Dear Jen, all is NOT lost.
My husband has a much lower injury, but due to constant pain and other health issues, he is bedridden about 98% of the time. It has been 16 years and our children were very small when this new life began. There are rough spots all along and you figure them out as you go. I have always done everything myself without outside help and somehow made it through the isolation until I found this site actually, I think last August, it was. I'm just trying to give you a little picture to say that it CAN be done and that even with small children you can make it through this with your marriage intact.
You said that 'if you didn't love God so much you would leave but you made a vow to him and you're going to stick with it.'
That right there means that you have a lot more going for you than you realize. God never said bad things wouldn't happen, but He does say that he will be with you always. Sometimes when things are especially hard, we forget to look for Him and listen to Him, our feelings of hopeless isolation seem to great to bear and we do not realize that He uses every situation for His purpose. He is polishing you.
Marriage isn't what I once thought it was. I never knew that at times it would actually be hard, no, down-right gut-wrenching, but I also didn't know how wonderful it can be either, and that the hard stuff is what makes it better and better and that it is soooo worth it. Of course it doesn't feel like that at the time. It only feels like that once you have made it through that giant pothole in the road that you thought would swallow you up.
Yes, it feels like the whole world revolves around your husband's needs, there aren't enough hours in the day, you are tired and seem to only get more tired and you become disappointed in yourself for not having the energy to be your best for everyone who needs you to. Your worries accumulate about everything under the sun and your hope becomes a distant memory. You feel like there is just not enough of you to do everything and that you're only guessing how to do things anyway. You find yourself wondering about your children, how you can possibly take care of all their needs when you are having to do so much for your husband and how will they turn out? How are they going to make it through this? And your husband, you're not even sure where his head is, you haven't had the chance to find out because some urgent thing needs taking care of, you feel separate from him like existing in the same household without the closeness you once had. You feel lost, alone, and you just know that deep down in your soul things are not suppose to be this way. As for friends and family, no, they do not get it. If you haven't lived it, you don't get it. Believe me, I do know how you feel.
I'll say it again, "All is not lost."
There are so many things you can do to help yourself get to that place where the burdens are not overpowering you, where you can see the light of day and renew, where the possibilities and solutions can become clear.
I honestly have to say the best thing that has worked for me is to set aside some quiet time. I know it seems impossible, but it's not. This was something that I discussed with my husband and I told him I needed two hours in the morning of uninterrupted time. Of course, what I had to do was to get up earlier before the rest of the household, before the start of everyone else's day. Yeah, this meant a little less sleep for me, but I wasn't getting much anyway. It was interesting at first because I started out having no clue what to do with that time! It had been sooo long since I had actual time without someone else in it, I just sat there and tried not to watch the clock and I would listen to the quiet just waiting for a sound from one of the family. It actually took awhile of doing this before I could relax enough to let myself think on other things. Slowly I began to use the time in different ways. Sometimes something would happen and I wouldn't get that time, but that made me look forward to the next time I did have that morning chance. It has made a lot of difference for me to have those two hours to empty my head and it is rejuevenating.
For your husband in his hospital bed in the other room....I will just tell you what we've done and give you something to think about.
My husband is in bed and when I say almost all of the time, that is literal. I would go in and out of that bedroom and most of household life with the kids and the chores would take place outside of that room and it only added to that feeling of separate-ness. I made it a point to have family dinner in there with him which turned into family time with dinner & a movie. While all that was well and good, the rest of the time was still separate. I was separate from him by all I needed to do and he was left alone in there for the most part....with his pain, his thoughts, in his own isolation and frustration.
My bright idea one day was that he needed to be more near the activites of the family. Since we had dinner & a movie with him, we had stopped using our dinningroom which happens to look into the kitchen, and we all know how much takes place there. So the "bedroom" was moved into the diningroom along with the big Tv, of course. What this did for us, I cannot begin to describe. It gave us more time together. It gave the kids more time to interact with their dad. In all the usual comings and goings, running of the household, availability and convenience, it gave my husband the opportunity to be with us and us with him, because now he is located at the center of the most activities that take place besides just his needs. It did a lot for everyone's frame of mind.
I have another thought I just want to add in here, that you might give some thought to as well.
In the beginning I was working full-time when our kids were in elementary school, and besides taking care of my husband, I was also taking care of my mother-in-law who had kidney failure, so she had dialysis 3 days per week, I also took her to doctor's appointments and took care of her house and errands which amounted to 7 days per week for her on top of everything else. It was too much, really and of course I worried about our kids who I felt like I barely got to be with. I discussed this at length with my husband and though he wasn't thrilled at the time I wanted to quit my job and homeschool our children. I not only wanted to be there more, but to me this was a practical solution, also considering how it is sometimes difficult to coordinate everthing with the medical stuff which you get surprised with.
I have to say this was the best decision I have ever made in my entire life, my husband now agrees and I will tell you why....
You know how when your kids were babies and they had all those "firsts"? You know the first word, the first steps, all those first times they did or discovered something new? And how many of those were you present for? How many times did you see it and your husband wasn't there because he was working or you weren't there because you were doing something and he was with them or grandma was with them, or they were at school where none of us knows what really goes on there every minute of the day, anyway?
We have two kids, boy & girl, and while I did most of the homeschooling, my husband helped and it was perfect because he's right here in the middle of everything. He has helped so much more than he realizes. Our kids are practically grown. Our son is in his Junior year at University doing fabulously and working a full-time job at the same time, and our daughter who just graduated high-school will go to university this Fall. They are both wonderful people with heads on their shoulders, they are leaders and do not follow the crowd, they have opinions and ideas and have a firm foundation from which they exhibit wise decision-making skills, they know how to do things many adults do not know how to do, they can carry on intelligent conversations with any age any level they are compassionate, have many interests and have admirable goals. And why? Because of my husband's injury. Because of that catastrophic event that changed our lives and nearly ripped us apart, we were blessed with the opportunity to be together and to have a direct hand on preparing our children for adulthood, on watching every expression every response every new experience and influence in their lives and do our best to get them ready to face the world in all it's wonders and the evils. Together my husband and I have made this thing into being about our kids and we are both so grateful for what happened to him so that our lives could turn out this way, helping to equip to great human beings.
Right now you are saying, sure, but that is afar off, what about now?
I know it doesn't feel like it right now, but you do have so many possibilites. First you need to somehow get yourself that little block of time so that you can give your arms a rest from holding those heavy burdens up over your head. Then you need to get your husband into your life. Now don't say, "That's all I do! Everything is about him!" No, doing all the things you do have become so heavy that it just seems like it. You have to learn to share the burden with him and that means you have to talk. His being in that room while you do what you have to do isn't helping. The hospital bed isn't helping either and you need to think about a new bed you can both fit in.
You cannot know what is going on in his head and causing his behavior just he cannot know what is going on with you and causing yours unless you talk. Yeah, I know that is hard to initiate. But you can begin non-verbally with affection. Sometimes making an effort beyond what you really feel like at the time can do wonders for both of you. You may not even realize it but you miss being touched too. Begin with those quick and small things. When you give him his meds, pause, touch his cheek and look into his eyes for a moment. Don't say anything...just smile and then go about your business. The next thing you need to do for him....pause and touch him for a moment. It will speak volumes for you.
And I seriously have to tell you to climb up on that bed with him! I don't care if your hanging off the edge or if you have to climb up on top of him so you can plant a kiss on his lips and then go and do whatever you need to do, because nothing will change unless you step out of the norm that you are unhappy with. He will come along.
He has a picture in his head of what he thinks he is supposed to be for you and because of his injury, he thinks he can no longer be that guy and he doesn't know what to do or who to be. Things seem impossible to him, just like you, you have that picture in your head about what your life would be like and this isn't it. You both have to let go of those pictures. It's hard, because we've had them our whole lives, but this is not the end of it, it is a beginning in a new and different way. It's a mulligan, a do over and if you want to make it work you are going to find that life is going to be actually better and more fullfilling than you ever imagined it could be.
You're so worn out you can't even think? Go in there and be with him. "Honey, I just need to sit here for a minute....Do you know the first thing I noticed about you when we met?"
A conversation about what attracted you to each other can take you out of the present for a minute so that both of you can appreciate each other and remember why you are together. Love is bigger than any problem could ever be. Tell him. Expose your heart to him. He needs to know that you want to find a way through this, just like he needs to know when you are feeling overwhelmed. Learn to take some rest WITH HIM. Allow him to be a source of comfort to you. Not only will this make you feel good, it will make him realize something he can do for you and that is a biggy for him, especially now.
It is the same with the kids. You can have them helping you in so many ways. You are teaching them at the same time. Your husband can be involved with them, there are things he can do to make his own relationship with them grow, but you have to make sure they spend much needed time together in order to do that. They can also help you with your husband by learning to take part in his care, even with the smallest of things. At 4 and 6 they are capable of being really great helpers and that's what they love to do.
Your challenge is to find different ways to do things, ways that work for your household. You think the world revolves around your husband when really the world revolves around you, they take their cues from you, they pattern their moods from you....You are QUEEN. You are going to get in there and do something out of the ordinary, you aren't going to follow the norm because there isn't one any more. It's up to you to make your new norm.
So get in there and have a picnic with your kids and your husband. Yeah, right there on his bed if you can. Be goofy. Have FUN! We had a king-sized bed when the kids were younger. They climbed up with us and we did so many fun things together there. Seriously, think about it, think about what fun family things you can do right where HE is.
It is really strange that when you decide to do something different, a special treat for the family, how it gives everyone a boost! And that right there is a little bit of being good to yourself as well. Be on the hunt for little joys. You are in a special place where the work is the hardest, the pain is great, your emotions get wrung through a ringer, but the rewards are countless. You are going to get through this and many other things, because it is the hard places that teach you what is truly important to you. Once you start finding those, it just gets better and better.
Do what you can for 'this day'. Don't make it any bigger than today. I have confidence in you. Be good to yourself, you're going to be fine.
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I have to apologize for the length of this post, everyone, but I do have high hopes for this person and the others out there who are in the middle of similar situations.
Edited by mcwriter, 13 February 2011 - 04:35 PM.
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mcwriter, on 13 February 2011 - 04:14 PM, said:
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