(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.
Well said, Jim! Thank you for sharing.
ReplyDeleteThis was beautiful. Thanks, Jim!
ReplyDeleteWonderfully shared and know I will continue to pray for you and your family. You all have been and continue to be used by God to inspire!
ReplyDeleteBlessed by this, thanks for sharing!
ReplyDeleteThanks so much for sharing your blog. I love it!! And I love your family. I wish I was more outward about it. But I do love you all.
ReplyDeleteWe very much enjoyed reading this together! And we can relate so much and see the same struggles in our marriage. Constantly fighting for time together and the role reversal. You are an exemplary family and we are glad we met you and could look up to you!
ReplyDelete