Marriage is probably hard enough all by itself. (I wouldn't know because Rick and I had our first baby a few days before our first anniversary, so we practically skipped that whole "getting used to one another" thing.) Then children are added to the family, and no matter how sweet, well-behaved, or desired the child - pressure comes with parenthood. The pressure can increase significantly when a child whose needs are significantly more enters our lives. Even in Christian marriage, becoming special needs parents impacts everyone.
If a couple has the benefit of a joint faith in Jesus Christ, they have a solid rock on which to build their relationship. Hopefully, they have a church family and supportive pastors to help them through the tough times. But all church leaders aren't equipped to understand or help couples as they work through the unique struggles that can come when they learn their lives will now be spent caring for a child with special needs or medical complexity. There are very few resources currently available to support the marriages of Christian parents of children with special needs. (I know the term "special needs" can be controversial, but I embrace it with the understanding that the needs my son with Down syndrome has are significantly greater than those of my typical children. Every child is special, but his needs are more, and I don't think there's any shame in stating that plainly.)
I've been researching how to help all of us out. I'm no expert. I'm desperately in need of help too! As I learn and grow, trying things out on my own marriage and talking to friends, I will share what works for us and what doesn't.
As Christians, we can try to shine things up, look like we have it all together to the outside world. We want to represent Christ well, and we've believed the lie that in order to do that, we should always appear strong, at peace, and in control. But if we look at the characters in the Bible, we'll find the exact opposite to be true. The Bible doesn't shy away from sharing nitty gritty, difficult situations, refusing to tie them into a neat bow. The Bible is full of raw, difficult, challenging circumstances, and those who proclaim to love God with all their hearts are often the ones who mess up the worst. With that in mind, let's wade into these murky waters.
When our third child was born in 2017, we were shocked to face immediate medical crisis and a diagnosis of Down syndrome. I won't go through it all here because I've written about it extensively, but we weren't prepared for nearly losing him and facing a lifetime of unknown difficulty. I went through a storm of emotions. I'm comfortable expressing my feelings, and there were lots of tears. At times I felt completely overwhelmed and physically shut down. The strain caused me to sometimes neglect paying our bills and I made an error on our taxes that cost us dearly. I rapidly gained and lost weight. I was so focused on keeping our baby alive that little else caught my attention. During that time, Rick was strong for me, gracious with my failures, rarely sharing his own concerns. He took over many of the household and parenting duties. As soon as our son's medical fragility settled down a little, it became apparent that I needed counseling. A friend helped me get into someone with a true gift for healing.
Then, both our older kids let us know the prolonged separation and fear during repeated ICU hospitalizations had impacted them too. Rick was calm and reassuring while I worried about how to help them. I got advice from my counselor, and we went with our instincts to comfort and protect them. For a while, we took one of them with us everywhere we went. The other one clung unduly to friendships, needing the connection missed at home. They've gotten a lot better with time and nurture. As the baby's health crisis calmed a bit more, they calmed. I breathed a huge sigh of relief.
Then I noticed my husband showing signs of the stress he'd been under. He faltered from the strong and steady man I knew him to be, and I was worried and confused. I didn't immediately understand what was going on, but I did realize I had to find a way to help him. The typically stoic fixer, he didn't like admitting anything was wrong. He was used to being the one who could be counted on and trusted in any situation. I cried out in prayer, begging God to give us wisdom.
Although it was terribly embarrassing, we spoke to our pastor. He was gracious and helped us get started with a trustworthy counselor. Through this trial, we learned something important. People tend to take turns reacting to stress. Since a family can hardly handle everyone freaking out at once, members often unconsciously wait until they know someone else is okay. It may be hard to recognize what's happening when the person who's been strong for so long feels safe to show the pain they're feeling. After repressing those emotions for so long, they have to find a way out.
As medical bills pile up, sleep-deprivation accumulates, and pressures from the other children's needs kick up, men can feel overwhelming pressure. Men often feel it's their job to fix the problems in their families, and when something like a lifelong disability or chronic illness comes up, they can feel helpless. If you add in any other type of stressor, like a job loss or the death of a parent, the pressure can be too much. Then, if they react negatively, they can add shame to their list of feelings.
It's as important for a wife to hold on during this season as it is for a husband to hold on as a wife goes through post-partum changes. Their overall character shouldn't be judged during times of extreme stress, sleep-deprivation, or undue pressure.
We learned that this situation isn't uncommon, and if both partners are willing to work on themselves and their marriage, nearly anything can be overcome. My husband and I are both deeply committed to our marriage and our family. We made it through that difficult time and learned a lot about ourselves and each other in the process. We have a stronger marriage today because of it.
A marriage under extreme stress needs partners with extreme compassion for one another. Here are some practical tips:
Find a way to step back from the intensity of the moment to see the bigger picture.
If your partner is behaving in a way that doesn't line up with who you know them to be, dig deeper to find out what's going on, rather than assuming that they've been hiding the worst parts of themselves all along.
Follow I Corinthians 13 and assume the best about one another. You can believe the best about your partner. You have the best possible tool at your disposal - prayer.
Love never gives up.
Love cares more for others than for self.
Love doesn’t want what it doesn’t have.
Love doesn’t strut,
Doesn’t have a swelled head,
Doesn’t force itself on others,
Isn’t always “me first,”
Doesn’t fly off the handle,
Doesn’t keep score of the sins of others,
Doesn’t revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.
(I Corinthians 13:4-7)
Prayer, along with practical steps toward healing and wholeness, can change the course of your life and the lives of your children. There's no shame in asking for help. There's great bravery in speaking with a counselor.
Your first thoughts may be - "We can't afford it. We don't have time or childcare. We can never leave our child alone." I challenge you to look into how much it costs to get a divorce, especially when children and custody battles are involved. Think about the financial fallout of paying for two lawyers, two homes, two sets of clothing and toys and beds for your children, the time involved in transporting them to and from the other parent's house, and the counseling they will need as they deal with the breakup of their family. Think about what it will take to care for your child with special needs without the help of your spouse. (If you spouse is not helpful, stay tuned next week for a discussion about that.)
You will be parenting with your spouse for the rest of your life, whether you're married or not. Isn't it better to have that person on your side as a helper, rather than an antagonist? Divorce tends to bring out the absolute worst in people, devastating children and everyone else in it's wake - your parents, siblings, friends, and community.
Respite care for your child is often available if you ask. Trained nurses, or regular people who are willing to learn how to operate medical equipment, can be found through your local Jobs and Family Services (or the agency that runs your local Medicaid - every state has their own version) or local charitable organizations. In Ohio, you can contact your local Family and Children First Council.
Your church may help you pay for counseling. Check with a local Christian counseling center to see if they have an income-based sliding fee scale. Maybe you can go over your lunch break or during your child's nap time. If you can't go together, find times when you can each go separately. Online counseling centers may offer after-hours time slots. Think outside the box for the sake of your family. It is an investment, and you won't regret making it. If the first counselor you go to isn't a good fit, try again. Even if your spouse isn't willing to go and you're sure they're the problem, go by yourself. You'll at least find a safe place to vent your frustrations, and someone trained in healing relationships may have fresh ideas to reach your spouse.
I'd be remiss not to mention that if there's true, unrepentant evil involved, you should seek help and keep yourself and your children physically, emotionally, and spiritually safe. Everything I've written today is with the understanding that both spouses are committed Christians. If you find the situation irreparable, there's no judgement here; only compassion. If you're both Christians, but you feel unsafe at the moment, physically separate for a time to seek safety and healing. Ask for help.
Radically seek healing for your family. If your spouse isn't willing to work on your marriage, pray and pray some more. God moves mountains when we pray. Fast, ask others to pray with you, and then pray some more. I know it's hard, but plant your feet in stubborn refusal to give in and find a way. Your spouse will eventually appreciate how hard you fought to save your marriage.
I know you're exhausted from everything you're doing for your child, but this is like putting on your oxygen mask first. Stand and fight.
If you're reading this post and need someone to talk to right away, feel free to email me at kimberly@kimberlywyse.com. I may be able to troubleshoot some ideas for your situation, and if not, at least I can offer a listening ear and prayer.
