I suppose it’s not everyday you check the mail and your name is in bold letters at the top or an article in a kind of well magazine created by some well-knownish people. And I guess one would wonder how you would actually react to such a thing.
I found my name in print the same day I cut both dogs’ toenails, made lasagna for dinner out of last week’s spaghetti sauce, and sat through my son’s eighth surgery in a year. I finally made it to the mailbox in the pitch black dark, saw the magazine, opened the plastic and read the article in my garage, handed it to Stephen and went to bed. Sometimes your own words are just a little too much when the world might read them - or at least every woman in the world with a kitchen full of open floating shelving and white pottery.
Magazines are funny things. There’s such a confined space for words - words that could fill infinite pages if the whole truth was told. It’s only a snapshot - enough for someone to read in a checkout line and maybe think about on the way home from the grocery store, but when it’s your story you hope someone’s still thinking about it when they unpack their eggs.
I’ve tried maybe fifty times or so over the last three years to sit down and write where we are with Bailey, with my own story, and how that somehow fits together. I can compartmentalize it in my mind, but every time it all collides. Every time it all feels a like just a little too much. There’s so much raw, so much real, so much day to day that we still wade through. I think often the perception is that once the actual cancer treatment is over, life returns to what it used to be. But what actually occurs is that you don’t even recognize life as it used to be - nothing fits - and it’s a very slow and painful process to merge the pieces of what you have left of the old with whatever new you have to create. There is a constant underlying current of cancer that flows through every day life because every day life is what is affected most. Anything you do or anywhere you show up after that point is because of a constant effort to fight that current and move forward.
It was at least three or four years after I was told I had three months to live that I decided I might actually live since I was still alive. It will take a thousand mornings of Bailey walking down the stairs with color in his face and hair on his head to push me past that moment in time where I stood staring at an X-ray - alone - about to tell my very first baby that the trajectory of his life was not even close to what we thought it would be. That moment is a sacred space in time that held the tension between what life was and what it would be. Maybe the truth is you never really get past it that moment, you just live in the middle holding onto hope.
A friend let me borrow the Magnolia Story and I read it while Bailey was in the hospital. I read a lot of books, but for the most part couldn’t tell you what they were about - just words on a page to fill the space of time and to escape for a moment from what I was actually sitting in. In that book, there was one part that stuck with me - the part where God told Joanna to close her shop and stay home - do the opposite of what seemed logical. The day I sat staring at my son sitting on a crunchy white piece of paper on an exam table, ripped from his school and his life, I was looking for logic. While my eyes were staring at a protocol of words that I couldn’t pronounce but would soon become standard vocabulary, my brain was balancing my checkbook in my head - trying to figure out how we would pay the bills. I was looking for logic, and it didn't exist.
It was there that I heard God say, “I will provide.”
He had numbered the hairs on my head and the days after that right up to that very moment where I would have to make a decision whether to trust Him or not. This was now my actual job - not the one I was getting paid to do that I was about to quit. I picked my head up and looked at Bailey on that table - his head staring at the floor. I looked at that stapled paper of cancer drugs and had a strange peace about my purpose here on earth.
Bailey and I watched hundreds of episodes of Fixer Upper in rerun form - or at least I did, and he watched YouTube with his head covered in a blanket. Sometimes he would look up from his phone and say, “Can you turn that off?” But, honestly it was the only thing on in the daytime besides Judge Judy. Plus there was some mental creative outlet of moving furniture in my mind while sitting on the plastic couch that was anchored to the wall.
One day that fall, my friend, Jennifer, texted and said the Gaines were coming to Target house for dinner. Bailey and Lizzy were on similar treatment schedules and they were some of the few people we got to know during our time at St. Jude. Because we lived at home, our lives were split between the hospital and our home and really nothing in between - outside of the hospital, Bailey never saw another kid with cancer. He worked extra hard at not being the sick kid because everywhere he went all the eyes were on him.
He wasn’t super thrilled about the outing but was pretty intrigued about the Target house so he agreed to go. He is also chronically under impressed by celebrities - especially ones that decorate but he will do anything for his mom. Sweet Lizzy gave the kids a tour of their apartment and the Target house. I watched them walk down the hallway on their crutches as Kate hung on every word of her commentary. They just looked like kids with something in common that happened to be cancer.
Chip and Joanna serve us dinner and while Lizzy charmed the crowd, Bailey dodged every camera in sight. He wore a Mississippi State baseball hat everywhere he went - it was like his armor and he hardly took it off. Until that night. They lined the kids up and Chip shaved his head in front of them. I wondered if Chip knew how many of us mothers were sitting out there remembering when we had to do that for our own kids. Bailey was genuinely impressed and even let me take a couple of pictures - with actual smiles.
I happened to be in the lobby when Chip and Joanna were leaving and I thanked her for what they had done for St. Jude and the hundreds of hours of entertainment through reruns she had provided for me in that hospital. She said she would pray for my son.
That winter I couldn’t walk into Target without seeing sweet Lizzy’s face on a TV screen from the video they shot that night. She couldn’t have been more perfect, yet what I also knew is that she was trying desperately to live. I’ll never be able to wrap my head around how the same cancer can take families in so many directions and how that bright light of a girl is no longer with us. What I do know is that she shined bright enough for my kids (and us) to carry a piece of her with them forever. And because she was so gracious to share in what would be such a big moment for her, I saw something in my son I had not seen in months - he was the tiniest bit content and comfortable with who he was. Lizzy had a way of leaving everyone just a little better than she found them.
We met back up with Chip and Joanna last spring when they came back to St. Jude. I had hoped to see them, one so the could see the mop of hair on Bailey’s head and how much healthier he looked, and two, so I could tell her that I found solidarity in her words. I got to do both. They recognized Bailey from across the room, even though he tried really hard not to be recognized, and we chatted for a minute. Mostly I watched how gracious and kind they and their Magnolia staff were to every single person there.
The magazine thing just kind of happened. I still can’t for the life of me know why they would want to talk to some mom who tries to live some kind of normal life in between all this cancer, but sure. God does what he wants with stories - they tend to reach those who need them.
I did the interview over the phone in my bonus room, in between video calls for work, in the middle of a pandemic. It only seemed fitting for an issue on rhythm considering the rhythm of the world was disrupted. I laughed when she asked me how we function when our rhythm is disrupted. Chaos seems to be our rhythm. There was going to be a photo, but there was a pandemic, so the world will have to guess what we look like. (And my family will have to suffer through Christmas card photos again since using that one is not an option). Plus Joanna Gaines on the cover is probably the best it gets anyway. Hopefully the words are powerful enough to reach whoever needs them.
The funny thing about interviews is that you don’t really know what’s going to come to mind and then out of your mouth. And after that, you wonder if what you said makes any sense at all or if it was too much - I was scared to read it. I am very protective of Bailey’s story - the part that’s his to tell. I can only tell my side - the perspective of a mother who survived cancer only to walk her son through the same. But what I did settle on that day is that for the first time out loud, I talked to this stranger named Megan about grief.
Not the actual grief of losing someone, especially your child. It’s not even a fair comparison and I cannot fathom the hole and despair of loss that my friends feel and go through on a daily basis just to push forward with life without their baby.
However, there is so much grief associated with losing the idealistic view of the life you had in mind for your child - the acceptance of how differently you will now look at him and how differently you will need to think about his future, all because of one single X-ray. It’s a slow and painful process to do the living and the grieving simultaneously - to hold the joy of his accomplishments and the loss of the life and the life you thought you wanted for him at the same time, all while encouraging him to do the same. I tried to give it another name, but that’s the only one that fits. And the world does not give enough permission or time or space for this emotional loss.
It is also a gift.
Yes, a gift. This grief sets a rhythm for us to continue. It pushes me forward as a mom and makes me look deeper into who my children are as individuals - to really fight for what matters to them and me. It slows me down to take in who they are - to smell their hair, to sit on the swing, to marvel at the golf swing or the YouTube video, to laugh at the jokes, to eat the ice cream. I have a post it note in the front of my planner that I have moved over for three years. It is an apology from Bailey for getting angry one day because he realized he could not do the things he wanted to do and got angry. I see it daily and that square of paper in his handwriting makes me keep going.
It pushes me to look at other mothers differently and see things from a different perspective. My new friend, Megan, asked what advice I would give to mothers whose children were newly diagnosed. I laughed and told her that I don’t give advice. I simply say,
“You’re doing a good job.”
It’s what we need to hear most and what no one tells us. It is what I started to say more often when the instant urge was to fix. You are allowed to feel and be whatever you are that day because no one is living exactly what you’re living. No one is doing it better than you.
Also, a well timed compliment goes way farther than unsolicited advice.
This tiny piece of our story landed in a magazine because of friendship and solidarity and because of the way God weaves people in and through our lives as vessels. No one gets anywhere alone. I can see the faces of the people in our lives in my mind on a daily basis and give thanks for them and the ways they pushed us forward. One of those was Lizzy who opened up her heart to everyone she met and she made me want to be more like her. We don’t get to choose our path sometimes, but to quote myself,
“... in the end, whatever plan is laid out for us, it’s our job to live it.”
I will also fully admit that watching hundreds of hours of a decorating show while sitting in a room on a plastic couch for months on end can make you want to change some things about your physical dwelling. After all, it is much harder to change your emotional dwelling. I’ve got a renovated kitchen to prove it - with closed cabinets because our life is clearly too messy for open shelving.
Kimberly
