I am not sure when I knew I’d get through some hard times with my marriage to Julian intact but I am sure I thought it would be when we said, “Yes” and “I do” in 1994, but it wasn’t. That day as people laughed and smiled around us and I happily bounced up and down when the minister declared us married, I’d only pictured the “Better” of the Better or Worse scenario I vowed to that day.
When I said those words that beautiful day in June to my beloved, I wasn’t thinking clearly. I was in love and being in love had seeped something into my brain and made me utterly stupid.
It’s been challenging raising Gage and Quinnlin, our kids who have complex special needs including failing kidneys and livers. Throughout our 19 years of marriage (or the more impressive nearly 20 years) I’ve often wondered if I can declare the one moment I knew for certain our relationship would be long-lasting.
I met Julian outside of the apartment buildings we lived in when I was 26 and divorced for a couple of years and actively dating around. That sounds bad, but it’s the truth. If I met someone that intrigued me for any reason, I went out on a date. Julian (then named Jeff, after a dog, long story) didn’t intrigue me a bit. Maybe it was the not ideal close proximity of our living quarters as we could see into each other’s windows with little effort, maybe it was that he didn’t seem interested. Then he became interested and wow, was I ever intrigued.
On a Saturday night I sat outside with my mean, badass 12 pound dog Cleo refurbishing a kidney bean shaped (oh the irony) coffee table. Years later I would learn Julian threw an empty 12-pack beer carton into a huge trash bag so he would have a chance to walk to the dumpster and strike up a conversation. At the end of our conversation, with what appeared as an afterthought, he leaned back around his opened door and said, “Hey, you want to go grab a beer?” I did, obviously, which led to more dates and a lot more beer. Doesn’t every great romance begin with a dumpster and beer?
We had a 3 year plus romance that involved a lot of drama. We dated other people, had a 3-month break in which he figured out he was undeniably in love with me, and we lived together for two years before he proposed on New Year’s Eve. It was the New Year’s Eve before the start of the absolute last year I was giving this man who was not letting our relationship progress.
Twelve hours after his proposal he asked me about the amount of my debt so we (he) could pay it off before we married and he wondered if I wanted children. He called my dad and pronounced our last name wrong, spilled hot coffee on his bare chest and then asked me to never prepare the grits that’d I’d been making during our courtship. He woke up that morning with the dismal realization that he would have to eat them for the rest of his life. This story of the bliss after the night he proposed? Not a lie.
Maybe I knew our marriage would survive when he held me on our filthy kitchen floor while he rocked me back and forth as I was weeping and told me I was the right mother for our 9-old-son, who was suicidal. “You are the only one who really knows him, you are doing right by him, and you are the perfect mother for him. Don’t worry, because when you don’t know it, I know it enough for you.”
Perhaps it was when I was holding our days old daughter, discussing her diagnosis and how we each unknowingly passed on a recessive gene causing polycystic kidney disease and the doctor said, “With kids like these, you have to take them home and love them as long as you have them.” I remember our eyes locking with disbelief. No matter how many times I write about this experience, it does not get easier. I’m at peace somehow knowing no one besides Julian can ever share and understand that devastating moment with me.
It might have been when I heard the words “developmental delay” as I held my beautiful 18-month-old son in my lap and a geneticist carefully measured the width between his eyes and ears and the bridge of his nose up the forehead. Minutes later, the same geneticist declared there were eye and ear spacing concerns, and asked if there was any chance I could be blood related to my husband. No, by the way, there isn’t.
Maybe it is the humorous times that bind us together. I remember the time Julian was eating French fries in the back seat of our car while holding a throw up bucket for our sick son, and when we joked about how we forgot an entire year of our marriage – we skipped number 16 altogether – and about how we know we’ll stay together because we’ve agreed that the first one who leaves the marriage has to take the kids. “I’m not doing this alone!” we’ll both say.
It might have been when we cried and held each other tightly when we realized both of us wouldn’t be able to donate a kidney to either of our kids. Rarely falling apart at the same time, I snapped out of it and said, “We’ll find another donor, we will.” We did. In in 2007 Gage had a successful kidney transplant because of the generosity of Jody, a member of our church.
In preparation for our her kidney transplant a year and a half after her brother, Julian held our daughter down for a blood drawn confidently and calmly whispering in her ear, “Quinny, it’ll be over quickly sweetie, just a few more seconds.” That was another day, on a long list of days, that I witnessed the love of my life shove down his own fear to comfort one of our kids with the confidence he didn’t feel on the inside. His confidence was the same on Quinnlin’s 8th birthday as she was rolled away from us to get a new kidney from Cheryl, (another generous) church member. They’re Methodists, in case you’re wondering.
Still, it could have been when Julian was laid out on the floor, restraining our combative son while we were admitting him to a psychiatric hospital to keep him safe. While Gage was screaming to be let go, my husband held tighter, tears streaming down his face, saying, “Gage, quit fighting me, I have you, you’re safe.” Then again, it might have been when Julian looked at me a little while later when he forced out a barely audible, “I can’t believe this. How is this happening to us?”
Some of the joys we celebrate seem easy to everyone else I suppose, but we know what our family has had to go through to obtain the first steps and words, the skills needed to pick up a single tiny Cheerio or string 10 beads on twine and our kids’ hard fought right to be heard among their typical peers. We were together when we heard that our kidney donors were approved to donate to the kids and when we knew our son was out of immediate danger of killing himself, and we’ve been together witnessing our kids’ successes as they mature. We know that as we celebrate transplanted kidneys still working, the kids will need another and another, as well as new livers. As much as the sorrows sometimes seem overwhelming, they are the reason the joys are the foundation of our dual gratefulness and our seemingly desperate need to appreciate this life, together.
My husband laughs when I say that between he and my other husband, he’s my favorite. He can handle me saying I have a Twitter Boyfriend, a Doctor Boyfriend, or Girl Crush. I love that we can joke about failing kidneys, holiday emergency room visits, mental hospitals, and how we’re – wait for it, be jealous – on the Top 10 Customer list of our pharmacy. We can laugh about all aspects of our relationship and most especially our shared, tragic experiences. There are no other people we could each be with that can ever understand the equal parts hilarity and ridiculousness that has been our life together. There’s a certain comfort in knowing that only the two of us shared in it all.
That makes us pretty much ruined for other people, doesn’t it? Which helps with the longevity of our marriage because we know there aren’t any other people out there that would have us with our baggage.
And that is just fine with me.
Three kids in the world have the syndrome our kids have and two of them are ours. While we’re obviously really horrible playing the genetic lottery, we’re pretty good at the marriage game.
Well played Julian, well played.
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