By Joey Papa
On October 23, 2015, I started a video blog series to share with anyone who would listen the lessons I had been taught by my 3-year old daughter, Canaan, who was born with significant special needs. Little did I know she would die 7 days later.
Let me take you back to start.
June 25, 2012, my wife, Nikki and I had our fourth child. We had no idea before she was born that anything was going to be wrong with her. Our first three kids were born naturally without a hiccup, and then… Canaan. (Her nickname is Boogs.) Canaan burst into our stable world and disrupted everything we had ever known. Her life forced us to face every fear, challenged our beliefs, and tore the curtain between the temporal and the eternal. One thing was loud and clear. She had come with a message for us.
Her name is from the Hebrew scripture. Canaan is the land that was promised to Israel but required a fight to obtain it. It took years of fearless tenacity and unbridled ambition for the Jewish people to inherit it, but eventually they did. So it was with our Canaan. She required us to see beyond the physical, to touch the wordless place of true communication and love through the hurt, the pain and the requirement of losing our lives.
Our dreams, aspirations and projections of what our family would look like were suddenly erased from our false sense of security. We didn’t know what any of this meant. What was wrong with Boogs? How long would she live? Would she ever be able to eat, walk or tell us that she loved us? The questions were endless and at times would turn into mental torture, yet there seemed to aways be one consistent answer: love.
Not the pseudo-fuzzy kind you see in over-inflated media, but rather the “I am more concerned about your well-being then I am about mine” kind of love. The kind that goes to bed at 10PM and is completely “okay” waking an hour later to take an all-night trip to the ER. The kind that sleeps on the hardwood floor next to your crib for months on end just to make sure you keep breathing. The kind that has the audacity to believe that you are more than your body— that the real you is unseen but very much experienced.
She taught me how to love deeper than anything I’ve experienced in this life. I learned that the more you sacrifice, the more you love, and the more you love, the greater the pain when they’re gone.
Boogs has only been gone for 3 months and yet it feels like a lifetime ago. It’s been 3 months that I haven’t had to put mousse in her hair, pick out her outfit or drive her to school (her favorite place on earth). There have been no midnight alarms, feeding pumps to prime, medications to give, or doctors to call. It’s been all too quiet — too normal. At times I feel numb or like I’m in a dream, while other times I feel as if nothing has happened.
Some mornings I wake up and it feels like a knife is stabbing me in the gut with a deep sense of loss and shock. I’m not sure my psyche will ever grasp the reality that she is gone. It keeps thinking she’s at the hospital or at school, but then I quickly realize she’s never been out of my care for that length of time; then my mind realizes she’s not at any of those places.
My process in grieving has been unique for a number of reasons. First, Canaan was medically complex from birth, so I’ve always held her life very open-handedly. She always seemed to be on the edge of death but never took the plunge. Second, she spent more days in the hospital the last six months of her life than at our home. The decline of her health caused me to desire the physical hell she was in to end. Lastly, I knew she wanted to go. I knew she was tired, not just in body, but her spirit was weary. She was drained from the constant onslaught of her health. The last two months of her life I knew instinctively that she knew it was time to part.
And so we did.
October 30, 2015 at 10:07PM, Canaan left her broken body and entered perfection.
I had a strong sense as she was dying that she would make a greater impact in her death than she did in her life. During her funeral, my wife and I knew that while the medical and emotional burden of caring for a medically fragile child had been lifted, a new burden was given us.
Canaan passed us a baton. She sent us on a mission— to give voice to those like her. My wife and I are compelled to raise awareness and help change the perception of society towards children (and adults) with special needs. We want to help people see the miracle that occurs when you dare to risk human connection with a disabled child. Canaan taught us that we needed her just as much as she needed us.
In honor of her life, we have set out to discover the message that special needs children have come to teach us. (We like to call them the Messengers of God.) We are currently producing a feature-length documentary that explores these messages and gives a voice to those without one. The documentary is called “In the Land of Canaan” and will hopefully be ready for distribution late spring 2016.
In tandem with the film, we are establishing the Canaan Foundation, which will seek to eradicate the prejudice that exists societally towards people with medical needs.
These efforts have given us new life in the midst of death. Every time I am able to see beyond the body of another human and honor their true essence, I see Canaan.
Joey Papa is a husband, father of 5, filmmaker and advocate for children with special needs. He hopes to uncover and eradicate the social prejudice towards people with special needs. Learn more about In the Land of Canaan. Find Joey on Facebook.