I recently read a post by an anonymous cancer mom and it said “I think the hardest part of cancer treatment is at the end— when everyone assumes you’re “cured” and you no longer need their help. You’re in your weakest, most devastated state, plus you no longer have the mission you had when you began this journey; to kill the cancer. The cancer is toast; but so are you, and now like a soldier at the end of war, you need help putting yourself back together, only everyone has gone home since they assume the war has been won….”
I just watched a news broadcast on the rising number of parents with PTSD due to the rising number of childhood cancer cases. What a terrible crisis we have on our hands as not a week seems to go by where I don’t hear of another diagnosis.
Resiliency is something I’ve been thinking about lately. Resiliency is defined as one’s ability to adapt. I think when thrown into trauma, it’s fight or flight, and you adapt quickly because you don’t have much choice. However, coming out of a trauma is where you have to sit and sort through all the mess you’ve just been through.
This sorting thing you walk through when the war is over can be tough. In talking to my dear friend, she described it as a puzzle being poured out on a table. You need to start over again by first putting the borders in place and then you begin to sort through each one of the pieces one by one. These pieces are life as it is NOW: Some pieces stay, and some pieces go, because you now see the picture very differently after what you have just walked through. The old you is gone (non-existent) and the new you (the one who has been to hell and back) is sorting through the pieces of this new life your family has been given.
It’s been a while since I’ve posted (9 months since Emmy’s bell ringing to be exact) because this new life has been wild and free. You see, living with a cancer diagnosis forces you to have MANY restrictions and it’s like bowling with the bumpers up. After treatment, the bumpers come down and it’s WIDE open -- suddenly you have to manage all of the things that were put on the back burner for years (like how is my freezer SO dirty— oh that’s right, nothing was a priority except seeing our daughter through). As I sort through these pieces and we begin to participate in group activities again, (and anyone who has run into us knows the first thing out of my kid’s mouth is them telling everyone with excitement what they are now a part of) there have been times when I’m taken back by the secondary griefs of what we walked through. It happened one day as I was picking my son up from a Lego robotics class at our local children’s museum. A mom was walking in with her little toddlers, one on both hands, and the sight of it stopped me dead in my tracks. It was the reality of what was taken from my kid’s childhood. My first thought was, “Oh, how fun!” I don’t even remember those days until I remembered I had two kids on each hand, but it was walking the halls of the hospital - not the children’s museum. I quickly spiraled into a “wonder” of losses and allowed myself to have a three minute pity party for all the things we didn’t get to do while my kids were that age and that age once for that matter. You see, I’ve been told its okay to be blessed, but also be grieving. However, I’m not only grieving the things we missed out on, I’m struggling with survivor’s guilt.
Sometimes I find my new puzzle (the picture of my life) looking like the person stuck in the in-between…. in-between the realities of fighting childhood cancer and surviving childhood cancer. We have been given life---oh thank the lord we have been given life! But the survivor’s guilt and grief I feel for all those who have not survived, or who are just beginning their fight, or in the middle of their fight, or the fear of re-entering the fight creeps its nasty way into my head again and again and it can be so heavy. I can’t just turn my head and look away from others who are struggling and fighting to see their child through to another day. My heart is with them and aches alongside them. Through all those thoughts though, I do truly believe God has gifted us in seeing this world through different lenses than most and while I am so thankful for that, it can be exhausting trying to jump right back into “normalcy.”
There are some days I feel depleted facing the world that doesn’t seem to understand the hard realities of what so many families are walking through, and it feels like betrayal to the ones still in their fight, or the ones who lost their everything in the fight, and to enter back into the “real world.” But my hope is that the people I know that are still fighting their battle see hope that there is another side past the Hell they are living through and they need to walk through it to get there. After walking through the fire, not a day goes by that I won’t be grateful for what is just TODAY. The time past that living Hell of childhood cancer.
The reality of not being defined by what others think is so important or these made up worldly standards (how much money you have, the car you drive, where you live, what school you attend, how much knowledge your kid has, etc …) makes it hard to enter into normal conversation sometimes and hear people talk of these things. I’ve sat in the hospital long enough next to all of those people and I can attest that it doesn’t eliminate or protect you from the monster of cancer. What does help to define the way I view and walk through life now are the SCARS. The ones left on my heart, the ones left on my daughter’s chest and spine, and the ones I looked to through all of the really hard days—Jesus’s scars. The scars—the ones that we carry and the ones that remind me HE carried us through it.
So as we set my borders back in place and sort through the pieces of what stays, what goes, what adds value, beauty, empathy, and goodness to the gift of life we have been given, we remember there will be days where it feels hard to enter into the new normal. However, just like a puzzle with LOTS of tiny pieces I don’t have to have it all together. I am so thankful our God is a god of order and he has ordered our steps through many of days. I know and trust he will continue to do so, every little bit by bit. The picture will slowly begin to come together over time and just as I would give someone else grace, I try to remember to give myself the grace to continue to SLOWLY take the time to pick up the pieces and work on putting this new puzzle back together. The one after trauma and a victory over childhood cancer.
Some days are just busy. I’ll end with another quote I recently read and it really hit home. It was from B. Oakman from her poem, Anxiety Doesn’t Knock First:
“I lied and said I was busy.
I was busy;
but not in a way most people understand.
I was busy taking deeper breaths.
I was busy silencing irrational thoughts.
I was busy calming a racing heart.
I was busy telling myself I am okay (SHE IS OK, WE ARE OK).
Sometimes, this is my busy –
and I will not apologize for it.”