Strength for the Journey

Anyone on social media knows there are tons of prayer requests that go through the feed on any given day. Typically, I will follow a link or do a search to see if it’s a valid request. Sometimes the person is already better or has passed before I see the prayer request. I usually pray for specific needs as I scroll through the feed though. But the other day I saw a request and I honestly didn’t know what to pray.

A little girl had sustained a head injury I can’t remember now if she had nearly drowned or had been shaken. Either way it was very serious. I cried for her parents as I read the request and I knew their lives would never be the same. She was in a very poor state and they just wanted her to live. Their words took my mind back to the first night I sat in ICU with my son and prayed that very same prayer. All I wanted was for him to live – where there’s breath there’s hope, right?

Since then, I’ve wondered why I prayed such a selfish prayer. It was instinctual really. As a mother we can’t bear to part with our children. I soon found myself thinking it would have been better for my son to die. Yeah, I know it’s a horrible thought – but I had it. I mean, really – what kind of life does he have? I felt so guilty for even thinking it. After a little bit of research I found out that it is actually a natural part of the caregiving process and a very normal thought. But it still just feels wrong.

All this went through my mind as I looked at the image of the parents and their unconscious child. I thought about the last 7 years of caregiving and I didn’t know what to pray. I spent years in the ministry and am usually not at a loss for words. I can come up with something almost every time. But I just sat there and stared at the picture…wondering. Weeping. Did I want to pray for her to live like the parents requested? I had a sense of the life they might live – dying every day. I was so caught in between and my emotions were raw. I’m a minister, I should know what to pray.

Then my old religious training kicked in- pray for God’s will I thought. Then my thoughts went nuts. God’s will? What a cop-out. What is God’s will? Was it His will for my son to be in that accident and sustain a traumatic brain injury? Was it his will for me to live this shell of a life for the rest of my life? My mind went through tons of scenarios wondering what His will really looks like. Is it His will for me to struggle every.single.day? Evidently it is – because it’s happening.

When my son first had his wreck, a friend said to me that it had to pass His desk first. In other words – God is still in control. Nothing happens that He doesn’t know about. That can be a frustrating thought- why doesn’t He stop bad things from happening then? Why doesn’t He prevent or eradicate terrorism and the bad in the earth? Are those His will  too? We are hashing around an age old question here, one to which there is no answer.

So I finally prayed for the parents instead of the little girl. You can judge me if you want; but you haven’t walked this walk of mine. The only peace I had was to pray for them to have wisdom and peace in every decision they might have to make and strength for the journey. Isn’t that pretty much what we all need anyway?

Is God Good?

Social media can be a very good outlet for those of us who live in a cave. It’s good to hear other people’s point of view and even though it’s long distance you can connect with others. But there’s some things nagging at me that I’ve seen on Facebook the last few weeks. On one hand, they are very good and encouraging; but on the other it’s raised some questions in my mind about how we interpret the goodness of God.

You know I am the caregiver for an adult son who was seriously injured in an automobile accident nearly 7 years ago. I see posts of wrecks and how other’s loved ones narrowly escaped serious injury. There are many times when people are sharing that they are so thankful because it could have been a lot worse.  They thank God for saving their loved one; and they should! But then they cap it off with something like “God is good!” And of course, He is. But would He still be good had your loved one suffered a TBI like my son? Would He still be good if your loved one perished as in so many other cases?

My good friend used this phrase the other day after her friend had undergone a successful surgery. It was  a very serious situation and her friend could have easily been damaged for life. Surgeons were able to perform a very complicated surgery without leaving lasting effects. She was elated – and she should be! She texted me back – “God is good!” To which I texted her back – God is good when it doesn’t go well too!…just sayin’

This morning I saw another post giving thanks (and they should!) for someone who had been sick and it didn’t last as long as typical cases of this particular disease. They were so thankful it was over – and I was too. Who wants to see people suffer? No one. They finished it off with God loves us! I was like – does He not love us when the sickness endures for longer periods of time? Would they have randomly posted that God loved us just because if they were still suffering?

I’ve come to this conclusion – God is either good – or He isn’t. He either loves us or He doesn’t and neither of these can be measured by what we face each day. Was God any less good when He didn’t spare our heroes of faith? Stephen was stoned to death with no escape, Job became very ill and lost everything (you cannot replace children!), Elisha became ill and died was God still good then? And He did not spare Christ from going to the cross….does that make Him any less good?

While I rejoice with others who are spared journeys similar to mine – I must say that God is no less good when things don’t turn out like we prefer. He doesn’t love us any less when life takes a rough turn, or we lose. I will be the first to tell you that I’ve had an attitude about this. When my son was first injured I honestly expected God to come riding in on a white horse and rescue us, spare us from such a painful situation. As time went on He didn’t show up like I thought He would. I took on an attitude (a bad one). One that said, I served You and Your people all these years and You were supposed to protect us!  I cried, pleaded, cussed and yelled at God many times over the last 7 years. He calmly waited for me to settle down and come back to Him so He could demonstrate His love to me and through me. But He didn’t make it all go away. And you know what? He’s still good.

His goodness and His love does not spare us from tough situations. He loves us whether or not our loved ones are injured or killed in automobile accidents. He loves us and His goodness endures even through the roughest of situations. We cannot use what we are going through as a measure of how much He loves us. He just loves us.

In Psalm 23, David says that goodness and mercy would follow him all the days of his life. Have you read about his life? Yes, he slew a great giant, yes he became king. But he also spent years running from Saul who had evil intent. He lost a son too. Yet he continued to proclaim the goodness of the Lord. What about Joseph? He spent years patiently waiting for God’s promise. Was God any less good those years he sat in a prison cell for something he didn’t even do? Was God any less good or less loving when his brothers sold him into slavery out of spite?

God is good – even in the deepest, darkest dungeons of life. God is good when our loved ones are spared from tragic accidents or serious injury. But He is just as good when they are not.

Sometimes You Just Need a Little Attitude!

I have to admit I have an attitude most of the time. I’ve been known to walk around with a chip on my shoulder just daring anyone to knock it off. When I brought my son home and he finally got to the point that I could take him out it was an understatement to say I felt very self conscious. I have never been one who likes to draw attention to myself and this grown man in a bulky chair does just that. And of course – I can be very clumsy at times so I do things accidentally to make it harder to be inconspicuous.

In stores I often run into stuff and if I’m buying more than a couple of items his lap isn’t big enough and things get dropped! It’s actually quite the show. lol It’s okay – I’m used to it – I run into stuff at home too. I’ve finally learned the best way to navigate the stores is to push Chris in front of me while pulling a cart behind me. It’s not quite as awkward feeling as it was at first. We’ve done it long enough now that I feel funny when I go to the store without him and his chair.

I described these to say that I swallow a lot just to get out – but it’s getting easier all the time. I’m getting more comfortable with it and I don’t dread getting out like I did for a while. However, I notice that others are not always as comfortable with it as I am. I did have a worker at one store offer to push the cart or Chris for me the first time I went. But I declined as that was awkward and I would feel like I had to hurry. People stare — grown people at that — sometimes we get a nod of compassion. I always wonder what people are thinking when they look at us. Do they have a loved one that is in a similar situation? Do they think we should stay at home? Who knows – just like they have no idea what I am thinking about their blank stares or compassionate nods.

I have to say that I developed an attitude when we would go out. Some of it is bad, some of it is good. Sometimes I play through this scenario in my mind that someone says something rude and I punch them! lol – I go to town mad and ready for someone to just say something! In most instances no one says a word (lucky for them!). But we do catch some attitudes that I always choose to ignore.

Earlier this week I pushed Chris down to the grocery store on the corner. It’s a nice walk we just have to go early and not buy much. We get some fresh air and sunshine and grab a few items we are in need of. It’s actually a good little outing for us both. Here’s a pic of when we went the other day – I obviously bought too much!

I never know if I’m going to feel like I’m in people’s way or not – and I hate that feeling. But I think I’m sort of over the attitude part. I’ve gotten to the place that it really doesn’t matter. I know I’m not going to do anything on purpose to be in someone’s way. In most cases people navigate around us easily enough; but sometimes they cut in front of us quickly like they want to hurry – and yes – I am tempted to run them over – and on a bad day – I just might!

On the way to the store, we met a lady with a dog. I feel like we hog the sidewalk so I usually try to make a joke about Chris needing to lose weight. She stopped and talked and let her cute little doggie lick Chris’ nose! It was a pleasant conversation. Then the clerk at DG talked to me about her son who works with “people like” Chris. It was a friendly gesture and very nice of her to share. When we got to the Buy4Less the clerk actually spoke to Chris (guess we’ve been in there a lot!) she said, “good morning there!” It means so much when people go out of their way to speak to him as he is mostly ignored which I understand…..On the way back to the house I wondered if it was my attitude that made it a perkier trip. Who knows?

For so long I have felt so all alone on this journey even though I know I never am alone. It takes a lot of people to help me out here and there. People sit with Chris, help me take him somewhere or help out in some other way. For instance, there’s a church that sends us food, gifts and gift cards periodically. It’s helps so much and is such a blessing. Then there’s my friend PD who is always trying to get us out of the house. She isn’t bothered at all but she works in long term care. Which is actually a reason she could avoid us – too much like work! And the friend who called this morning to say he’s coming by one day next week to put something in my van to hopefully fix the air problem.

What’s my point? I’m choosing to see the positives instead of the negatives. While there will always be jerks out there – I am not going to let them steal my focus.  I’m taking my thoughts captive (2 Corinthians 10:5) and choosing to think of the positives – those who go out of there way to help us, speak to us and develop a relationship with us, rather than those who just put up with us or feel we get in their way.Their loss.

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.

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.