Posts Tagged fires of life


Chris outsidToday is Chris’ 35th birthday. It’s a difficult day for me. Thoughts swarm my mind as I try to get on his Facebook page to read him his few messages. I see friends who are celebrating new babies, getting married, or seeing the world. Emotions can’t be stopped as I look at his mostly motionless body. My eyes fill with tears as I long to hear his voice again and wish he could tell me at least a little bit of what he’s actually thinking or able to process.

Do I read him those messages? Should I ask his friends to send a video message so he can hear their voices? I’m terrible at impersonations. lol. I notice his pictures on his Facebook page are still the same. Perhaps I should change them to reflect today’s reality. I don’t know.

I do not blame his friends at all for moving on with their lives. They should. No questions there. But it still makes my heart hurt just to see him forgotten. Tossed aside because he cannot contribute to life’s conversation. I really don’t know what, if anything, should or could be changed – just expressing how it feels to be forgotten.

One thing I have begun doing when these types of emotions overwhelm is to think of how I’ve been changed by caregiving for him. See, he’s still my son. I still love him. Actually, I continue to care for him because of that love. He can’t do much for himself but I keep pushing him – one day it might click. He is regaining some muscle control so who knows!

Even though he’s forgotten he still continues to change the world. Maybe some of us become more caring in the face of tragedy. Perhaps a few become more forgiving. There’s no doubt caregiving has changed me. I’m more introverted and less of an extrovert. I won’t go through the list of things I’ve learned about myself or my faith on this journey. It’s vast.

I’m a furnace walker. I was reading this morning in Daniel 3. There were three men facing a fiery furnace because they wouldn’t bow to a false god. I have to say on this difficult journey, there’ve been times I wanted to give up. I just couldn’t. The three Hebrew men acknowledged the ability God had to deliver them. But they said – but if not we still won’t bow.  That’s how I feel as I walk through this furnace. God can deliver at any time – and that’d be okay with me. But I really am not looking for another God. There’s not one!

I am determined to let my faith be refined in his fire. I’m determined that I won’t bow to other things that try to get my attention. You know, like fear, doubt, worry. Even though it feels like the world has forgotten my son and me – I’ll stand firm knowing that God has not abandoned in the time of trouble. He’s still walking with me in the storm and in the furnace (description depends on the day.. lol) – He won’t’ quit because it got too long or because I get too whiney. We are forgotten by men – but never by God.

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5 Years Ago Today

Today is July 1st and it marks the anniversary of the day I brought Chris home from Valir Rehab. I have to say I was terrified but determined. Living in the furnace and keeping faith is the theme of this blog, and I must say that over the last 5 years I’ve experienced both. The furnace is still hot and there are challenges to be met everyday, as all caregivers know. But at this point I am happy to report that I have kept the faith and I’m still fighting the fight.

This half a decade has been full of good things, bad things and in between things. Even as I type this post about bringing Chris home I am just emerging from a season overwhelmed by the caregiver’s fog. Honestly, I must say the fight against depression is a daily one, but one I am presently winning. The biggest thing that stands out in my memories of bringing Chris home was how afraid I was. Transfers scared me to death! I would feel myself tense up when I knew it was time to get him up or put him to bed. I can actually chuckle at that now – because he’s come such a long ways. He had so much tone back then that he was stiff as a board. He would stand up easily enough because his body would go rigid. Sitting him down back then was another story because many times we would just be stuck standing there until he was able to loosen up just enough to give me a little bend to work with. Today- he stands up, he pivots and he sits.

March 2011

He’s trying to smile –

Here’s a picture I shared right after I brought him home. He didn’t do much of anything at all back then and he had that brain injury expressionless face. Back then he got up for an hour in the morning and then an hour in the afternoon and he slept most of the time. It’s been a gradual journey but now he gets up around 9 or 10 in the morning and retires between 9:30 and 10 at night. He still gets a short rest time in the afternoon.

Back then I was glad if he ate a tablespoon of food and presently he’s eating 3 small meals a day and I am having to rely on tube feedings less and less.

Now he has so many expressions that range anywhere from beautiful smiles to looks of disgust or displeasure. I can pretty well guess what he thinks about things by his reactions. He also looks right at you and he can watch an entire TV show or movie if it catches his attention. All I can say is he has come a long way and I just want to share my thankfulness today that he is continuing to improve and I am still hanging in.

I have to say that other than dealing with the situation and the living grief on a daily basis one of the biggest things I had to get over was taking him out in public. I had to get used to the stares. In many ways I still feel like I am intruding into others lives and spaces by taking up so much room in the grocery aisle or booth at a restaurant. But I figure if it’s a problem, then someone else is the one who has to get over it at this point. We no longer live in a cave.

Many things have changed over the last 5 years (almost 7 since the accident) I cannot say I have handled them all well. I’ve fought, screamed, cried and cussed; but I have endured and come out ahead at this point in the game. Holding on to our faith sounds like a good thing to do until it is shaken. I admit mine has been shaken and at times I wanted to give up on it all. But I have always returned. The road has been rocky and I have not been a real good example many times, but today my faith is stronger than ever before. However, it is definitely worth mentioning that for me, faith, has been completely redefined.

In my world, God is not going to come riding in on a white horse to save us and make everything go our way. But He is going to walk it out with us and give us the room to throw a fit now and then. And as ugly as those fits can be – He always has welcoming arms waiting for us to settle down and snuggle up with Him again.

I guess the phrase I would chose to use is I’ve come to be at peace with my situation. Maybe I view it like the 3 Hebrew children viewed the fiery furnace in their day. I know God can deliver me at any point; there’s no doubt He is able. But like Hananiah, Mishael,and Azariah I have to say but if not…..I’m still going to serve Him. And like these three men of great and true faith – I’ve found He walks in the fire with me.

And today – 5 years later – I must say I’m okay with that.

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