New realities
Ryan will be a complete work before the Lord calls him home. This has helped me grieve the current and daily loss of him as he was. Following the pent up anger, I'm still able to appreciate him for what he was, furthering my ability to remember him in that context instead. It's lead me down a healing path. I'm able to appreciate the small moments for what they are, without storing any hope that things will improve or change. I've never known how not to live in expectation. What a strange lesson. It's somewhat disheartening, but also freeing. Life is less of a "wait and see" and more of a "live and see." There is a difference. But, honestly, we still don't like that we're having to learn to live this way in the first place.
Ryan will be complete in the end, but what will that look like? As Ryan worsens, how can true peace be accomplished? He used to be capable of grasping and learning new things by leaps and bounds. He seems to be headed backwards. He's losing grasp, even on concrete things like Christ. He isn't growing to be more seasoned in his walk with Christ like most will in their end times. It's all in reverse.
Reality hit me upside the head this last week. The past two months the boys have been waking up at 6 a.m. Which means early nap times, which means more hours to keep them occupied until dinner, and a grumpy, hellion battle to keep them up until it's bed time. These days I'm barely able to keep my head above water. Last week, we had several of those days. By Friday I was toast and half asleep by the time Ryan got home. I asked him to help get dinner ready for the boys so I could get a ten minute cat nap. The most heart breaking thing happened. He looked at me with whale eyes and said, "How? What do I do? I don't know what to make them." Some women may say that's a normal response, but let me tell you that he has fed them dozens of meals before. Heck, he was feeding them meals five months ago. Heating up a hot dog, slicing cheese, opening a package of peaches, and placing carrots on their trays isn't rocket science. I pointed out where everything was, how to heat it all up, how to open the packages, and explained that the boys basically feed themselves if the food is prepared and put in front of them. Ryan became so stressed and overwhelmed by the concept that he stormed out of the kitchen and vegged out with a book for the rest of the evening. Needless to say, I fed them dinner. No break. No rest. On my own again.
I was in shock and deeply saddened. This really is where he is at. No wonder he doesn't eat meals with us anymore. He literally cannot handle it. Sometimes I find our life incredibly comparable to The Time Traveler's Wife and The Curious Case of Benjamin Button. What a terrible hybrid.
Moments my Ryan returns are fewer than they were even two weeks ago. Those special times with him are growing more and more seldom. So many people have said, "Well, you don't know yet." Or, "The doctor said this might get better." These statements undermine what we go through day to day. This is brain cancer we are dealing with and it's not getting better. It's getting worse. And I'm over living in expectation that things will improve only to be terribly disappointed when they don't. It's exhausting. Maybe long term things will improve, but not as long as Ryan suffers like this.
His fatigue is exceptionally extreme. He can only tolerate minuscule amounts of time with us. He can't even handle the dog. I'm afraid this may be all we get and, somehow, I'm going to have to be content with that. How? Although I'm learning some necessary skills to do this myself (practical, day-to-day), I'm still angry. I'm angry that he can't handle being a dad. I'm angry that I can't hold any expectation to him. Our home has become an incredibly stressful environment for him, enough to bring him to a breaking point. I'm angry that I'm the only one changing diapers, bathing the boys, putting food on their plates, cleaning dishes, cleaning house, cleaning yard, keeping track of his medications and appointments. I hate this responsibility. I hate that this has gotten dumped on my lap. I don't want anymore! For once, I want to be taken care of. I've never known an exhaustion like this. A break is only a break. Our reality is waiting there for me every time I walk back into the door.
Ryan has experienced unbearable amounts of loss and, for the first time, I'm seeing him check out of this life and everything in it. His job is the only thing he feels he can succeed at. We don't know, but even that may be a loss he has coming in the future. My heart breaks for him. I know I could never walk the path he's walking. I hoped this would look different for him. I hoped for more peace and less angst.
Yet, here we are at the ending of another day. Last entry I mentioned God's not giving us enough to live comfortably. He's giving us what we need for a day. All of us are given enough for one day at a time whether we are aware of that fact or not. We are INCREDIBLY aware and it's no less than excruciating. One day really is that hard.
We have some incredibly difficult decisions to make in the near future, decisions I hoped we would never have to make while Ryan still walked this earth. I'm discovering to make this livable, I need at least two nights a week separate from Ryan. As much as I've fought this, I'm feeling led in this direction. Ryan and I have discussed it, but I dread what this will do to his heart and his hope. Unfortunately, it would be much less stress on all of us.
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Ryan will be complete in the end, but what will that look like? As Ryan worsens, how can true peace be accomplished? He used to be capable of grasping and learning new things by leaps and bounds. He seems to be headed backwards. He's losing grasp, even on concrete things like Christ. He isn't growing to be more seasoned in his walk with Christ like most will in their end times. It's all in reverse.
Reality hit me upside the head this last week. The past two months the boys have been waking up at 6 a.m. Which means early nap times, which means more hours to keep them occupied until dinner, and a grumpy, hellion battle to keep them up until it's bed time. These days I'm barely able to keep my head above water. Last week, we had several of those days. By Friday I was toast and half asleep by the time Ryan got home. I asked him to help get dinner ready for the boys so I could get a ten minute cat nap. The most heart breaking thing happened. He looked at me with whale eyes and said, "How? What do I do? I don't know what to make them." Some women may say that's a normal response, but let me tell you that he has fed them dozens of meals before. Heck, he was feeding them meals five months ago. Heating up a hot dog, slicing cheese, opening a package of peaches, and placing carrots on their trays isn't rocket science. I pointed out where everything was, how to heat it all up, how to open the packages, and explained that the boys basically feed themselves if the food is prepared and put in front of them. Ryan became so stressed and overwhelmed by the concept that he stormed out of the kitchen and vegged out with a book for the rest of the evening. Needless to say, I fed them dinner. No break. No rest. On my own again.
I was in shock and deeply saddened. This really is where he is at. No wonder he doesn't eat meals with us anymore. He literally cannot handle it. Sometimes I find our life incredibly comparable to The Time Traveler's Wife and The Curious Case of Benjamin Button. What a terrible hybrid.
Moments my Ryan returns are fewer than they were even two weeks ago. Those special times with him are growing more and more seldom. So many people have said, "Well, you don't know yet." Or, "The doctor said this might get better." These statements undermine what we go through day to day. This is brain cancer we are dealing with and it's not getting better. It's getting worse. And I'm over living in expectation that things will improve only to be terribly disappointed when they don't. It's exhausting. Maybe long term things will improve, but not as long as Ryan suffers like this.
His fatigue is exceptionally extreme. He can only tolerate minuscule amounts of time with us. He can't even handle the dog. I'm afraid this may be all we get and, somehow, I'm going to have to be content with that. How? Although I'm learning some necessary skills to do this myself (practical, day-to-day), I'm still angry. I'm angry that he can't handle being a dad. I'm angry that I can't hold any expectation to him. Our home has become an incredibly stressful environment for him, enough to bring him to a breaking point. I'm angry that I'm the only one changing diapers, bathing the boys, putting food on their plates, cleaning dishes, cleaning house, cleaning yard, keeping track of his medications and appointments. I hate this responsibility. I hate that this has gotten dumped on my lap. I don't want anymore! For once, I want to be taken care of. I've never known an exhaustion like this. A break is only a break. Our reality is waiting there for me every time I walk back into the door.
Ryan has experienced unbearable amounts of loss and, for the first time, I'm seeing him check out of this life and everything in it. His job is the only thing he feels he can succeed at. We don't know, but even that may be a loss he has coming in the future. My heart breaks for him. I know I could never walk the path he's walking. I hoped this would look different for him. I hoped for more peace and less angst.
Yet, here we are at the ending of another day. Last entry I mentioned God's not giving us enough to live comfortably. He's giving us what we need for a day. All of us are given enough for one day at a time whether we are aware of that fact or not. We are INCREDIBLY aware and it's no less than excruciating. One day really is that hard.
We have some incredibly difficult decisions to make in the near future, decisions I hoped we would never have to make while Ryan still walked this earth. I'm discovering to make this livable, I need at least two nights a week separate from Ryan. As much as I've fought this, I'm feeling led in this direction. Ryan and I have discussed it, but I dread what this will do to his heart and his hope. Unfortunately, it would be much less stress on all of us.
Copyright 2014 ->Renee Sunberg
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