The After

My thoughts this week are a little different, so bear with me…

September is over. It is truly the busiest season of my life. As you may well imagine, life with 9 crazy kids, 2 rowdy dogs, a nonprofit, and a small business is going to be busy year round. But Gold Network’s pivotal events in September and the daily seeking out of opportunities to promote Childhood Cancer Awareness Month have turned into a full time job.

And then, all of a sudden, the calendar page turns and September is over.

So many ask me, “Are you recovering? Getting rest finally? Are you glad it’s all finally done so your life can go back to normal?” And the answer is an unequivocal “YES!”

For many reasons, this September was exceptionally hard for me. It hit me this week how this whole abrupt halt after a season of intensity is such a mirror of the perceived “end” of our cancer journey.

During treatment, there is no letup. Clinic, port access, labs, chemo &/or radiation, therapies, in the car, fevers, ER, back in the car, isolation, neutropenia, lose the hair, regrow the hair, lose the hair again, spinal taps, scans, bone marrow biopsies, nausea, steroid rage, pain, insomnia, more fevers, more ER visits, more hospital stays, more chemo, another 200 miles on the interstate…. Lather, rinse, repeat. That’s just what life looks like for the months or years on treatment.

People observe from the outside, “That looks really intense.“ “I don’t know how you do it.“ We don’t know either. But we don’t have a choice. (Although I DO actually know how we do it…His Name is JESUS.)

And for some, the cycle never ends. Some children have chronic or recurrent cancers that never go away. They stay on chemo indefinitely, and are closely monitored by specialists. Others have significant impairment from their cancer (or more often, their treatment) and they must endure life-altering long term therapies, surgeries, and/or disabilities.

And then there are the friends we’ve lost.

That pain never goes away. The loss never goes away. The hole never goes away.

But for many of us, cancer treatment comes to an end. There’s a party at the hospital, a bell is rung, and people change our label from “warrior” to “survivor.” Ding-dong-DONE! Everybody celebrates a hard-fought victory, and now we can all get on with our lives.

But is it really that simple? As simple as the turn of a calendar page?

I can only speak for myself. It wasn’t (and still isn’t) that simple for me. Treatment felt like being on a terrifying tightrope for three years, surrounded by a coaches and trainers and safety harnesses and a net on every side. And when treatment is over, all the safety gear and nets are packed up and put away and everyone goes home from the circus, but you’re left up there on the tight rope. Alone.

Some of “your people” aren’t your people anymore. There’s no more meal train, no more T-shirts, no more support bracelets. Everyone else’s life has moved on, and honestly, you’re GLAD for them! You wouldn’t wish this journey on anyone, and you’re glad they can’t understand the silent screaming that still wakes you up at night. What if the cancer comes back? What if the doctors missed something? Where did that bruise come from? How do you know if his platelets are low? Does he look pale? You’re supposed to be trusting God, but you feel helpless and terrified. Not to mention how the most random “nothing” can send you spiraling and gasping for breath.

And what of the other casualties from this war that’s over-except-that-it’s-not? What’s the condition of your extended family? Your marriage? Your other kids? How are your finances? Did you take care of yourself while you were fighting for the life of your child?

All I’m trying to say is that it’s never really over. We march on because we have to. We turn the page of the calendar and put our yard signs back in the garage. The polka dots come off the bus, and the gold shoes go back on the shelf until next year.

Everybody’s walking through something. Everyone goes through their own personal refining fire and comes out changed. Not everybody walks with a limp that you can see. Some people suffer inside and you would never know it. So we have to be kind to one another. It’s OK if their healing process doesn’t look like yours. Not everybody can just “get over it”(whatever their “IT” is). Extend more grace than you think they deserve. Ask good questions. And then LISTEN. Instead of telling someone you’re going to pray for them, PRAY FOR THEM! Everyone is looking for the right place to take their broken pieces.

Love people well. Your people and other people’s people. And let’s help one another carry our broken pieces to Jesus.

I will give thanks to the Lord as long as I have breath in my lungs. He has never left me. In the crisis. In my questions. In my wrestling. In the waiting. In the after. He is FAITHFUL.

Thanks for giving thanks with me.

“The righteous cry out, and the Lord hears them; he delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit.” (Psalms 34:17-18)

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” (2 Corinthians 1:3-4)

One thought on “The After

  1. Truly spoken, my precious friend. Still on the tightrope and no safety net. Never off the hook. Childhood cancer Mom PTS – always vigilant about any changes. Even more noticeable after looking at all those beautiful pictures of the precious children who didn’t survive – especially during the events each Sept. I remember you driving back from Children’s and making a birthday cake as soon as you got in the house, for one of your children. Memories seared into your brain by fear – especially when Sawyer first got admitted and that Christmas when he was in so much pain, and reacted to the Morphine. Even scary as Sawyer got better – port out, less frequent visits, eating fresh veges and fruits, etc. I cannot tell you how grateful I am for you continuing to put one foot in front of the other on that tightrope, and exposing your tender heart, so that others in similar situations can find grace and support, and many more people will think more about Childhood Cancer Awareness – because you made it personal. Love always and many prayers, little Momma.

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