God Is Good, This I Know


Several years ago on a cold winter day I had one husband, one daughter, age five, and a baby boy under one year old. The warnings had been placed and yet I didn’t really understand what the word blizzard meant.

All I could think of at that time is we had food, we had a roof over  our head. We had water and heat, and my husband may be home for a day or two from work. Now, let’s all play house and forget the outside world.

Slowly I got first-hand of what a blizzard was. It meant no going outside. No hopping in the car and running to the store. Trapped, yes that is a good word. Trapped inside with a baby with very few diapers remaining, but a family I loved.

The snow fell and fell.snow trees. The blowing snow and drifting locked us inside our house as the door wouldn’t budge to that outside world.

I started getting nervous when the baby ran too low on diapers. Today, being much older and wiser, I would have known I don’t have to use those Pampers. I could have substituted with different things I had at home.

But no, I freaked. My husband managed to open a window in the living room and he learned that the snow was as high as the bottom of the window sill. He dressed warmly and went out the window. He was able to stand up right away and looked in the window with a shit-eating grin and waving to us, he wandered off through the snow to the shed.

He got the shovel and started clearing the front steps so the door would open. He then went on and built a tunnel, more like an igloo, from the window he had crawled out of. He and our daughter did have a good time playing in that, but I was still without those diapers.

I ended up calling the police and they in turn sent a snowmobile out and when I saw him arrive he had a package of diapers on his lap.

I thanked him way too many times and offered him a steaming hot cup of hot chocolate but he refused. He made it clear there were other emergencies to attend to. I was so thankful for him, I will never forget that day.

Being in a blizzard does bring a family closer together. No work, no school, just spending time together in the snow playing, giggling and relaxing. Eating and sleeping in late, what a life that was those few days.

Now today, I am thanking God instead of a snowmobile. I prayed so much last night that God keep Al and me safe. He not only kept us safe, our water is still on.  There is heat inside. I was able to bathe Al this morning and feed him. I was able to take a shower, do a load of laundry.

Al was very restless last night but all is good. We have the remaining of today with extreme cold weather. I bundled up and went outside and cleared one path of snow a way on the wheelchair ramp. My car fought me starting but did turn over. It loved me by the time I had left it run for fifteen minutes and for starting for me I brushed all the snow off of it.

Minus 35 degrees for today and tomorrow morning will be a high of zero, no negatives. So once again I will ask God to keep Al and me safe and I will add all elderly, disabled, sick and rich and poor to remain safe and warm during this blizzard of 2014 here in Indiana.

God is good, yes Jesus loves me. How do I know? I am sitting here writing to you aren’t I?snowflakesjesuslookingdown

An MSA Caregiver on a Yo-Yo


How does a yo-yo go? Up and down, up and down, nice and steady, slow then quick.yo yo

This is how I feel. Slow and sleepy. Sometimes full of energy. Days of quick thinking, others too tired for one thought.

I wonder if this is how other caregivers feel? I wish in some ways they did, then I wouldn’t feel so stupid. And other ways I hope they don’t because this is no fun.

It seems anymore Al’s body is totally frozen. Me or the caregiver do everything we can to keep him comfortable. He has some good days which allow some laughter in the house. But mainly there are bad days, scary moments, when we hold our breath, wondering if this will be Al’s last day.

You know? I hate feeling that way. Who in the world keeps track of breathing, pain, and lack of movement, coughing, swallowing? It isn’t even normal. To a stranger it may seem like this gal is a human freak.

Today, Al was in one of his needy moods. He wanted everything and nothing. He was never satisfied. His biggest complaint was he wanted out of bed. I have heard this many times. I know that last winter when I was sick for 30 days, I spent most of it in bed.

I know how much worse I felt not being able to feel free enough to move around. I kept pondering on that as I kept hearing Al pleading to get up. So while the caregiver was here today I decided to do an experiment.

It wasn’t so much for me. I already knew the answers. It was more for Al. I wanted him to see for himself that he could not get up. I guess it was a test that I hoped Al passed mentally.

So the caregiver and I grabbed a hold of him from all sides and we set him on the side of the bed. The first thing I noticed is his legs. I hate to be so graphic but in order for you to understand how they reacted I have to speak it.

His legs reminded me of a fish just out of water. They flopped around with no control at all. Soon they quieted down and just hung there. I then asked him how he felt but he didn’t answer.

He wanted to stand. Before I answered that I asked him to hold his head up so he could see what he was doing, but he failed. He raised his head about half an inch but it wouldn’t budge above that.

I asked him to raise his legs to see if he had any control. One leg went up a couple of inches and the other didn’t rise. With the head being dropped so long I was afraid he would cut off his own breathing, so we placed him back in bed.

He still told me he wanted to try to stand. So I guess my test failed and he repeated his request for getting up. Now this is emotionally draining to me. I couldn’t please him and I couldn’t do as he wanted.

We are now using the fingers for yes and no answers. One finger for yes, two for no.  I can no longer hear or understand what he is saying. When I lean in close to him I can hear his voice, but still can’t make out the words.

Now he is laying there with no facial expressions. He ate two bites of supper. His hands are so swollen and puffy. I asked the nurse why this has been happening the past few days and she stated circulation, or lack of.

I hear Al rattling but we can’t use the Aspiration machine as the mucus is too far down in his throat, and yet his lungs don’t sound bad at all. He is not swallowing his own drool, and I think it is mixing with the mucus, making him cough so much.

So this is one of those bad days. I get so tired of reading my print back and seeing what a pathetic creature I have turned into. I have considered not writing anymore until this is over, but I don’t think I would survive as well as I have without your comments.

Let’s just face facts. I am not as strong as a Christian should be. I get too tired and too emotionally drained. I try, I really try to be positive, but it is darn hard, let me tell you. I keep finding myself begging God to release Al from his pain. Thousands of prayers are being said for him daily and yet he lingers.

If only I could make these last days worth living, but alas, I can not. All I can do is hold his hand, rub his arm, reposition him, keep him dry and offer him food. The rest is up to him and God.

I carry guilt over not doing better for him. Sorrow from watching him become lifeless, and anger at why he is being allowed to continue on with no purpose. I am sorry, today is one of those bad days. I hope for a better day tomorrow, but I need to be realistic.

Al has seen our parents and Jesus. He truly is the lucky one. He is my brother who has fought this battle with all his might. His legs may have flopped like a fish out of control, but his soul is beautiful like the fish of the sea.

fish

The Secret Place


beautiful_blue_lake_cave_in_brazil1

The Secret Place

Is this where Al lives when he leaves

A place I don’t know but can only grieve?

Is he seeing a place filled with smiles

That I can only wish for a little while?

Is he floating above his pain so great

Is he standing close to the golden gates?

Does he dream of when he was a child

When life was smooth and very mild?

Is  he sitting with our Mom and Dad

Is he speaking of all the plans he had?

Has he seen a glimpse of Jesus too

Will he come back and tell us, me and you?

Is there a spot within his heart

That he really does want to part?

I hope with all I have to dare

That he always remembers I did care.

I wish for him to have some peace

You know he was here on a life-time lease.

I told him last night that he should go

That I understand his pain and this I know.

His eyes were dazed but I know he heard

My voice, my love in every word.

When the time does come and he must go

I know I will miss him and my tears will show.

For he is the best brother no doubt

He holds my heart with a heavy clout.

So dear God I said it for real

I told him to go I made no deal.

Now when you come and lift him high

And in a blink he is in the skies.

Please keep telling him he is the best

Remember Lord he needs to rest.

I made him promise he would save me a spot

He smiled at me and took all I got.

My heart, my soul and my memories too

Will be here waiting to see him and you.

Written by,

Terry Shepherd

12.05.2013

 

 

Living is for the Breathing


castle 4Floating on the surface, waves gently passing me by. Fish tickling me as they swim by, life is good. Sun peeking out from foggy skies. I am alone. Only God is with me. I am forced to accept me for what I am able to do. I have to say hello, to hear my voice, but the only one who answers is me. Hearing the sound echo from the depth of my soul I recognize myself but never knew me before.

A tiny sperm helped mold me into the form I take today. Years of learning, hearing voices, recognizing right from wrong. Yet today I wonder if the decisions I make are right for me. While God is holding me above sinking ground I have no choice but to live or die.

Is one better than the other? Is death more beautiful than life? I have the opportunity to find out now, but no, I am not ready. Although many speak of glorious lights, golden paths, love being the air we breathe, how can that compare to what I see in my view today?

Would it make a difference if I could fly to heaven and see if it is what I have heard? Would it make living easier if I knew for sure something better was waiting at the end of the rainbow?rainbow 3

Could we live with our bad choices knowing the consequences will be short?

We live in the moment, we hope for the best. We error, we win, some times we weep in our pillow.

I have come to the conclusion that although there is fear of tomorrow and heaven is golden, we need what we are dealt with each moment here on earth. We would never appreciate the here after if our lives were not filled with tests.

One day my work will be done and God will call me home.  I will look back in my own book and smile as I know I gave all I had to give. The mistakes that I made will have been done without vicious intention. Desires that I dreamed of, wishes that went unanswered were meant to be.

Life is good. Heaven is wonderful. I am here for a purpose and I will decide to enjoy the rocks in the road. The valleys I will climb out of. The choices I make I will accept.

Living is for the breathing, looking back we won’t see our footprints. We have no choice, we either live or we die. Hold on to your hope, follow your dreams, one day you will close the last page of your book and you will smile.