I can see the mum now — totally worn out, hasn’t thought about dressing up and going out in months.
“My marriage hasn’t been “hot” since our honeymoon. Let alone since our child with a disability was born.”
Sure, and you’re not alone.
Marriage breakdown as parents of a child with a disability.
Do you know that statistics for marriage breakdown for parents of a child with a disability is reported to be 80%? What if it were possible for things to be another way? What if not fighting for a hot marriage is the surest way to find yourself on the path to relationship break down? Look around you…to the other parents who also have a child with a disability. Is it true in your observation? There are more single parents caring for children with a disability.
My first moment of shock in this area, my first moment of realization that I had to do something about it, was after making one of my first hospital friends. We had stayed together at the Ronald McDonald House. They have two children and their youngest had similar surgeries to our Matthew. They had been living interstate when they realized their child had major medical issues. They were transferred to Melbourne because the hospital they came from was not equipped to deal with the complexity of their son’s medical issues. Their child was in the hospital for about 12 months and they mostly lived at the Ronald McDonald House. We came and went every couple of weeks, but they were always there. We hung out often.
Shane and their eldest got along like a house on fire. It was fantastic.
Mum lived in the hospital mostly too. Dad came and went for work and the older child. Both sets of grandparents also took turns pitching in to cover the gaps. Then suddenly – at least for us – we had to ask, “Where is Dad?” With mum and the kids in hospital, he left. He and his parents cut ties. No contact. This happened just as their other child started to have health problems. You could see the toll it was taking on mum. She had to move with the children back interstate to her family. Even though the hospital wasn’t really the best option medically.
I was shaken. Shocked. Disbelief and anger swept over me. I chatted about this with a committee member from Syndromes Without A Name. He said, “Absolutely, it’s a massive issue.” When he started, the SWAN database had 400 names on it. He was the only male. Taking initiative, he started calling through the database. Clearly those dad’s needed support too, but where were they? It was a very delicate undertaking.
He recounted having to find the words to ask, “Where is the biological father, and would he mind if I reach out to him?”
We compared notes that almost as a rule, only parents of children with a disability who had a stable relationship attended parent dinners. Without the support at home, it was just too hard for them.
Luke and I knew we had to be proactive. One thing I had learned prior to this was:
“Find someone who has what you want and learn from them.”
What?… A marriage seminar?
Do those things even work? Well I can only tell you what I learned. So here are the highlights:
1. Make a commitment. Keep making it.
Making a commitment to attend something like this as a couple sends a message. It says:
“We are absolutely committed to a better marriage, to each other. It’s more important than the financial sacrifices and the time. Our relationship is more important than our children, even our child with a complex medical condition.”
Our Hot Marriage Secrets seminar was in Maui, Hawaii. It went for three days. That message — making an actual commitment — required sacrifice! That was the start of the journey, before we even went to the conference. Our marriage was already feeling the benefits. Already getting hotter.
2. Make your spouse a top priority.
We learned to recognize that being together, just the two of us, was a priority. After a week or so in the hospital, we noticed tempers fraying and the strain showing. We hadn’t spent time under the same roof in awhile. So we would call someone to do a pick-up and drop off. They would take charge of the other two children, while Luke and I sat together and had dinner. Sometimes we would get food and go back to Matthew’s room if things were really bad. But we’d let the nurses take care of him. Mostly we would go to a nearby restaurant and eat. Often we both felt emotionally drained and physically exhausted. Those dinners could be quiet, or we could have unresolved conflict we needed to take care of.
Priorities – you know that quote:
“The best thing you can do for your children is to love their mother.”
It goes both ways.
3. Time – away from the kids, have fun, eat, fight, have sex.
Just the two of you. It doesn’t matter. You have already made an effort. An effort to connect, an effort to make each other a priority. You’ve created a place where you know it’s worth it. The other person is totally on board and prepared to put in the work too.
4. Take care of yourself.
This investment in yourself is an investment into your relationships. If you take care of yourself emotionally and spiritually, you’re more capable to take care of them. If you take care of yourself physically, you’re doing the same, giving yourself stamina for the long nights. You’re giving yourself the strength for the awkward lifts and holding your child all night.
You’re also not “letting yourself go.” Remember when you always had to look your best for your spouse? Remember when you made the effort? The messages you sent with those little things then, are just as important now. Maybe even more so. I’ve also heard it called a “bait and switch”‘ when you make all this effort on yourself and caring for your boyfriend. Then you get married, get comfortable and suddenly you are no longer the person they married.
5. Sex is an excellent tool.
But should never be used as a weapon. Mum’s everywhere, especially parents of children with disabilities, underestimate the benefits of sex. We fall into a pattern of too tired, too busy, don’t “feel sexy,” he’s just not doing it for me…
Often because we haven’t done #1 –4.
You’re not even sleeping under the same roof? You’re in the hospital, he’s doing the running around with the kids, staying at home or elsewhere. Well, you’ll just have to get creative.
If you know me you’d know that typing this out for the world to see was not something that came naturally to me.I found however that secrecy and embarrassment in this area just gives us more excuses not to add sex to our list of priorities. No more.
Before I share a story with you that might make you blush, I’ll ask:
Do I really need to go through the benefits of sex?
If you think back to when you and your spouse where having it a lot – what was your relationship like then?
A hot marriage, even in the hospital…
OK here goes, not my story, so I’ll keep the details vague.
I met a brilliant vibrant woman at the hospital. She talks to everyone. We had children the same ages. She and her sick child had been transferred from another hospital. They lived in the country. A farming family. Hubby and an au pair looked after the children. I didn’t see much of him. After he visited she made a comment about getting some action in the bathroom…in her child’s room, on the ward, in the hospital.
I was astonished! How did this even cross their minds? (Before I did Hot Marriage Secrets.)
She proceeded to ask me what our solution was. How did we manage?
Spending weeks on and off with this amazing woman I came to have the highest respect for her marriage. They absolutely made each other a priority. When at home, she made the kids dinner early and put them to bed. Then the two of them would have dinner together after he got home from work. They talked on the phone often. Got babysitters and went out together, even if it was to the footy club event. They missed each other terribly when they were apart. She spoke so highly of him always.
I quickly realized I could learn a thing or two from her. So I did!
I’ll leave you with this…
Yes these are the same things I’d probably write down for a typical marriage. Being a parent of a child with a disability doesn’t make you exempt from those things, it makes them even more important.
What is the worst that could happen if you made a commitment to try? Will you be worse off?
For those who are rocking it, please share your tips, I’m sure many of us would love to hear them.