As the weeks dwindle down to mark one year of losing my son, Ryan, to cancer, I have been looking back and thinking hard about what I’ve been taught, or should I say, what was thrown in my lap to learn. Some lessons I never wanted to be taught. Now I carry those lessons around and continue to learn.

Lesson 1. We are a community. Or so I thought.  At first, early in the battle, when your child receives the diagnosis of cancer you eagerly reach out to find other families in your situation. You are hungry for knowledge on a family’s point of view and more importantly how their child is doing. That lesson was amazing. There is an unspoken bond between parents, between children, in this special part of the childhood cancer community. Life on the hospital ward is a beautiful bond.

But later, as Ryan grew sicker and sicker, I learned that some people tend to pull away at a certain point. The bond we shared slowly breaks down. My guess is because they don’t want to see, or are afraid to see, what could happen to their child. They are at a loss for words and comfort, and it hurts too much. They are emotionally unable to travel any further down our road with us. Finally, it seems as if  that special bond is broken.

I am no longer part of the community that consists of the hospital, doctors, nurses, chemo, antibiotics, patch changes, fever watchers, mask wearing, protocol talking, and beautiful little  bald heads. That was my community of hope. Now that Ryan is gone, I feel like an outsider. I feel like I’ve become the face of “what could be.” When they see me walk into the hospital, I get awkward hugs and the “hey, how’s it going?” I’m not upset… I can imagine it’s uncomfortable looking on the dark side of cancer. I feel it must be uncomfortable to have someone like me who has experienced the worst cancer has to offer, shaking their hand or hugging them. It’s just as difficult for me because I see their children and my heart breaks all over again. They played with Ryan. They talked to him. Why am I the face of “what could be?”

My community now consists of grieving parents who are fighting to change things.  Even though we  have days of sorrow, depression and days of not getting out of bed,  we are the community that is honoring our angels,  by pressing on to start our foundations, and movements in hopes that someday no more will have to join us. I’m proud to have the support I have from our community of grief. This experience has opened my eyes to those that are fighting for a cause, for a change, and because they want the madness of childhood cancer to stop.  I have the utmost respect for those  parents that have a child in treatment, or a child that has survived, and go on to create foundations to reach out. The survivors could have easily left the cancer community, but instead they continue to fight shoulder to shoulder with us. Bravo to you! Together, this is our community of determination.

There is one part of our community that has caused concern to many of us. I refer to them as the “left behind” group. They seem to not want to join or collaborate with other groups fighting for the same cause. Some of these organizations have large “followings” and very rarely, if at all,  voice support for any other foundation or group. I will never understand it. In order for the community to be WHOLE, the communities of hope, grief,  determination, and the left behind have to JOIN. Several voices speaking randomly  will never be heard. But if we all speak as one, our voice will be heard.

Lesson 2. People step in more at the end. When a child is about to pass away from cancer it seems the world is more enraged at that point. They want to reach out and help, send gifts, call the media, tell everyone they know…  But, it’s too late!  The cancer has won.   The lack of an effective cure or the treatment itself  ended up killing the child. Either way, it’s too late!  To really be a help, step in before the child gets cancer. Step in before it’s too late. Step in at the beginning and be there through every step. Become educated in the plight of children facing cancer. Help educate others so this nation will collectively want to seek a cure.  Let the media know that everyday 7 children die from cancer. That 36 will get told they have cancer today. Be an everyday hero. Not an end of days hero. Step in now, not later.

Lesson 3. Grief of Losing a Child. The grief of losing a child is like no other grief. It’s a hole in your heart that you learn to carry. Part of you died the day that they died. It changes you. It morphs your very being. Things, through my eyes, look different than they did a year ago. I cry more, I hurt more easily.

I’m no longer afraid of spiders, seriously. I am in awe of their webs and how they build them day in and day out no matter how many times they get wreaked by weather or unforeseen circumstances. Have you ever just sat and watched one build a web? It’s a beautiful metaphor for a grieving parent that lost a child to cancer. We build our webs of life. We have children, that’s one ring of the web. The child gets cancer. That’s a ring that’s been wreaked. We rebuild, we are always rebuilding. We meet amazing families going down cancer’s unpredictable path. We add to the ring of the web. The whole course of treatment is like a web. Parts are destroyed but we always rebuild while catching hope instead of prey. When a child dies from cancer the web is completely destroyed at that point. But then slowly… day after day,  you start to rebuild your web. It’s re-spun by trying to reach out and  connect with other grieving parents and by helping other families that are battling childhood cancer. The framework of our web is build on the memories of our child. My web is still being rebuilt. I’ve had many set backs in this year of rebuilding. I never quit spinning because the last stitch of my web will be when a cure for all childhood cancers is found. Until then, I’ll get as close to the center as I can. I’ll continue working on our foundation, I’ll keep reaching out to families. I’ll keep crying each time someone else’s web is destroyed and I will be there to teach them how to rebuild. I’ll continue to tell Ryan’s story, and  everyday I hope to educate people about GOLD and how they can help raise awareness. The web I choose to weave is now spun with love. Ryan taught me so much. Thank you for that baby boy.

Lesson 4. The Ongoing Lesson.  Lesson 4 is putting it all together! I want to be a community as a WHOLE. I want be an everyday hero, not an end of days hero. I want to continue on rebuilding my web and one day be a part of the last stitch. Life is an ongoing lesson for me. In another year, who knows what I will learn? My hope is that I never stop learning and that I learn how to better myself and the childhood cancer community.

Author: Mikelle Gallier Raffel

Related Article:  There’s more to this story,

 The Rest of the Story by Mikelle Raffel