(The 3rd part of an on-going series describing life as the father of a severely disabled daughter)
I keep hearing a statistic that disturbs me. Of married couples who have disabled children, 80% end in divorce. Eighty percent. Only 20% of the couples who vowed “sickness or health, better or worse, 'til death do us part” actually follow through on their vows when life gets derailed by disability. Sobering.
I'm disturbed by the number of people who quote that statistic. I'm disturbed by the fact that I have never seen the study that produced such a statistic. But mostly I'm disturbed by how true it FEELS, and how common is the experience of meeting single parents of disabled children.
I get it. Marriage is difficult without the challenge of raising children with special needs. Add an overdose of doctors and bills and responsibilities and fears and worries and losses and pains—the shredding agony of divorce seems easy by comparison. It's easier to ditch. Easier to run. Easier to find attention or medication in the arms of someone free.
The stress of disability brings out the worst in people. It might bring out the best at times, but Shakespeare got it right when he wrote, “The evil which men do lives after them, and the good is oft interred with their bones.” Our bests are forgotten in light of our worsts. Our failures are magnified by the weight of life-and-death.
My marriage is strong and healthy. My wife and I are deeply in love (and she's proof-reading this, so don't think for a minute I'm being overly optimistic!). Yet we have come through deep waters, and both of us agree that the strength of our marriage is due entirely to God's stubborn work in our hearts, His enduring grace, His provision of peace, and His promise of life and joy. If our success was dependent on our own efforts and abilities, we'd be a mess.
We have found we are healthiest when our marriage reflects the Gospel we both embrace as Christians. I mean this: we have learned to accept each other as Jesus has accepted us, to forgive each other as Jesus has forgiven us, to serve each other as Jesus has served us, and to love each other as Jesus has loved us. He gave His life for us; we give our lives for each other. He reconciled us to God; we seek to be reconciled to each other because of Him.When He sees us, He sees redeemed, forgiven, cherished saints. We try to see each other in that same light, and our hearts are able to overcome every failure, every hurt, every broken promise and expectation.
How does disability prompt the kinds of struggles that destroy marriages? I want to focus on two answers—two issues that have stretched me the most as a husband and father. As I have talked to other dads in similar circumstances, I have found these two challenges are common issues in every home affected by disability.
1. A Radical Shift of Priorities
I didn't enter marriage to play second fiddle. I married Deanna to have a life-long best friend; I wanted her companionship and fellowship. I wanted time with her, and I was willing to pour myself into the relationship with vigor and devotion. If any man was going to successfully win over his wife, wooing her affections and earning her adoration, it was going to be me. I was out to prove I was the “Deluxe Model Hubby.”
We both believed our kids would grow best in an environment where they were secure in Daddy's love for Mommy. They were second place to the marriage. We were a united team, devoted to each other, and from that place of love, we would guide our kids with a proper balance of affection and discipline.
Our daughter's disability severely tested our priorities. It's hard to say, “Mommy and Daddy need time together” when one of the kids is suffering. The care of our daughter took first place, by necessity, and sometimes other concerns bumped me down to third or fourth or fifth in Deanna's list. When we got time together, we talked endlessly about doctors and money and the heartbreaks of seeing our daughter's disease progress. It seemed rare to talk about us—what we loved about each other, how grateful we were for each other.
I would come home from a difficult day at the office to a home in disarray. Emotions running high, chores not done, bills that needed attention and the ever-present “Explanation of Benefits” forms to be filed and argued with the insurance company over deductibles and copays. Quiet romance? Thrilling encounters? That feeling of peaceful companionship? Rare, and growing rarer.
I wrestled with bitterness. What happened to my wife? When would she again be mine?
Deanna struggled with extreme weariness and anger. We had moments here and there, moments of sweet love in which we remembered how perfectly we fit together and how privileged we were to have each other. Then the next day, and the list of responsibilities. The medications. The pump. The chair. The van. The appointments. The pressures that came from dealing with clueless people.
Many temptations are born out of spite. We have faced them all, I am sure, weary and testy, sick of taking second place to a disease, wrestling all the while with selfish expectations and painful disappointments.
How did we face this constant tweak of priorities? We fought. Not against each other, but for the marriage. We still do. We fight for our marriage.
We have had several momentous occasions when we looked at each other and said, in essence, if we're going to make this work, we need to change. We need to meet the challenge. Failure is not to be an option. We will cling to God's grace and each other and strive to be one-flesh as God designed.
After 14 years of our daughter's disability, we have learned how to keep our priorities in check. Cathryn's care needs have only increased through the years; they still do their best to sabotage our marriage. They separate us from each other: I do the early regimen at 6:30 AM so Deanna can sleep, she does the night time version after I'm nodding off from the long day of teaching. But we still fight for time together. A short dinner out while Cathryn rests at home, a 45 minute soak in the hot tub, a walk around our neighborhood—we take advantage of every opportunity to get time.
Did I mention the hot tub? God gave it to us through friends who were getting a new one. Their old one needed to go, and we got it. We had to trailer it home, and the Lord laid it on the hearts of a contractor, two electricians, multiple movers, a handyman, and a pool repairman to get it plugged in and working. What a blessing. Every church should have a ministry of providing hot tubs for members of the congregation who have children with special needs.
2. A Strange Reversal of Roles
When it comes to marriage, we're traditionalists. I'm the head of the home and Deanna is the helpmate. (I'm not going to take the time here to defend these roles; just take it for granted that all the negative assumptions you have about such a patriarchal system are not accurate descriptions of our relationship and we can talk about the details later.)
But with disability came something new: Deanna is the boss.
She hates that designation; she doesn't want that role. But practically speaking, she is the one who knows best about our daughter's care. She keeps track of the docs, the meds, the schedule. She is caremeister. I feel like a buffoon trying to help when she can do it faster, better, and with fewer mistakes, if any.
Her desire is to be MY helpmate, but more often than not, I am hers. I'm the one asking, “How can I help you? What can I do? What do you need?”
My vocation is a simple one. I teach music to kids all day long. Easy stuff, even with middle schoolers. Her job? Caring for our precious daughter. Hard. Emotionally draining. Weighty.
She needs me to help. And that's what I MUST do.
How do we deal with this? For years, we didn't. We were both frustrated and couldn't label the source. At some point it dawned on us that we were living in reverse. I wanted to be a godly leader, but I had to constantly defer to her in an issue that was of supreme importance: our daughter's survival. She wanted to be led, but was the “go-to” person for all things Cathryn. The situation couldn't be helped, but becoming aware of the way our God-given roles were being challenged helped us immensely. Our attitudes toward each other radically changed.
We became much more patient with each other, and slower to take offense. I realized that her struggle with decision-making was understandable. She didn't want to be the chief decision-maker. She needed my input and wanted to rely on my ability as a leader. And she realized why I was so sensitive to criticism: I felt talked-down-to and disrespected. But I needed her coaching on how to provide for our daughter.
Little has changed in the way we do things, but much has changed in our attitudes. We do the best we can to honor our God-given roles in the middle of daily tests, and daily we grow more patient with each other. By affirming our roles, we affirm each other and the gifts we bring to the marriage relationship. And as a result, we KNOW we're on the same page. We're just working out the paragraphs.
We've learned that it is possible to respect roles while sharing responsibilities. It's all about how we treat each other, and how we respond when things are not going as planned.
Here are a few things God has produced in our marriage as we have grown closer together. I commend them to you as simple displays of love and small correctors of misplaced priorities:
1. The Quick Apology—the one that flows from a genuine hatred of being the cause of offense or pain.
2. The Affirming Touch—that reassuring nudge or brush or squeeze offered dozens of times throughout the day to communicate affection, desire, comfort, agreement, mutual sorrow, acceptance, or forgiveness.
3. The Kind Word—O, how many couples we see speaking to each other in callused phrases and disrespect. And how sweet the moment when the words of thanks, honor, devotion, and unity flow candidly from a tender heart.
4. The Honored Morsel—No trip to a restaurant goes by without the two of us sharing food across the table and swapping silverware with each bite. It's a simple way we say, “All is well between us, and the carne asada is especially good this evening.”
In Hebrews 13:4, the writer says, “Let marriage be held in honor among all.” When I see honor, I think “value.” Our marriage is valuable, priceless, and worth every effort to preserve and protect. God has blessed us in this endeavor, and though some years have seemed very dark, we are currently enjoying a high degree of unity and peace.
May God continue His stubborn work in our hearts. Only He knows what tests remain for us.