For my friends who may find themselves on a similar journey:
Reflecting on Caleb’s short life:
This is the most difficult thing that I do. It has been so long now. Memories are not as fresh and the emotion is sometimes just numbing. Grief is physical and there are natural hormonal defenses that protect us. This comes and goes. Sometimes we are in better shape than others. It is just like an athlete’s life where conditioning is everything. We all have our debilitating moments when our defenses are down; like mine today.
Is it sad that I sit here reflecting Caleb’s life and all I can speak about is grief? I think not. Everyone suffers from grief, just different levels of it. I have had people sympathize with me about grief. Believe me, it is awkward when someone says they lost their grandmother to cancer so they understand. I don’t get angry. This is just their way of trying to relate to my grief. The loss of their loved one may be the most extreme grief that they have ever experienced. I know what they are trying to say is, “I’m sorry for your loss. I wish I could ease your pain.”
Caleb taught me more in four short years than I can ever sum up in anything I write or articulate here. Besides humility, grace, family, love, and affection he taught me what is really important in life, Time. We only have a fixed amount of time here and we need to capitalize on making the world a better place rather than getting bogged down with the distractions of daily drama.
What I have learned?
This experience has caused me to see things a little bit different and in that, I see things that may help others. The first thing is that although there are intimidating circumstances that we face. I like to think that through my experience and loss I am an authority on what the loss of a child does to people. I have been there and witnessed many that I love dearly come unglued and all I can do is watch like a fatal roadside accident. If I can add a glimmer of hope to those people, I want them to know that there is no one that has “your experience,” you are the expert in your walk. This should empower you to trust your heart and make a difference. Knowing this, I think of my time and its value. We should overlook the fears and own the situation (there is no way around it, so embrace it). No one else’s time is more valuable than yours. We deserve a seat at the table of whomever we choose that may be relevant to our mission. If you were across the table from Bill Gates or President Obama, don’t you think that they may be able to learn just a little something about humanity from you? I do. Our experiences are humbling and if you are in front of people they will listen.
What do I have to offer other people?
I am now in a unique position that I see as a benefit, but it could also be a hindrance. I am guilty of adding to a dilemma. When Caleb passed, my wife and I had no clue what to do. We thought it was a good idea to start a legacy foundation to honor our son and help other families. I wish we had never done this. I wish there was a go-to organization, one that is all inclusive, rather than a member organization or a part time venture. If there had been such an organization leader when Caleb passed away, I would have subscribed to that entity to educate and guide me. I could find no such organization and instead, I was forced to figure it out and take on the world myself. Today, parents may be considering doing the same thing we did with a legacy foundation. I am here to say to them, wait a minute, take a breath, slow down. You may not need to do that. There are foundations just like mine that need other parents to get involved. Like us, many organizations need other parents’ help. Many organizations offer you an opportunity to shape their programs with your knowledge and blend it with what is important to them. We have legacy projects for other families within our own foundation and I challenge other organizations to offer the same kind of value. We are ahead of the curve with our experience and I hate to see future families have to struggle for years to figure out what we already know. In Caleb’s honor, I welcome them to join the fight in memory of their own child and stand with us.
What benefits can this community share with all the other legacy foundations? Simply put, strength. If we collaborate and consolidate our resources, we can overcome anything. Keep in mind the urgency of the situation. Children are dying everyday. People cry when they see malnourished babies in Africa and beaten dogs in cages? There is no reason why we can’t get the same attention and the pull of heartstrings like they do?
Author: Rob Whan
Checkout the new website http://www.calebscrusade.org/
As a family with a cancer child we relate to your journey, At this time Jade is in remission yet we understand It is NOT a CURE. We see other families we befriended losing their precious child and besides encouraging words we are helpless to do anything .Just watching their journey is TORTURE .We can only Imagine what you went through and what they are also going through. We are ADVOCATES now for Research, Funding and the ultimately CURES for ALL CHILDHOOD cancers .We Call, Text, Email, Blog,& Write to News Corp., Congress and to everyday people who do not know Childhood cancers are The Number One KILLER of our Children And is on The RISE. WE Honor your WARRIOR Caleb and ALL the other WARRIORS who fought The WAR and lost the battle. WE will NEVER stop until we get what we want CURES !!! GOD BLESS you and your family .Please know WE CARE …
I appreciate you being there and sharing your efforts and kind words. We need to rally the troops and create the urgency that these kids deserve. As I watch friends suffer new loss it is like salt to our wounds. It must stop, we must do better. Please continue to stay engaged.
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Every time I read a story my heart aches a little more. I have been that nurse at the bedside for over 30 years.. That night shift nurse sitting in the dark, holding a hand, stroking a back or holding the bucket. I have been that nurse admitting you for your first chemo and I have been the nurse trying to convince you that everything will be okay as you leave the building… I am that nurse who see’s your pain, your exhaustion, your fears. But, I am also that nurse who hears your child’s magical laughter and I get to witness the most tender moments.. I walk as quietly as I can to try to create an atmosphere of normalcy to a situation that is not normal.
I am so sorry for the pain and sadness that each of you must endure.. I hope one day to make a difference, I may not be able to cure all of the diseases but I hope to in the very least help you Celebrate Every Day and know that you are surrounded by an extra layer of support. an extra pair of hands holding yours and know that when you leave and all is said in done,, we, those nurses, never forget you or your child,, You forever leave a footprint on our hearts.. and we thank you for allowing us to care for your most precious gift.
Thank you so much for the kind words about remembering our kids and the impression that they leave on you and other nurses. I believe some nurses are sent by God to be our guardians in these battles. Most parents are shell shocked by the information overload on diagnosis and throughout treatment. Just a warm smile, a hug or a comforting touch is what we need sometimes. Know that there are more that appreciate you than you will probably ever imagine. I know I was in shock while Caleb was in treatment and I also know that I did not thank every nurse that I should have. I also probably said some things that I normally wouldn’t have but I want all the nurses to know, especially peds/onc that most parents lift you up in their prayers and we all know that we couldn’t have done it without your nurturing guidance and unconditional tolerance. God Bless all the nurses out there and Thank you.
Forever Grateful, Caleb’s Dad