Someone once told me that traumatic events have the power to either bring a couple closer together or to tear them apart. I don’t know if I’d call getting a special needs diagnosis is a traumatic event, but it definitely is jarring and life altering. I can absolutely see how the confusion, frustration, and feelings of helplessness can add strife to a marriage – we take our anger out on those who love us most, right?
Fortunately, I feel (very luckily) that the bond between my husband and I is stronger than it has ever been. We are no experts – but here are things we feel have helped us keep it together.
Respect each other’s coping mechanisms
When we first knew something was wrong, but didn’t know what, we dealt with it in different ways. I cried. A LOT. And he let me – he held me, and didn’t try to tell me it was probably nothing when I knew it was. He researched. He read studies of other trisomy 12p cases (what he could find, anyway), and spent time on an online parents group on Facebook. My husband wanted to know what to prepare for, and I felt the opposite – I didn’t want to know, and I didn’t want to let any previous cases set my expectations for my daughter. We respected the way each other dealt, and it’s still working a year and a half later.
Be the strong one (sometimes)
Getting a diagnosis like this is scary. Not scary – terrifying. So many unanswered questions…what kind of life will she lead? How am I going to deal with this? How will people treat her/us? What will happen when I’m not there to protect her? How did this happen to our family?? Freak-outs will ensue, which is expected and okay – but you can’t be the one to freak-out all the time. Your significant other will need to be scared as well, and when they are, you have to be strong for them. Turn to them, and then allow them to turn to you.
Share the load
Being a parent is a lot of work. Being a parent to a child who needs multiple therapies and extra daily physical and cognitive exercises is a lot more work. Once you’re ready to dry your eyes a bit, figure out how you’re going to approach this. There will be many exercises to do and appointments to keep…are you splitting duties evenly? Will one do physical therapy and the other occupational? Maybe one of you will be the breadwinner, while the other will focus on what needs to be done with your children? If you do decide one’s career will be more important than the other’s, make sure the one taking a step back is okay with this choice, not just saying they are (and if you are that one, be honest). And then try and be flexible when unexpected meetings, etc. come up.
Feeling like you’re fighting the exercise battle alone is a helpless feeling. My husband and I keep a running list of our current goals – if he and our daughter work on something before I get home from work in the afternoon, and I don’t see it or he forgets to tell me about it, I can still glance at the list later and feel good about what she’s done that day. This is also helpful during those slow periods when it doesn’t feel like she’s making any vast progress – a look at the list shows all the work the three of us have done that week.
Current version of our girl’s workout sheet
Know when your spouse is approaching the danger zone
There are times when the stress can be overwhelming, so it is helpful to know when your partner needs a break. Example: my husband is normally sarcastic in a very happy, funny way – when the sarcasm gets flat and just tinged with anger, I know it’s time to send him to the basement with a beer to relax for a few minutes. This normally happens during meal time for us, if our sweet yet stubborn girl decides she doesn’t want to eat. The stress ends sooner when we can recognize that it’s time for one of us to take a break.
Maybe I’ll eat, maybe I won’t!
Ask for help
Knowing the signs of the danger zone is great, but no one is a mind reader. My instinct when I’m feeling like my husband isn’t helping enough is to get snippy and really short with him until he either kicks it into gear or asks me what’s wrong. If I just skip that stage and ask him to do the dishes or work on stairs with our babe, he never says no, and then I don’t hurt or annoy him. I also (try) to remember that just because I think something needs to be done right now, it doesn’t mean he does. And that when he’s busy, a simple “how can I help” lets him know I’m there. Try to relieve some of the stress of life. Do the things the other one dislikes – he takes care of our bills/taxes/paperwork type duties, and I do the laundry and order the pizza (yep, my husband hates ordering pizza).
Encourage each other to take time alone
I like to go for drinks with my girls. My husband is on a bowling team. And on the nights he’s bowling, I miss him. If he was never gone, I might forget that.
This doesn’t have to be difficult, or require time out of the house or money spent. On Saturday mornings I get to sleep in while my husband gets up with the kiddo, and I cannot tell you how much I look forward to it. I’m still up by 8 or 9, but that extra hour to hour and a half of blissful relaxation can do wonders for my mood for the rest of the day.
You were each other’s boyfriend/girlfriend, then you were husband/wife, and now you’re husband/wife + parent + parent of a child that needs extra support. It’s a lot. Get back to you sometimes, and help your partner do the same.
Make time for each other
Chances are life was a lot less stressful when you fell in love – relax and bring those feelings back every now and then. LISTEN when the other tells you about their day, or about their passions, even if it is football. Take a few quiet minutes together at the end of the day. Listen to some of your old favorite songs and talk. Reminisce over the time the hula dancer made your husband dance with her on your honeymoon (if your husband enjoys dancing as much as mine does – and by that I mean not at all – this is a very funny memory). Look nice for each other and go out to dinner. If you don’t have a stellar babysitter next-door like I do, here is one of our favorite at-home date nights (SHAMELESS!) for after the kiddo goes to sleep: http://tinyurl.com/nh85scf
Be gracious and honest in your communication
Saying please and thank you is so easy. Yes, he was supposed to take out the trash, he doesn’t deserve a ticker tape parade for actually doing so…but hey, you didn’t have to do it, so worth a thank-you in my mind. And don’t yell – even if you’re just asking him to DVR The Bachelor, get off your ass and walk to where you can speak in a normal voice – or wait till you’re in close proximity. Yelling, even if it isn’t mean yelling, adds stress. Keep the lines of communication open, even if that communication is “I need a break, I don’t want to talk about it right now.” A fight can be like a colicky baby – sometimes you need to put it down and go in the other room for a minute. Then you can return and take care of it with a clear(er) head.
This is a life changer, not a life ruiner. You will work hard, and awesome things will happen. When they do, celebrate together. The day our daughter finally decided to drink from a sippy cup, there weren’t happier parents – had I not be pregnant, I guarantee a bottle of wine would have been opened that night. We are so happy with the progress our daughter has made, and while she gets the bulk of the credit, it’s okay for us to realize that we deserve some too. Thank each other for working hard. Let your spouse know you appreciate them.
So much love ❤