This morning, on Wednesday the 6th of May, my wife Jessica and I said goodbye to our daughter Rebecca as she took her last breaths and died in our arms. After 14 years of struggle, adventure, and perseverance, our little girl had exhausted the flawed vessel that had always so poorly contained her incredible spirit.

Having evaded its advances several times before, Rebecca was never one to make death’s job easy. Her last months were difficult, as she stubbornly held on to life and consciousness, with fiercely defiant, open eyes and a refusal to give up, pulling air into lungs that were filling with fluid, through the narrow opening of a throat pinched tight. Rebecca had stopped tolerating food and water on Monday, but even when we were sure she had only hours remaining, our girl continued to breathe. We stayed up with her for most of the night, ready for every breath to be her last, but she dragged herself through to one more sunrise before her body gave in and she finally gave that scythe-wielding son of a bitch his singular win after so many times of giving him only a middle finger and skipping away.

Rebecca lived 14 years of full and exuberant life, in defiance of the fact that her physical burdens and limitations were beyond what most of us will ever have to imagine. We were lucky to have been charged with the care of such an incredible being. She made us better than we ever could have been without her.

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3 thoughts on “Rebecca

  1. I’m standing there, in the corner of your room with my mouth shut. These moments, I don’t believe in words. I’m just there with you, your wife and Rebecca offering my presence to all of you. You want to lay some of your weight on me? Feel free, I’m there for you. Thank you for honoring me to do so. Michael


  2. Thank you for sharing this beautiful tribute to your amazing daughter. If you need anything–please let me know.


  3. I share sympathy for you and your family. I feel a need to also share a message of love. I’ve experienced loss of a child. Twenty nine years later the roller coaster of emotions is still ever changing. But the thing I hold dear is the love that child brought me. Her openness to love changed me. It taught me to live. It prepared me to go on without her. It was a moment in my life that unbeknownst to me was a stepping stone in my life’s journey. My second child who literally saved my life, I happened to be 40 weeks pregnant when his four year old sister passed. He was my reason to live. His sister was my guarantee that love of a child could surpass any anger, resentment, or hurt that I was enduring. My third child is special needs. What Life gave me with her is a look into pure unconditional love. A love that is untainted with our world experiences. Knowing her physical struggles and seeing that child rise again and again to meet each day with gratitude. That’s a strength with which I’m continually awed. Often people who know my life’s experiences will say “God only gives us what we can handle” I believe we take what life has given us and we handle it. Be kind to yourself. The need to know the answers to why may never come. Mine haven’t, but I do know that I know love. A love beyond measure.


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