5 tips for making it to the 5 year mark.

the other day I wrote about how Ben and I were sat down by the nurse and told that most couples in our shoes won’t make it to five years without divorcing. the stress of having a child with special needs brings the majority of couples to a breaking point from which there is no return. Why this is I can only speculate. Based on the history of what we have been through I can assume it entails some of the following:

  • Your reactions to the news of having a child with special needs can be diametrically opposed – one can be ready to fight for the life of the child while the other wants to crumple in fear and desperation. And then you will both flip-flop.
  • Even if insurance is in place, the costs of having a child who needs specialized formula, specialized medical equipment, therapy that is often not covered by insurance, the miles on a car, the gas to make it to multiple appointments, likely at a medical center not anywhere near where you live, etc etc etc – all of this adds up to a huge financial burden. Financial stresses are a part of most marriages – in a special needs family they can be a boulder literally breaking the backs of the family.
  • Once the initial reactions are over, and you are able to find some kind of mutual understanding with regard to the child’s diagnosis, there can still be some differing opinions on routine (or not so routine) medical care and this can cause extra friction in an already stressful situation.
  • Pure lack of sleep. If you’ve ever been awake for more than 38 straight hours – you know exactly what I mean. It makes you do/say/feel crazy things.
  • Defining “roles” appropriately. Maybe you used to be the world’s best cook or the best housekeeper with a ready stash of toothbrushes for scrubbing the tile grout.  All of that goes right out the window when you are the main caretaker of a special needs child and your mind becomes consumed with keeping them alive, managing their care, and overseeing the massive influx of medical supplies into your previously organized home. This leaves the cooking and housekeeping to fall on other people’s shoulders, and if it’s a reluctant husband, things can go from annoying to really bad very quickly.

IMG_0014 Now I am not claiming to have all of the answers by any stretch of the imagination. BUT – Ben and I have been through some doozies these past 5 years, and I think it would be wasteful to just keep these things to myself. I don’t know if they will actually help anyone else out there in similar shoes or not, but here they go.

1. Talk.  Talk to each other, talk WITH each other, talk it out. This may not come easy. It did not come quickly for us. Our initial reaction was definitely to ignore the elephant in the room and try to shove it under the rug. We both knew something was “not right” with Kendall, but neither wanted to really talk about it for a long time. And then we started having to trek up to Milwaukee for appointments with appalling regularity, and on those drives we started finally talking. In our relationship, I tend to be the talker and Ben tends to be the….not-talker. I would say listener but sometimes i’m not even sure he’s doing that! He just knows I process by talking, and he processes by just being still with his thoughts. But once we came to that understanding, that saying things out loud was not going to make HER any worse or better, but it would help US know we were on the same page – it really started helping us both out immensely. Talking gets you on the same page, eventually. And being on the same page is OH so important.

2. Learn to ask for and accept help. This was really tough for both of us for a long time. Even still, five years later, there are people who know us from around town, just acquaintances, or old high school friends, or any number of random peripheral relationships – and they have NO idea what we deal with or go through on a day to day basis with Kendall, her care, and raising our family. We tried VERY hard for the first few years to act like everything was normal. To try to literally be in four different places at once. To never be a burden to anyone around us by having them do OUR job – getting our kids to school or making their lunches or paying our bills.  People from our church are amazing though, and continued to support us in spite of us not being able to actually ASK for help, and eventually this helped break those walls down that we had built up around us. And oh, the love that came flooding in from so many different directions. I don’t know why we played the stoic card for so long – I think it was our desperate attempt to not admit that our lives were “crazy” or “different” or that things weren’t really “that bad”. And I don’t even mean from a financial standpoint – I mean, I think we both wanted to really hope that one day Kendall would just “be better”, and this would all be one huge false alarm. Admitting that we needed help was like admitting to ourselves that this was really a long-haul type of thing. So I know it isn’t easy. But let people around you help. MANY people struggle financially – and asking for help doesn’t always have to mean a handout.  I am blessed with more than a few friends who will help make sandwiches for the girls’ lunches, grab all my towels that need laundered and return them to me folded and ready to put away, and people who help with the massive amount of taxi-driving my children seem to need throughout the week! But if I had not been able to admit that I am not Wonder Woman, some of these people would never know how to be the Hands and Feet of service that is so desperately important to our family, and that keeps us going even on the most crazy of weeks.

3. Learn to Let Go. Let go of expectations for the house, for next year, for what you think you want your spouse to be. Just drop it all. I promise that what you drop will be replaced with something FAR greater, something beyond what your original expectations were. It will come in a different way and on a much different timeline than you ever hoped for – but it will come. Let go of the notion that your house will look like it belongs in Better Homes and Garden – you will gain some great memories of belly laughing with your kids over the messes you clean up together.  Let go of the expectation of your spouse that things are exactly like they were before your child was diagnosed. Because that person is gone, and in their place is someone with so much more potential for amazement – but if you lock them into your previous expectations you will never get to see all the amazing NEW things they will do. You will still have some expectations, and they will still hurt when they are unmet. But you will learn to let go. Let that process happen.

4. NEVER underestimate the power of a few good hours of uninterrupted sleep.  I know – for some of you, sleep is probably a distant thing of the past. You wouldn’t know a good sleep if it hit you upside the head. Circumstances rarely allow for these “naps” that you get harped on to take by well meaning mothers, strangers, doctors. And even if you do find yourself with an hour or so in which you could lay down and shut your eyes for a few minutes, your mind is probably already going 50 miles a minute thinking about all the OTHER stuff you should be doing in that time.  (Go back and read number 3 a few more times – let go of those self-imposed lists!) In our situation, Ben travels all week almost every week. This means that if there are alarms going off every night, it’s up to me to go in and handle them, troubleshoot them, fix them. This leads to some definite sleep reduction. But – I’m not a napper by nature. I literally have a hard time falling asleep in the middle of the day. NOw – I can sleep in til noon if the moons ever aligned right – but no, cannot nap usually. However, Ben can nap anytime there isn’t a scurry of activity currently calling his name. While this used to cause some resentment, I have realized that we BOTH need to sleep whenever and however and wherever we can.  If you CAN nap – then please do! The messes will still be there, the laundry will eventually get done, the supplies will eventually get put away. If your spouse is the one who needs the sleep, help facilitate that for them. Maybe you can’t afford a fancy date or flowers – I can guarantee that MOST women will find it even more romantic to be wooed with a quiet room, a cuddly blanket, and a promise to keep the kids out of her hair for a solid hour so she can sleep! Sleep deprivation leads to crazy people. Just do it. Take a nap. And don’t resent your spouse if he/she can fall asleep easier than you – sleep is good for everybody!

5. Be willing to let go of predetermined “roles” in your relationship. AND – be willing to take on roles that may not be how you always thought it would be.  This may not come overnight, and it may not even be an easy transition even if it is something you’ve sat and talked about together. Most of the time, these roles will morph and blend and change over the months and years. You may find that where you always thought YOU were the one to cook the meals every night, your husband is actually a great cook and this frees you up to prepare medications/order supplies/ do medical cares for your child.  It isn’t easy – and we are STILL learning this to this day – but sometimes we hold on to these ideas that “this is MY job and that is YOUR job”, and realistically, in a morphed relationship like you have when there is a child with special needs – there’s just “JOBS THAT HAVE TO BE DONE” and “PEOPLE WHO ARE CAPABLE OF DOING THEM”. Maybe your family works best with a list and assigned names, or maybe your family works better just kind of taking each day as it comes. Either way – let it happen. Determine what the day’s priorities are – survival, eating, wearing non-smelly clothes, getting to all important places, and everyone happy in their own beds at or near bedtime – and then do what it takes to ensure THOSE things happen.  Don’t nag, don’t get tied up in who is supposed to be doing what – just get it done.

 

I don’t know – I don’t pretend to have all the answers. Maybe these things will work in your family and maybe they won’t. But I hope that maybe some part of our story will be a part of yours. It has not been easy – not the last five years and not the 12 years before that either. Marriage rarely is easy. You HAVE to work at it, even and especially on the days you don’t feel like it.  We are not perfect, but we do love each other.  If any part of what we’ve gone through can help someone else, then I consider it all worth it. We are still learning, growing, changing. I hope we never stop. I hope we always try to improve.

And also – Ben is a great cook.

I’m so grateful to him and glad for his stubbornness to stick with it these past few years.

So as always, we keep on keepin on.

Please feel free to leave a comment if ANY part of this resonated with you – special needs family or not. I’d love to know your thoughts!

 

Thanks for being here!

Terra.

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Comments

  1. I think you’ve got it right…..although it is sometimes hard to let go of expectations. The main thing is that you keep your family together….whatever it takes. Don’t underestimate the power of sleep though. It can take away the crankiness and put you back in perspective so you can cope……sleep whenever you can.

    • Terra, thank you so much for this post! my husband and I are struggling right now… our 2 year old has Mito with over 20 hospitalizations and 2 older sisters 5/7, it is really taking a toll on our relationship. As I type this, I have been awake with my son for 2 hrs, I spent the day with him in the ER ( I know he will be admitted, just a matter of time:) and hubby is sound asleep….uggh
      Everything you said in this post I could relate to and you have given me hope that we will also make it to the 5 year
      anniversary:)
      Thank you so much, you are a true inspiration!

  2. I can relate to your family dynamic a lot. I’m not the parent but the “child”. I’m 21 now and I really agree with what you said. I would say the number one thing to remember as a parent is if you are not in an ok place mentally then your child isn’t going to be either. As a child I felt when my mother was stressed. Over the years I could see her putting extra stess on herself over what the house “should look like”. She would be washing clothes and putting away new shipments when she hadn’t slept in 30 hours. I love that you said THE MESS WILL STILL BE THERE WHEN YOU WAKE UP. Caretakers need to be well rested and happy to have happy children. The other most important thing to remember (which I still haven’t mastered) is letting go of what you thought it would be. I grew up with mito and very sick, but my mom still told my I could go to college and become anything I wanted. I’m 21 and still haven’t been able to move out and attened college. I am trying to train myself to accept that and be happy with this life, but IT IS HARD WORK!