This is a continuation of this topic. To read my first post, click here.
I’ve been doing a lot of research on the topic of Christian marriage and special needs parents over the last several years, and it’s been disappointing to find that there really isn’t much written about it. There are books on marriage (so, so many), and there are books on parenting a child with special needs, but rarely do the two subjects intersect – and even rarer does faith come into it. As I’ve started writing about it, I’ve discovered why. This subject is hard to write about. I’m not a psychologist or a doctor, and I’ve been married for less than 12 years. The only thing that qualifies me to write about this subject is my background in theology, my experience, and my relentless research.
I’m the mother of a six-year-old son with Down syndrome who’s had major medical complications, and it’s impacted my marriage. That isn’t something anyone really wants to admit. We want the world to see us thriving, despite our circumstances, never having done anything but clung to one another in deeper love and affection than ever before.
It’s safe to say that my husband and I have made it through the worst of the storm and are thriving today, but we made it through in the equivalent of a leaky fishing boat in the middle of the stormy sea. We made it to dry land and built a safe and sturdy house on The Rock of Jesus Christ, but we did it without guidance from anyone who’d been through it before. NONE. So, if we have anything to offer from our experience, we’re willing to share it.
We used the tools we had at our disposal – our pastor; two Christian counselors with experience in marriage, trauma, and anger management; our parents and close friends; and so much prayer. They all had a little piece of the puzzle, but what if we’d had an actual guide who’d been through it? The problem is, a guide can only share their own experience, and this subject is multi-faceted. I’m wading into deep waters with caution, hopeful that you’ll give me grace for anything that I offer that doesn’t work for you.
In the disability community, we have forums where we can share our experiences and receive feedback from other parents. I’ve been in several of these groups since our son was born. I’ve often heard from other mothers of children with disabilities that they’re extremely frustrated. Here I share several of the issues with my experience and the bottom line. While every situation is unique and there are no one-size-fits-all solutions, I’ve come across a few ideas that might be helpful in these situations.
The First Issue: Husbands who don’t help with the child. Mom is exhausted and burned out from 24/7 care, but either her husband won’t or can’t help. (I’m sure there are wives who won’t help, but my experience hasn’t led me to hear about them.)
The Suggestions: The first suggestion is to accept that your husband isn’t going to do things the way you do them. He may, in fact, do them completely differently. The question is, is the child okay? Is the child being injured or abused? I know that’s hard to hear. We want the best for our children, but we have to weigh the cost. Exhaustion can cause a person to mishandle medication, drop a child, or make un-sound decisions. It’s likely better to leave your child in the hands of someone who doesn’t do things as well as you than pressing through to the point of despair or critical mistakes. If your husband feels constantly criticized and incapable, he may stop trying to help.
My experience: When we were tube-feeding my son, my husband didn’t do things my way. My way was the most efficient and nurturing, but his way did work. Our son got fed. Maybe late, maybe too much or not enough, but fed. If I hovered and pointed out everything I didn’t like, he’d get frustrated and walk away. I ended up typing up step-by-step instructions and a schedule, laminating it, and posting it beside the high chair. My husband didn’t follow my directions, but I felt better that they were there if he wanted them.
I had to change my perspective. Perfection wasn’t the standard any longer; survival was. Even if he missed a feeding entirely, our son wouldn’t starve. It’d take missing many meals over an extended period of time to really impact his health. If he didn’t watch the oxygen tube constantly and it got pulled out, low oxygen takes days to have a lasting effect.
I had to be able to leave the house sometimes, even if it was just to get groceries. I had to be able to take care of my own basic needs and the needs of our other children.
The bottom line: It’s more important to get a break than to have everything done perfectly all the time. Not that I did everything perfectly by any means, but my need for control was satisfied when I was in charge. However, I was a much better mother (and wife) when my own basic needs were met.
The Second Issue: a husband who works constantly, trying to provide for his family. When he gets home, he’s exhausted, and he doesn’t have the energy to care for the child.
The Suggestions: In these cases, would it be better for both parents to work? It gives both parents a break from the pressures at home, provides an income, and allows both parents to have the energy to care for their child. Even if the husband’s earning power is greater than the wife’s, it might be worth him working less hours and getting less money to keep the family together. Then both parents can be invested in their child’s health and well-being.
Even if it seems strange to call going to work “a break”, it provides social interaction with peers, a chance to accomplish something of value outside the home, and respite from the constant need to be alert. That constant need to be alert brings a lot of unseen pressure with it. Also, just being forced to get cleaned up and out of the house regularly can help with depression.
Another suggestion is to let your community know you need help. Ask plainly for what you need. Yes, it’s a blow to your pride. I understand. But when others reach out to you for help, do you think badly of them? No. You do what you can to help and you’re glad to do it. Don’t rob your community of the blessing of helping you. You may be very surprised at who jumps in to help.
My Experience: My husband is a farmer. There are seasons where he must work around the clock to provide for our family. He’s a very energetic person, but there have been times when he literally has no time to help because he has to be out on the tractor. If he isn’t out there, we won’t have an income at all. I’ve had to swallow my pride and ask for help so often that it doesn’t feel like such a difficult thing any longer. I’ve also worked when I’m able, flexible jobs like substitute teaching. I don’t make anywhere near the money he can make, but it really helps me to get out of the house and have adult interaction. I’ve asked local family, our church family, and our neighbors to help us. The people who’ve stepped up to fill in the gaps for us have amazed me. In our case, it’s often been people we never would’ve thought might help us, while the ones we might expect to offer haven’t. I’m very thankful that my husband’s parents live close and have given sacrificially of their time and energy to help raise our children.
The Bottom Line: Think outside the box to try to find a solution to bring relief to overtired parents. Consider alternatives to one parent working excessive hours while the other parent provides all the care. Ask for help.
The Last Issue: There’s no excuse, but the husband just isn’t going to help, period.
The Suggestion: Please consider getting respite care. There are reputable agencies who provide care for children in these exact situations on a regular basis. They understand the pressure it places on a family, and they want to help. It’s hard to trust a stranger to care for your child, but today cameras can easily be placed throughout the home for safety. (We have inexpensive cameras from Amazon because we need them to keep our son from eloping, but they certainly provide an incentive for caregivers to handle him well. I always point them out and explain what they’re for.)
My Experience: I know a family where the husband offers absolutely zero help with the child but also refuses to allow anyone but his wife to care for the child. This demand places a ridiculous amount of pressure on the mother, the marriage, and the entire home life. While I’d never advise disrespecting your husband, I do advise bringing in a neutral voice that your husband respects. Let someone else hear what’s going on and let that person speak to him. Pray for good sense to prevail over fear. A burned-out caregiver eventually makes mistakes, and a wife who’s exhausted and depressed doesn’t bode well for the future of a marriage.
The Bottom Line: Respite care is essential. Reach out to your local Medicaid office if you don’t know where to start. They can typically point you in the right direction. In our area, there’s an agency that provides respite care and funds to help families thrive. If that means they need a swing set so the disabled child’s siblings can get outside because it’s too hard to go to the park, they get a swing set. Don’t be afraid to ask for help.
In closing, I repeat: a burned-out and exhausted care giver is going to make a mistake eventually, which can put the child at great risk. It also puts the marriage at great risk for failure because there’s no ability to nurture it. Resentment can build on both sides. Rather than seeking perfection in care for the child, allow your perspective to zoom out and see the whole picture. Look ahead a few years. Ask yourself what changes can be made today to protect tomorrow, and ask yourself how to protect the entire family.
Although the finished outcome may seem simple and straight-forward, this article has been difficult and draining to write. I hope it’s helpful to someone out there. I pray that if you’re in that place of exhaustion and desperation, you’re able to find relief quickly. I pray you’ll have the strength you need to make it through.
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