Archive for January, 2014

Day In – Day Out

I’ve noticed that over all my day can be tied to how Chris does. When he is having a good day, I am more upbeat and energetic. But when he has lower performing days I can get discouraged more easily. Some of that is because I just want him to be better and I love seeing the progress. I forget that with a TBI you can be making fine progress with no visible evidence for a while. Lately since he has been sick I struggle more with various emotions. Today as I was thinking about it I realized that for the most part I deal with some emotions pretty much every single day. That does not mean that they have mastered me in any way. Nor does it mean that I have totally figured out how to control them. I’m just saying that every day, day-in day-out I have to deal with these emotions: depression, loneliness, and rejection.

In this morning’s devotion for caregivers ( ) I penned this statement, overlooked by church and society. And many times those feelings are very real. I still find it interesting of all the churches who know about our situation absolutely none of them reach out to us for fellowship. I think that I really do not miss the politics of today’s church but I do miss fellowship. I think some of that is because we are not all “down and out.” But I refuse to be the victim in this story! I will make it.  But the absence of others does weigh on me from time to time. I’m not saying it’s something that matters – just that it’s something I deal with. That can be difficult for someone whose love language is time.

I really battle daily with depression. It’s a constant struggle to keep from being swept under its awful tide. I have mentioned that I have developed some strategies to help combat it and they really seem to be working. I still have some days where I am susceptible to getting sucked in but usually I can manage to hold my head up. I can find things that I am thankful for everyday. Even some of the things that can be a burden. For instance, I can get behind on my work and become very overwhelmed. But in that moment I choose to be thankful that I have work to do from home so I can take care of my son like he deserves.

I’m actually getting pretty used to being alone. And I do not even watch TV much any more either! I am quite alright with a quiet house now. I don’t need to be entertained. I’m really not too sure why or how some of the things that go across the screen are considered “entertainment” anyway. I’ve actually been better since I turned it off. It does me no good to watch others seek to fulfill their lives when mine looks nothing like “normal” of any sort. And I’m okay with that…finally.

I realize that it really is up to me how I run this house. I can be all down in the dumps, depressed and woe is me! And get absolutely nowhere fast. Or I can suck it up, refuse to be the victim (although I am and I would have that “right” if I wanted to…) and figure out a way to get through all this with my faith in tact. Honestly, even in the midst of the struggles that is becoming easier. I’m not sure why.

I guess my point is that the struggle never ends just because a day ends. It’s constant day-in and day-out. It’s just that some days it is easier to work through than others. The point being I always get through it.. and I always run to Him. Really, where else would I go? He has been my refuge in the darkest night and the longest storm and He never grows weary or faint. I am very glad for that because I honestly do. I wonder if Daniel ever got tired and just wanted to go home. I’m sure Joseph did. They endured very long, difficult journeys of faith as well. So I will consider those who have gone on before and how they endured their afflictions and did not give up on God nor His promises even in the midst of their fiery trials. I will continue to hold on to the One who preserves and protects my soul – my mind, will and emotions. Tonight as I prepare to get my 6 or less hours of sleep, I will whisper Psalm 35:3 from the depths of my heart: Lord, say to my soul “I am your salvation.”  And I will wait for Him…in the furnace…

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I Ran out of Words

I am sure that many caregivers have these overwhelming feelings of failure. My son was in the hospital for a week and I feel like it was worse because I didn’t take him in sooner. But- he never ran a fever which is usually the first sign that something is wrong. I also thought they would just give him an antibiotic and send him home- the ambulance didn’t even run their lights on the way up there. Then it turned out he had all sorts of problems that needed attention. Boy, do I feel like I failed him? Absolutely! I feel like I am a lousy caregiver.

All I can do from here is to pick myself up, learn new signals to watch for – since he’s nonverbal – and move ahead. Can’t say if that is “faith” or not technically. But there just simply is not a place to quit. And I don’t want to. I will say that I am really tired but I am learning new strategies to help keep me from hitting rock bottom emotionally and they seem to be working…mostly. But it’s still a struggle.

For instance – I have made so many phone calls this week already trying to get them over here to get his picc line out. Shouldn’t that just be a given? By the way – I hated hooking up the IVs every morning and night. The process wasn’t difficult, the medicine just made him uncomfortable. And honestly, I have nearly zero trust of most of the medical profession right now. There are tons of reasons but I will spare any readers I may have hanging around! lol

So today is January 14- I have not been out for 14 days then. I took Chris to the hospital on December 31 and we stayed until Jan. 6. I am actually doing better with it than I thought I might. I am hoping he gets better soon so I can get him back out too. We are also going to need a few groceries at some point. I have discovered that there are a few things that you just cannot buy online. I can’t get my doggy groomed online (I ordered clippers), and I can’t by eggs, or fresh veggies online. I can’t get a haircut online either! lol – I cut it myself. What do I care? I’m not going anywhere! lol

So these are few of the bigger things I am dealing with right now and it makes me wonder about faith once again. The funny thing is that somehow it actually feels like my faith is still in-tact. I’m actually writing more and planning on writing even more. I really can’t put my finger on it but something happened when we were staying in the hospital. One day was particularly difficult. (Okay – more difficult than the rest.) The staff (except the doctor) was very understanding and cooperative when it came to Chris and the brain injury. When he was in critical care there was a nurse who had worked with TBIs before and that was nice; but even on the floor they tried to be understanding and listened to me for the most part. But one day there was too much stimuli. He was on total overload. They tried to take his blood like four times, took him down for xrays, finally started a picc line and then PT showed up to work him out! Poor guy! He was wound tight. That night I just didn’t have any more words to pray. I leaned over Chris and started singing an old favorite that my kids grew up on.

“Peace, peace, wonderful peace.

Coming down from the Father above.

Sweep over my spirit for ever I pray;

in fathomless billows of love.”

And then I started singing

“Hear my cry O Lord, Attend unto my prayer,

from the ends of the earth will I cry unto You.

When my heart is overwhelmed

please lead me to the rock that is higher than I, that is higher than I.”

Tears flowed and no one came in so I just sang those over and over because I had no other words or songs that came to mind. I really cannot tell you what happened in that moment except that His peace was just present. I just knew. I am not sure what I knew, but my knower knew that it was all alright. I simply had peace. The rest of the stay was not bad. I was comfortable and figured out my own little routine and was able to keep up with most of my writing work. By Sunday night I knew I had adjusted and was comfortable so we would be going home. Sure enough, the doctor came in on Monday morning and said we were going home. This is of course about four days shorter than he had said we would be there.

So I guess running out of words, although scary for a writer, is not too bad of a thing. And I sort of like not being able to explain what happened that night while singing over my son. That means I did not “reason” it out; He just put it all together and it was all okay.

Over this last 5+ years I’ve so struggled with the whys. I’ve discussed a lot of emotional things on here like dealing with depression, living with daily pain and grief and lots of topics. Those are still real in my life – and I experience struggles in these areas pretty much every day. But I had let all my questions cloud my heart from holding on to Him tighter. Honestly, I cannot explain it. All I know is I’m better even though nothing has changed. And I will continue to believe that God’s words about Chris (or myself) were not void or in vain. No matter how He intends to bring them about – they are still living and active. And so…I wait…..

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