Piper's Key - Unlocking Representation for Every Child
We never expect the worst to happen to us.
We protect ourselves in our naïve bubble and say these stories happen to a rare few but never us.
But what happens when it does happen to you? What do you do when your worst nightmare becomes your reality?
I never imagined myself becoming a bereaved parent having to navigate living with grief, yet, here I am. When my Piper was passed away, I had an army of support behind me. They presented two choices: to let my grief overcome my life and sink into a dark hole or learn how to live with it and find other ways to parent Piper on Earth. I chose the latter and founded Piper’s Key, a nonprofit with the mission of gifting inclusive books to children with disabilities that represent themselves in a positive light.
Piper's Key was formed in memory of my Piper Grace, who passed away after 27 days on Earth due to the effects of Spinal Muscular Atrophy Type 0 (the rarest form of SMA). Had Piper survived her rare disease, she would be living with multiple disabilities and would need opportunities to grow a positive self-concept. It was through my grief that propelled me to ensure that my living children were able to say their sister’s name without the heavy sadness constantly associated with her passing.
Don’t get me wrong, living with the ever-present shadow of grief is not easy. It’s a new extension of you that you didn’t welcome and is permanently walking alongside you. There are some very dark days when I have no choice but to sit with it and allow the heaviness to be there. With a lot of therapy, including EMDR, and determination, however, those days have become less frequent and more manageable because I can still say her name every day. Piper’s Key has given me a way to continue to parent Piper while simultaneously gifting the community she would’ve been a part of with a positive self-concept. Since starting Piper’s Key less than 2 years ago, we have gifted over 5,000 books to children with disabilities throughout the US, Canada, and even the Ukraine!
Though Piper Grace will forever be missed but we take comfort in knowing she is unlocking representation for every child!
written by -
Dr. Jessica Hoefler AuD/CCC-A
Piper's Mom and Founder of Piper's Key