Married...With Extra "Challenges"

By Tom and Sherry Bushnell

We are writing this article in all meekness, not as a couple that has it all together, but in an effort to share our hearts about being married… and having special needs children.

       There is a wonderful blessing for those who have chosen to hang in there with each other, after navigating through disasters.  Statistics show that the divorce rate is higher among families who are dealing with special needs.

We well remember our first taste of this when our daughter was born with Down syndrome back in 1987.  One of the first things they recommended was genetic testing, to see which one of us was at “fault” (or both of us) and to determine our “risk” for having more children with Down syndrome.  Back then we did not know very much, but we did know enough to say, “No, thanks!”  Leaving Tally in her grave after open heart surgery was bad enough, but to medically find the “blame” was out of the question.

  After a few weeks, after the funeral, after the burial, after the meals, the cards, the packing away of her clothing and all the initial attention we received from our church family, the dust settled.  We sat looking at each other and found a distance between us that we did not understand at the time.

Back in December of ‘81, we were married at ages 19 and 18.  Tally died when Tom was 26 and Sherry was 24.  While Sherry was pregnant with Tally (and she died), we were “homesteading”. We were living in a barn, on lots of acreage, producing our own food. We had animals and a big garden.  Tally’s home birth with a wonderful midwife, and her subsequent open heart surgery and then passing to heaven in the big city hospital, caused us to grow up in our marriage… However, as a way of preserving our hearts from further pain, we noticed a pulling away from each other. Even from others who we knew cared about us.

           We had 2 precious boys, 5 and 3.  We loved them very dearly… but our daughter was gone. We found that as a married couple, we responded to grief very differently.  Tom tended to become VERY absorbed with chess… mentally checking out to avoid having to deal with the deep hurt of letting go. Sherry became angry at God, stopped eating very much and became desperate to fill that empty spot Tally’s home-going had left.

Over time (years) we learned to give each other space.  We still shared just about everything. But we realized that we were individuals who needed room to be ourselves, both spiritually and in different interests. Yet we were afraid to launch out.

          Sherry:  I think we had a normal reaction to hurt and grief.  We were trying so hard in our own strength to be strong.  We resolved to keep going... but certain parts of ourselves we kept hidden. It was too painful to let go.

There are healthy steps in the healing process that we all go through.  God designed us that way.  We just all navigate them differently.

Parents dealing with disability grieve too. Even if a child has a learning disability, the loss of parental expectations, dreams and goals for their child must eventually be replaced with reality.  This means new expectations, visions and dreams.  We all adjust to the disappointments in life over time.

       Our first taste of dealing with grief in any way, was in dealing with Tally’s disability.  For a short while, I was in denial.  I was sure that the diagnosis was a mistake. In my dreams everything was fine.  But her weakness and obvious signs of Down syndrome put us in the acceptance camp pretty quickly.  Eventually, we were actually happy about the Down syndrome.  I had worked in special education in high school. We became completely enamored with the whole idea of having one of our very own!

Then she died.  Anger soon took root in my heart.  Anger at our loss, the finality of death, the loss of the beautiful idea of raising a sweet little girl with Down syndrome.  It was time to grow up....time to deal with our raw grief.

       I am sorry to say that I stayed in that anger camp for way too long.  Years. But I did.  6 months after Tally died, God brought little baby Jordan, with Down syndrome, into my life.   I poured all that love and nurture, pent up inside, denied for a time, into this frail tiny little baby boy.  He grew and flourished but I began to see that even precious little Jordan could not fill the gaping hole of Tally’s loss in my heart.  With calm assurance, steadily though, God was allowing a new little flower to grow beside the dark, empty hole.

I still needed to deal with my anger.  I remember staring out the window at the rolling, treeless hills on a long car trip, realizing just how angry I was, and how my frustration was affecting my husband.  I was withholding my heart from him and he knew it.  I just wasn’t sure how to let go of the strong emotions that separated me from God and Tom.

It all boiled down to total acceptance of what God was doing in my life, for better or worse. Once I released my life and became totally broken in my heart before the Lord (maybe then I became submitted to Him for the first time), I was able to walk with my hand in God’s hand, giving my husband my heart, instead of marching faithfully, but stoically beside him.

Moving on a few years later, still working through life lickity-split… after we had adopted Jordan, we had 8 miscarriages one after the other after. 

How could a loving God give me a special baby, take her away, and then turn my body into a device for populating heaven with unborn babies?!

In my heart I carried shame.  My baby died.  Now I could not carry a pregnancy. 

 Our commitment at the beginning of our marriage and allowing the Lord to plan our family, was becoming hard to follow through with. This path was not adding up to what we had dreamed.  I didn't want the option of “no more children.”  Could we honestly trust in His plan, His way? 

          Tom:  We gave up trying to carry a pregnancy,  decided to adopt.  But God had an additional path.  After coming back from India with our newly adopted 21-month-old daughter, Sheela, Sherry became pregnant. With the help of a fertility specialist, she stayed that way 9 months. Zack was born.  After that, the Lord blessed us with 5 more children, each spaced about 2 years apart, and no more miscarriages until much later.

       We adopted one more girl from India.  By now we had 5 in diapers, with teens on the horizon.  Guess that would qualify as busy.

Looking back through our marriage and family life, only the Lord knew what it would take for us to understand with true compassion the needs of the families we would be ministering to.  Our life work, NATHHAN / CHASK, would require a huge amount of understanding that only experience brings.  Grief affects a marriage. Ours was no exception.

In 1990, the first thing we did to ease Sherry’s stress load was that I came home to work for NATHHAN full time.  NATHHAN had grown very fast from being Sherry’s “hobby” into an important part of the special needs homeschooling community.  Another huge thing for Mommy, after I came home to work, was that we made the switch  to paper diapers.  Yup, 5 in diapers was more than my male mind could comprehend… or was it the swishing in the toilet with the cloth variety that put me over the edge.  I’ll never know, but disposable was in for good.

Our struggling non-profit with more directions to go than funds, made life interesting and stressful at the same time.  We honestly learned to totally rely on the Lord for our very food, clothes and direction.  We can truly testify that He has never failed us once.

      Over the years we found our busyness creating more challenges to our marriage.  We worked well together as team.  We could work the socks off other smaller non-profit organizations, with our combined skills.   

Over the next 15 years we traveled across the country and spent more time with the children, with friends, with church family, many new friends, relatives and lots of others, than with each other. 

Tom and Sherry: I guess our highest recommendation for married couples working through grief and maintaining a positive relationship, is make sure both husband and wife are totally submitted to the Lord in EVERYTHING.  This means the little areas and the bigger ones.  It is one thing to lean on Him when disaster strikes, but can be just as much of a challenge with something as simple as physical intimacy.  Rejection in this area is painful for husbands. Just as equally, emotional withholding or physical and verbal abuse from a husband towards his wife, hurts her deeply.

    Bitterness is the enemy.  Be patient.  Allow time for communication…. Scratch that... MAKE TIME FOR EACH OTHER. 

        In our marriage, presently this translates into a weekly date and every other month or so leaving the home to spend the night somewhere without teen drama, the phone, “urgent” messages, meals, laundry, kids scrapping and so forth.

We don’t always have money to spend on a dinner in a restaurant.  Honestly our favorite times over the last few years have been with our cheap little BBQ set beside the river or in the mountains.  We have been driven back into the car by hordes of mosquitoes and have gotten stuck in the snow, but these are all part of our dinner adventures.  And they are OUR dinner adventures. These memories are precious to us as a married couple.

What do we talk about?  There have been times we have resolved not to talk about children,  or work, but just us.  We have to choose to do that. Sometimes we just sit there and if there is hurt in our hearts, it is hard to talk.  At times it might take us almost all the evening to break through the wall of frustration or hurt, before the real issues can be talked about.

 Exhaustion, emotional and physical, play a huge role in the health of a relationship.  Finding time to get rest or step back and take a breath of fresh air (ie doing something different for a few days) can help put a situation into clearer focus.  If communication is difficult because of built up bitterness or hurt or anger, finding a counselor that you can trust can be a big help in getting you started in a better direction.

For New Moms:  Postpartum depression can put an even darker cloud over a very sad or heart-breaking situation.  Postpartum depression can settle in anytime after birth, up to 6 months or more.  If there is any chance at all that your body is having a hard time adjusting to after-pregnancy hormonal levels, please don’t hesitate to contact your doctor or midwife and pursue this avenue.  This alone can give you a better outlook on your marriage and a situation regarding your child that is hard on-going.

Suggestions from Sherry for wives: Back when Tom and I were much younger and after our dear Tally had gone to heaven for a few years, we began to see that reaching out to find personal interests beyond our safe little box wasn’t so bad (or scary).  A new direction helped me to get my focus off my sorrow and gave us new things to talk about (besides our pain). 

So, if you like higher level schooling, working with people in a ministry setting like visiting the elderly, my suggestion is spell each other with babysitting or hire a sitter for a few hours.  Find an interest that you can financially afford and will keep you looking forward to doing it again.  How about your husband? Does he like to work out at the gym? Is there a Bible study course he would like to take? 

Confession:  I think that one of the hardest things for me to do, was to let go of my husband.  I kept an emotional tight grip on him because I was afraid he would get into an accident (more grief), find someone more lovely than I to care for. (I was slightly grumpy and concerned about chasing him away….?)  I was afraid he would leave me alone to care for the whole sad package by myself… the silly list went on. 

If any of you know Tom, he is definitely a stick-around type of guy.  Leaving me was the last thing on his mind.  And sorrowfully, the harder I held on, the more uncomfortable he became. 

After a difficult situation in our marriage surfaced, I needed to face things that needed to change in my heart. What did it take for me to relax and trust?  First I had to heal enough, with God’s help, to trust my husband’s love.  It took soul searching and daily prayer/ Bible study.  Tom worked overtime, to reassure me of his love.  I also had to choose to forgive.

  To me forgiving meant having faith that God has a bigger plan.  Letting go means I had to get my eyes off myself and my “special needs” (as in my own buried grief over the years, my own fear and pain of failure.)  And most importantly, forgiving means letting God be the Holy Spirit in my husband’s heart, instead of me.

           Next I had to work at becoming the godly woman that I was interested in being.  This included some new interests and a dedication to physically and emotionally being there for my husband.  This is what worked for me.

    As wives, I think that we might sometimes underestimate the influence of our love on our husbands.  In prayer, we can stay open to the needs of our man, if we will stay in tune with the Lord... EVERY DAY. 

Respect for our husband is also another way of respecting God.  Nothing tromps on Tom’s heart more than my belittling, sassy attitude.  Yup, using a degrading tone of voice or comments to motivate him got results, but not favorable ones. Our husbands are just as we view them as in our eyes.  If we are condemning, perhaps we will see a “whipped puppy” instead of the strong tower we wish him to be.  Treating our husbands just like the man and leader we want them to be is a huge step in our husbands’ growing into the man of God he was meant to be all along.

Tom’s suggestion for husbands:  Make sure you take the time to really listen with your whole heart to your wife.  So many times we feel side-tracked or tired from working and we just “sort of” pay attention.  It’s not that we mean to ignore, it’s just that we are already on overload and more piled on can be that “straw-that-broke-the camel’s-back” so to speak.

Choose to make time, just the two of you.  You initiate it, even if she expresses doubts.  Make sure the children are well cared for.  Sit down and really look her in the eyes with understanding. Share her deep-felt concerns.  Do more than nod.  Ask questions in a supportive way (not firing them one after the other) and even write down what she is saying so you can get a grip on the important issue.  (Don’t doodle as she talks!)

Be a supporter of her role as keeper of the home.  If you do make time for a special few days, don’t pressure for physical intimacy unless you are very sure she is well enough emotionally to share herself with you.  If your wife is grieving, having sex may just be that… “having sex” and nothing more.  That alone can be hurtful for her if just you are having a great time and she is mourning.

If you are not Mr. Sensitive, find ways that you can reach her heart, letting her know you care deeply about what she is feeling.  Have her write down her concerns and thoughts.  Be very open, never critical, as you read the list together.  Even if you feel a concern is overblown, or premature, or out of proportion for the true situation, be aware that these are very, very real in her mind and need to be addressed soberly. Each one of them.

Conclusion:

          1 Corinthians 13 -- the whole thing,  was our wedding theme.  It has stood the test of time the last 27 years through good times and awful times.

        As I am sure you probably understand by now, we have had our share of really difficult trials.  Being involved in a ministry situation has at times made us a target for Satan.  This has been

both a positive and difficult thing for us.  Sometimes we are driven to our knees in sorrow and remorse and straight to our Savior’s comforting arms.  When we have recovered from our lower moments, we can truly see the benefit of being in a difficult place, as our total dependence on Christ is mandatory to survival. This is right where He wants us.  Incredible. He then lifts us up and creates an even closer relationship with Him and with each other as husband and wife, after we walk through the dark valleys.

We are here to say that a really great marriage is very possible, if God is truly at the center.  We would not trade our past trials for anyone else’s or anything easier, because we would not want to trade the touching, Christ-like relationship we have now with each other, fashioned by God just for us, as a result of our fires.