Medically Complex Marriage
photo by Scott Meyers
I don’t think it’s nice to talk badly about people behind their backs. Which is why I’ve asked my husband for his blessing to publish this article. Here’s the thing, I’ve gotten so many comments and messages about how strong we are as a family, and I can only imagine it looks that way in the one or two pictures we have on social media together as a couple. I guess I just figure everyone knows that relationships aren’t always perfect, and that they require a lot of work. But nothing could have prepared us for the kind of work we would have to do, day in and day out, to keep our marriage from falling apart while raising a chronically ill child. With no rule book, and no idea what each day will bring, we are just figuring it out as we go along -- like everyone else.
Some days are pretty normal. We go about our business with work and chores, capping off the day with a home cooked meal on the table, and a freshly bathed baby in bed by 9pm. Most days are not. Most days are a scramble to get to appointments on time while fighting your obnoxiously strong toddler to put in his hearing aid and not pull his glasses off, calling my husband to make sure he didn’t give our son his medications already so I don’t risk overdosing, and completely forgetting to eat breakfast. The logistics of our daily life are like a game of medical Tetris, with feeding tubes, syringes, supplies, and appointments galore. We have to stay on top of ordering supplies, prescriptions, canceling and confirming appointments, and paying the bills. We each get burned out from playing secretary and nurse, and it’s not uncommon for us to argue oversilly things, like, who gets to administer the suppository.
Two grown adults, behaving like children, hovering over a tiny liquid glycerin suppository, while baby lies on a towel covered floor in the background.
Adult Female: "But, I always have to do the things that bother him. He’s going to hate me. I don’t know how he already doesn’t.”
Adult Male: “But, you’re better at it.”
Adult Female: rolls eyes (LIES!)
Both "adults" continue to makes their case as to not giving the suppository until one of them finally caves.
10pm, Adult male and female lie in bed while an incessant high pitched beeping echoes through the apartment. The feeding is complete.
Adult Female: "Can you go turn off his pump and unplug him?”
Adult Male: "Ugh, I just sat down."
Adult Female: "So did I, and I already fed him every other time today."
Adult Male: "I feed him all the time, too."
Incessant, high pitched beeping continues -- while baby peacefully sleeps -- until someone finally gets up to turn off the feeding pump before the baby awakens.
Look, I get it. It is completely childish and immature to whine and moan about feeding your child, turning off an alarm, or relieving our son’s tummy problems. The thing is, we don’t really have a problem doing these things, they’re just manifestations of deeper issues. Issues like not getting a lot of time together, or rather, spending the time we do have together in medical environments. Issues like having to make such heavy decisions, that you can’t even tolerate the mundane ones. Issues like not living the life you thought you’d have, or having the future you thought you’d imagined. Issues like watching your child struggle and be in pain and not knowing who to take it out on so you dump it all on the person who is standing right in front of you -- your spouse.
This Christmas, we spent the only vacation my husband has with his new job in the Children's Hospital, where an Emergency Room visit for non stop vomiting turned into a 5 and a half day hospital stay in the Special Care Unit for Bronchialitis, Pneumonia, and GI issues. While my husband's actions of complaining about being in the hospital and wanting to discharge our son against medical advice prompted a heated debate over our respective sanity's, to him, it was just a way to deal with feeling a complete loss of control. I, on the other hand, was convinced that this was it, the straw that would break the camel's back, the thing that would end our marriage once and for all, and I was ready to call a lawyer. Knowing that an unexpected stay in a Special Care unit was probably not the best time to make any decisions about the future of our lives, I did what any healthy adult would do and called my closest friends to bitch about marriage and cry. This was not my husband's, or my, most shining moment, both individually and as a couple.
Luckily, our parents are very supportive and were able to help us out with a few days alone at a hotel where we were able to see each other as husband and wife again, and act like a couple of honeymooners. We were able to catch our breath, regroup, and talk about how we can approach the next hospital stay in a more productive way -- because this surely won't be the last one. In fact, hospital stays are just one area of stress in our new lives together. In the brief four years of our marriage, we've tackled building and buying a new house, my husband going back to school, an abnormal pregnancy, a chronically ill child, financial planning for our chronically ill and potentially lifelong disabled child, a move to a new state, a miscarriage, and career changes to name a few. Sometimes I think it's a miracle we've even lasted this long. I think, so far, what has worked for us is patience with each other, understanding how we each deal with stress, and letting each other go through those stages of stress, depression, and anxiety without judgment and without rash decision making. A few sessions of marriage counseling, and reminders that we're not each other's enemies, has also been beneficial.
At the end of the day, I think it's fair to say that we've changed, as individuals and as a couple. We're both stronger and wiser than we were when we first met, but it hasn't come without its challenges. Not only has the emotional stress forever affected us, but our physical relationship has changed as well. I was sure that having a cesarean wouldn't affect our romantic life too much, but I was in an immense amount of pain and dealt with chronic Urinary Tract Infections for six months after having our baby. No doctor could figure out why I was getting them, even after having a camera stuck up my urethra to try and figure it out. (That was a fun day.) But, nada, zilch, zero, no answers. I guess we can just chalk it up to the physical manifestations of stress. And what better way to manage stress than to have a non existent sex life with your spouse? Let me tell you how much that helps your marriage. Throw in an unexpected pregnancy where you are put on pelvic rest from week two because of unexplained bleeding, all the way through the beginning of what would be your second trimester because your miscarriage took over a month to complete itself. Nothing like months of bleeding, raging pregnancy hormones, and wondering why your body hates you to make your inner sex goddess shine, right?
Marriage is not easy. Marriage after kids really isn't easy, however, no one ever said it would be, and I think it's completely normal -- and natural -- to have these road bumps. Everyone deals with stress. Everyone. Including your spouse. There's no one way to keep your marriage healthy and strong, you just have to find what works for you. I am no marriage expert, by any stretch of the imagination, and I don't have the answers to a happy marriage, but all I hope to do by airing out our dirty laundry is to show that even a marriage that looks really good on the outside, has taken a lot of work to get there and keep it that way. That it's normal to go through these episodes of dry spells in your romance, to think your husband has lost his mind, or to think you can't do it anymore. But, we vowed to be there for each other for better or for worse, in good times and in bad, and in sickness and in health. And sometimes, it really sucks. But working through the storms together is how you get stronger. Sometimes, you need to hit rock bottom to remember that your spouse is going through the same things you are, and dealing with it in their own way - which might seem completely irrational to you. Take care of yourself, take care of each other, ask for help, and if you can, schedule some time alone together.
Adult male and female return home after a long weekend alone at a hotel and spa. They wake up to the baby crying, and both get out of bed.
Adult Male: "He's probably hungry."
Adult Female: "Ok, can you get him out of bed and change him, and I'll get his feed ready?"
Adult Male: "Sure."
Adult Female prepares the feed for the baby, and even makes a pot of coffee. Adult Make enters the room holding the baby.
Adult Male: "Want me to make some coffee?"
Adult Female: hands her husband a cup of coffee, "I already did."