in a special needs world that includes epilepsy-related awareness and fundraising, she wanted friends and family to come together for an event that did not focus on Harper, but on her. She also asked for a webpage of her own like Harper has.
Recognizing that, as a sibling of a special needs child, our oldest child has a need to be her own person in her own right…to not be defined only as “Harper’s big sister Lily”, but to just be Lily. And maybe have others recognize and celebrate that too. This is why we have created Love4Lily.