May was really, really hard. Words are inadequate to communicate what goes on internally and what emotions and memories do to me physically, mentally, and spiritually. It was really hard. And June and July will match or beat May, I have no doubt.
Abigail suffered so much last May. She lost some of her sparkle. Didn't smile as much. Stopped walking. Cried often with pain. Her scans in Michigan at the end of May got cancelled because the radioactive isotope needed for her nuclear medicine scan failed quality control. After a couple days we realized we didn't need scans to confirm what her pain was already telling us--that her cancer was more aggressive than ever before and spreading rapidly. Killing her. How do you wrap your mind around that??? How...how do you try so hard to do everything under the SUN to help your child and still they suffer? Watching her deteriorate was harder than the cancer journey. And the journey was incredibly hard.
Last May, we had just climbed into the van to drive to the airport to fly to Michigan when the nurse called me and said "Don't come! We can't scan her with failed isotope." We climbed back out of the van, unbuckled Abigail, and took our luggage back into the house. It was one more example of how fluid our lives had become....so very unpredictable. It left us with an open, unplanned weekend. I've never been a fan of Disneyland (not opposed to it, just not a fan), but I knew in my heart we needed to use that one last weekend to make a family memory.
I never wrote about our Disneyland trip here in CarePages. It was kind of sacred, I guess. I surprised Aaron by making the suggestion to go to California, but we were in the process of getting passports for every member in our family. Timing was crucial. We needed passports because we were heading to Mexico for treatment. So Friday morning, we drove 3 hours down to Tucson to get our passports made in person. When we left that morning, our fridge completely died. It was dripping water on the floor when we left. As we drove 3 hours south, I did some research and we called our local appliance store and bought a new fridge. After several hours of waiting for passports, and 3 more hours of driving back to Mesa, the appliance people arrived at our house just when we did. We switched all the food from broken fridge to new fridge, packed everyone in the car again, and drove 7 hours over to California (including a 1 hour detour that it seemed most motorists weren't happy about.)
Abigail was such a trooper to stay in the car that long. I sat next to her so she could have my hair. I recorded her voice on my cell phone. As my cell phone was charging, she saw the little green battery icon go up, up, and up and she said, "Look! A green smoothie!" It did indeed look like a glass being filled with green smoothie. Now you guys can think of your phone filling with green smoothie, too. :)
Saturday we carried her all over Disneyland. She rode the carousel. She loved "It's a Small World" and rode it twice. She walked/hobbled through the princess castle 5 or 6 times and was confused why the 'same' princess would ask her name again....and why they kept calling her a little boy. I guess Disney princesses aren't used to bald girls now, are they?
She fell asleep in the late afternoon so I walked her back, slowly, to our hotel. I knew we had just done something we would never do again. She slept fitfully that night next to me, and the next morning was feverish. Tylenol wasn't bringing it down. We left early to drive back to Mesa, and she slept on my lap the entire way. Her body was small enough to fit on a pillow and lay on my lap. She hurt and refused to stay in her car seat. "At this point, who cares?" I asked myself. Come lay on my lap, Abigail, where you will be at least semi-happy in your feverish, pained state. I will hold you no matter what the consequences. They really couldn't be much worse than they already were. Between Tylenol, Motrin, and oxycodone, she slept for the 6 hour drive back. Next time your child cries in the car, give thanks that they are fiesty and healthy enough to cry.
We took her into the clinic when we got home, and for the next 3 days got antibiotics for bacteria--a possible cause of her fevers. It wasn't bacteria. It was cancer. And on June 4, 2013, we drove another 1/2 day down to Tijuana to begin treatment.
That was last May. Somehow, and I'm not sure how the brain does it, but somehow, deeply emotional times are seared into the memory. And just by hearing "May 28th" it can bring up memories. It's not that I choose to look back and dredge up pain. Here's another little secret for those who might want to know: painful memories just happen. Be kind to those who hurt long after the "time" has gone by.
On May 26th one year ago we took the last complete family pictures we'll ever take in this lifetime. We tried to coordinate and look happy. I'm not sure that we succeeded in either, although the pictures may say we achieved both.
Next week is her birthday.
A long while ago I was explaining to someone about grief. They were expressing to me how grief can lock you away, and I expressed back how it doesn't have to be that way. After a lot of thought, study, prayer, and personal experience, I came to a few thoughts of my own.
The concern was that grief is like a steel box that traps people and locks them away from seeing the beauty that is around them. That grief is like an ocean that drowns you and you can't ever get back to living. That it completely consumes you. That is some pretty painful grief. Grief can be like that. I've seen it. It breaks my heart.
But grief can be more or different than that, too. It can be a teacher that humbles you like you've never known. Grief can be a reminder like you've never had before. Grief can draw you closer to God than anything you've ever experienced previously. It can be like that.
When I summarize it, grief without faith is like a steel box. And grief with faith is a fire that refines you and brings you closer to who God wants you to be. It comes down to faith, again.
Faith that this pain has a purpose. That it won't last forever. That I'll learn from it. That God will use it to work miracles in my life and in the lives of others. Faith that His will be done, in all things. Faith that I can give thanks in all things. Faith that others can learn from my experiences.
I remind myself of 'faithful grief' on days like today. Days that hurt so badly, tears come no matter where I am. Days like today when my painful scoop really overflows into my pain vessels. Or months like May was or June will be. I can have faithful grief.