I never met Ryan Kennedy. I followed his journey through my Ependyparents Facebook group and came to know his mother as one of the bravest women I have ever encountered.
Ryan passed away on May 26, 2012, just two days after his tenth birthday. Kimberly Karp, his mother, donated his tumor to the CERN Foundation (Collaborative Ependymoma Research Network). Ependymoma is the same type of brain tumor Lily had and it is the third most common type of brain tumor in children. It can be chemotherapy resistant and even after years of clear scans, it can reappear.
Kimberly lost her son: but she keeps fighting for our children.
Here is her story, told in her words.
Ryan Christopher Kennedy; born May 24, 2002, entered eternal life May 26, 2012. Ependymoma Fighter for 5 years 3 months. 7 tumor resections, 4 rounds of chemo, 2 rounds of radiation. This is a blog I wrote in my personal journal after I went to my first Yoga class in July. I realized why I had avoided it for so long.
Who would have thought that the word Breath could break my heart into pieces? I guess it only makes sense that it would considering the fact that I laid every day with my sweet little boy listening to his every breath, for his every movement, wondering if this would be the last day I would be with him.
Wondering how life would be after he was gone. Wondering, did I do the right thing? Make the right choices? How will I ever breath myself after he is gone? Laying there on my yoga mat trying to rest as the yoga instructor walked around talking about breath.
Your breath gives you life. It spun me back to the moment when I lay there, next to his lifeless body, listening to him breath. Wondering how much longer it would be? My daughter walked into the room. My heart has been broken weeks before as I listened to Ryan gasp for breath telling her how much he loved her and as tears rolled down her cheeks, said to her, "I didn’t mean to make you cry Mckenzie". Everytime she would walk away, he would beckon for her to come back. What pressure to be put on such a young child. How will she ever recover?
But in dying you have no idea when it will be the last breath. We sat there, my arms wrapped around him, stroking his face. Listening and counting every single second when he didn’t breathe. The gaps became so much longer 30 seconds, 35 seconds, 45 seconds…I said to the nurse, I think he is gone, and he gasped so deeply. I chuckled in that moment saying to him, your still here showing me that you can hear me. I leaned over and said, Ryan, "it is time to trust mommy and let go. It will all be ok"….in that moment, he was gone.
The thoughts that go through your mind, why did I say that to him, he would have kept fighting and breathing if I would have just been selfish a little longer. But what good would that have done if I would have begged him to hold on?
I remember grabbing Mckenzie in my arms and holding her so tight. We sobbed in each others arms. I could hear the cries of my husband, of my mother.
The silent moments of listening to him breath, of my mother and husband nervously pacing up and down the stairs back and forth. All of that was gone and tears were being shed as we heard his last breath.
Do you ever think of what the definition of breath is? NO probably not, because up until that moment, we had taken for granted breathing and what it really meant. But when you sit there and you watch your child take his last breath, your whole perspective and outlook on life completely changes and is shattered. The very thing that sustains our life, can take be gone in the blink of an eye.
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