Rare Love and Marriage
If you, too, have a rare child (or two) I don’t need to tell you that your whole life changes on your diagnosis day. Something like a rare diagnosis will have a profound effect on the trajectory of your life, and every aspect of it.
As you might imagine, the stress and chaos of a diagnosis and getting a handle on a care team is enough to strain even the healthiest of marriages. There are plenty of times I would remind myself that while I may have been frustrated with my husband’s actions or responses to my frustration, he surely felt the same. We are vastly different people with different coping skills.
So how have we made it work? How have we survived not one, but TWO kids’ rare diagnoses, surgeries, tests, scans, appointments, therapies, medical bills upwards of 5 digits, stalled referrals, med changes, 504 plans, and IEP meetings? It hasn’t been easy, but my marriage is actually the easiest part of it for me. My husband is my North Star. When I am overwhelmed and the enormity of this life crashes around me, he guides me back to what matters. He guides me back to hope, faith, and love.
I found a few little strategies that really helped me to keep things in perspective and keep the frustration down in my marriage. Obviously, different methods work for different marriages but hopefully, some of these will help you in your own marriage, especially if you are facing the stress of a rare diagnosis and kids in your home.
When you have rare children in your home date night may seem a bit like a pipe dream. And in the traditional sense, it might be. It’s often not as easy as calling the college kid down the street to sit with your toddler and go off to dinner and a movie. Now is the time for that creativity we all know you count on to get through life with your rare kiddo. It might be time to check into that respite care we all keep hearing about. Trust me, there is no better way to spend a couple of kid-free hours than investing in your marriage.
No respite available to you? That’s OK! We do what we can with what we have. Maybe you clear out two hours after bed, settle on the couch with a giant bowl of popcorn, and a glass of wine, and put on a movie without cartoons singing at you for a change. Maybe you or your partner can schedule a long lunch while your rare kid is at school and you can have a lunch date at home once a month or so. No phones, no screens, no hard pants. Just you and your partner catching up and checking in. The point is that us rare parents are already pretty good at being creative and thinking outside the box. It’s about time we use that for the benefit of our marriage.
This one is super awkward at first, I know. But it gets easier the more you practice. While putting on your hand cream and plugging in your phone, just ask your partner how their day went and how they’re feeling about that big presentation at work tomorrow. It can be hard to talk about anything but your kids, especially when they require so much of us. Make an effort and you should get there more days than not.
The goal is not to ignore your kids, but use this time to remind your partner that you see them as more than the rare co-parent. They are still your partner. Use this time to reconnect as a couple, not as parents. Rare parents have to make a bit more of an effort than many other parents. Time is your investment here and you and your marriage are worth the investment!
Ask how your partner feels
You probably won’t be surprised to hear that spouses often process things like medical trauma and stress differently. Make no mistake, you are dealing with medical trauma and medical stress when your child(ren) receives a rare diagnosis.
I talk about it. A lot. In a very logical and methodical way, I talk. My motto might be something along the lines of “why say in 5 words what you can say in 50” and it is how I process things. I talk and I write. So here I am.
My husband tends to ignore things. He knows that he can’t fix the problem so he tries to push it out of his mind so it doesn’t drive him absolutely mad. He listens when I talk about the girls and their diagnoses and he absolutely participates in conversations involving treatment, plans, and/or any of our feelings surrounding it all. But when it comes to him and his feelings….he ignores. He buries his head in the sand.
Recognizing that we process and handle things differently was a huge help. It led me to ask him periodically how he is handling everything. Neither of us is alone in the feelings of frustration and grief we hold and it honestly does help to hear it out loud.
Yes, your partner SHOULD take the afternoon off to help you get your kids to therapy from time to time. They SHOULD be involved enough to help keep track of med doses and seizure activity. They SHOULD be able to handle the occasional phone call to the insurance to fight a denied claim. As your partner, they SHOULD do all of these things and more.
None of that means that you shouldn’t let them know that you appreciate the relief. They deserve to know that their efforts are seen and appreciated. There is value in you getting a break from one trip to the pharmacy or one call to fight about why the insurance suddenly won’t cover the only seizure med that seems to be helping at all.
I’m out on a limb here when I say most people reading this are moms. That should mean you know that most men tend to be fixers in a different way than women are. Haven’t you told your husband about a problem with a co-worker only to be med with several “answers” to the problem you didn’t really need to be solved? You just wanted to vent.
Now you can see how it might be more difficult for a father and husband to not be able to fix their child. I know it’s excruciating for me and imagine that in that regard it is at least as difficult for him to process. My husband has only ever wanted to protect our family and keep us safe and healthy. Unfortunately, he can’t fix them or their disease.
Acknowledge your feelings and talk about them
For the amount of talking I do, you would think I do nothing but run around crying and venting all the time. Sure, I talk about the girls’ diagnoses and the impact it has had on our home and our family. But I don’t tend to cry very much, especially in front of people.
When my girls first got sick I would get up at about 3 am and sneak downstairs to cry. Alone. Now, I’m not suggesting you wake your husband up in the middle of the night to cry, but don’t assume they can read your mind. Don’t assume your spouse knows how you feel. If you’re struggling, tell them! They probably are, too!
These things all take practice and effort. None of them are easy to implement and will feel a bit unnatural and awkward at first. But let’s be honest, isn’t that the way we live as parents of kids with rare diseases?
Really good advice for any marriage but especially those parents of rare disease kids!
Love both of you for being such a strong team! ❤️