50 Years Doesn’t Change Too Much


Holding Al’s hand and listening to him breathe I find myself racing back to my past. I am standing at the end of the lane. The small dead-end lane leading to no where that the world recognizes; but to all who lived in the tiny street, this was home.

I pull myself in two pieces, a child and a woman. I see Al, my little brother with his big blue eyes and wide innocent smile. He is wearing his hat with the ball on top and the flap ear pieces that cover when the winds blow.

He wants to stop at the candy store. A tiny white  house that was converted into a public grocery store. Oh this was no ordinary business. This was a mom and pop store. Filled with those emergency food items for moms. Milk, eggs and bread. For dads there were car accessories, batteries and fishing lures.

For us kids it was a place better than heaven. Glass cases filled with shelves of candies. Fingerprints remained from other little fingers of kids pointing to this candy and that. The owner sharing freebies of new candies that came in. Wanting our honest opinions he would say. What did we really think of it?

Al tugs at my jacket and points towards the door with the big silver handle. I can’t resist. I take his hand and we walk in to the smells of friendship, hugs and laughter. Al puts his fingers on the glass placing his individual mark that he was here also to pick his favorite pieces.

I had a quarter in my pocket. I pulled it out and Al looked at the shining coin and we both grinned at each other as we knew we were leaving the store with pockets filled with special treats.

All the way down the lane Al licked his sucker and I made my pieces of chocolate melt in my mouth until I could no longer feel it. About half-way home I let go of my brother’s hand and I skipped and jumped all the way to the front door.

I would look back and see Al looking at me, frozen in spot, afraid he would be forced to walk the rest of the way home alone. I hurried and threw open the door and tossed my books on the couch and took off running for Al and grabbing his hand we walked home hand in hand, me his big sister and protector, he the scared little boy of the big world..

So many memories, so many times the two of us did this together. Now as I stand here looking down at my grown brother’s face I weep into my heart. I see the big blue-eyed child now laying here afraid once again.

Afraid to let go of my hand. Afraid he will be left behind. Afraid to walk ahead without me. My legs feel weak and my heart sobs as I see where life has not really changed that much through these past 50 years.

Al and I still need each other. He still seeks me out for comfort and I reach out to him today as if once again I am caring for that little boy all over again. God has decided that we can’t get too much closer as brother and sister.

He has discovered a new job for me and Al. He wants Al to help him with some project way above what  my own imagination can dream.

As I look into my brother’s face and I see the pain and sweat from this terrible disease my heart finally breaks in two slices. I look down at his puffy and swollen hands and remember how once I had grabbed hold and walked him into that little store. Now just touching his hand makes him flinch in pain.

His legs that once rode swiftly by me on his new bicycle now lay frozen in time. His feet that once walked side by side with me now lay twisted. No longer the shape of what we know of as feet.

I can no longer understand Al’s words but I can still read his eyes and he is letting me know he is afraid. I reach out to him and tell him I love him. I assure him I love him and I will not allow him to walk this journey alone, just as I didn’t let him walk that little lane from the candy store home alone.Al and me Christmas 2013

Beautiful Christmas Cards From Wonderful Friends MSA & WordPress


It is the season to be joyous. It is the season to be with friends and family. Being in my home most of the time I never dreamed I would spend the Christmas season along with Al, my children and so many friends from the MSA Facebook sites and WordPress.

I wish I could somehow express myself in other ways for how thankful I am for you sending Al and me these beautiful cards. But alas, the only way I know is to say a big thank-you.

I was just at the hospital visiting Al. They are still adjusting medications. The doctor, Hospice and I are all involved with his care.

It was very stressful to my heart as I walked down the hall to hear my brother calling out.” I’m on fire, I’m on fire. Please Lord, I want to die.”

I walked in and he was no different from when he was here at home. Before I left the nurse was giving him one of his pain pills.

Al expressed to me that he was going to stop eating. If they didn’t give him a shot to let him die, he would starve himself. He did eat 25% of his lunch while I was there. This is about the most he has eaten in a few days.

I had them weigh him since I haven’t known his weight in a few months. He has lost another 17 pounds. All together at this point he has lost 62 pounds.

Yesterday the Hospice nurse and I had that conversation which I posted about last evening. Today, she has changed her mind. She said Al is declining. The doctor said the same thing. They believe a lot of it is his attitude. I tend to agree but only because the pain is so high.

I told them I want him to go to sleep. I told them to listen to me and hear what Al says. I explained how I felt about his quality of life all over again. So far all they are doing is adding one more pill to the two that he already takes.

I know it takes time to see if this or that works, but I can barely deal with hearing those words come out of his mouth. He is just plain miserable, there are no other words for it. I have to wonder how I would be feeling if it were me laying there with MSA. I may be wanting to die too.

It brought me some comfort that all of them listened to Al say the words he was speaking. They could not blame his remarks on my tiredness any longer. I think it opened up their eyes that he is serious. To him this is no game nor is it temporary.

I told the doctor if he can get Al comfortable, that this is my only wish for Christmas this year. He gave me a hug and the nurse gave me a hug. I didn’t want the hugs, I didn’t say what I did for any reason other than the truth.

Maybe because so many families can’t or won’t care for loved ones they are in awe of my involvement. I don’t know the reasons for anything anymore.

I don’t know what makes family refuse to call, text, or turn their backs on situations like this. I don’t get any pleasure out of going through this alone. All I know is that when Al passes I have no guilt to carry.

Caregivers go through so many emotions. So many questions as to why things and people act as they do. But I do know one thing for sure. I have a huge, huge support group through MSA and here at WordPress. Believe me, I could not have done this thus far without the strength that you have given to me.

Always remember that I will never forget those phone calls from MSA patients. I will never forget all of the Christmas cards from those that were once strangers but are now a part of Al and my life. The gifts that Al has received and me also are priceless. I want to thank Marilyn for the wonderful gift package she sent and I received yesterday. It was definitely a surprise, a nice one. Not only have you driven all the way here to meet us, you have forever remained in Al’s mind with the coca cola hat. Now on top of all that you have done for us, you send us gifts. Bless you for being the woman you are.

I pray with all my heart that Al is here for this Christmas, but if he isn’t, I know he will be looking at the brightest star on any tree. I know that he will be standing beside our parents, and I know without a doubt he will be smiling down at me and standing by himself totally free of pain.

I hope all of you take a moment and thank who ever it is that you thank, but do it, be grateful for that grouchy family member. Be grateful that your parents are still alive, or that those noisy cousins were sitting at your Christmas dinner table.

I have three children. One is definitely going to be here. One will not and the other has never let me know anything. So for this Christmas I will give thanks that I can breathe. That I can see and touch and feel. I have so much to be thankful for and believe me I will be giving my own personal thanks to God.

I want to thank;

McGrandma Paul from NC for a beautiful silver angel card.

Sandy R. from NC for Al’s coca cola bottle ornament. He is loving it.

The Culbreth Memorial UMC Children’s and Youth Choir, NC. A lovely card signed by Nolan, Ethan, Austin, Hailey, Reagon, Elizabeth, Cailin and  Jennifer.

Lucy D. from VA for the beautiful Christmas wreath card.

Pam Bower, from Canada. Pam is one of the most important people in MSA patients lives. What a blessing that I have come to know her.

Ron and Carol D. from NC, what a beautiful Christmas tree and fireplace.

Thank-you all for making Al and my holiday much brighter. You are all truly angels in our lives.christmas tree 4

 

Daily Prompt; My Precious


http://dailypost.wordpress.com, DP, Daily Prompt

Who is the person in your life who can do no wrong? Describe this person and tell us why you hold them in such high esteem.

Photographers, artists, poets: show us PRECIOUS.

Who is the person in my life that can do no wrong? I am sorry, I can’t think of anyone who can do no wrong except one lady. I used to think there were two. My best friend, L.S. and my dad.

Now being down to one I feel so lucky that I have that very best friend who I think the highest regards for. Who in my eyes does no wrong.

Now when I was a kid, not too many years back I had a few favorite people I felt could do no wrong. Idols, who I looked up to. Visits I got so excited about. Smiles so big that they showed missing teeth. Yes, those were the days. Can you guess who they were in a young girl’s life? Let me show you by photo only. I know you will guess then.

tooth fairyeaster bunnysanta clause

Bloggers


I was streaming through my Facebook page and my favorite sites. It is amazing how we are all made in the same form but yet we are  different. We look at each other and recognize our own species. Except for changes in hair, eye, weight and height, the only thing that truly separates us is our language.

Many times in my own home town I stand in the check out line and listen to those around me speak who do not speak the English language. They look like me for the most part but I can’t understand them.

There are thousands of blogs out here in cyber space. I see topics about food, love, pain, abuse, children, adults. There are some on affairs, death, illness, laughter, tears. There are even educational blogs, and topics on how to build your own web sites. You can find blogs that sell online.

I see blogs full of photography, beautiful women, handsome men. Blogs from awesome waterfalls, vacation spots. It is just amazing. My personal favorites are inspirational blogs.

http://kattermonran.com  Al has a day each week where he fills his page with great inspirations. When I am down, I run to his page to get uplifted reading.

http://utesmile.wordpress.com  Ute is another friend I have on blog world. Her pages are always filled with wonderful sayings and inspiration.

http://angelswhisper2011.wordpress.com/  Angel is where I can go when I want to have paw kiss chats. She loves cats and I certainly love Rhino our cat. What better conversation could there be?DSC00159

Although we don’t meet in person there are some on my blogs that I would truly wish to meet. Ute is one. http://girlwiththepen1118.wordpress.com/  Debbie is another friend I feel very close to. We share so much in common.

There are several blogs I follow that I can find a way to boost my faith when I feel weak.

http://myownheart.me/  Len is one lady who is very strong in her faith. She has a way with words which help comfort me. You know words are so powerful. Hugs are nice, a warm handshake helps, but those kind words stick to our hearts and never let go.

There are also blogs that are about emotional strength that I love to read. Maybe because of Al I am drawn to these. I doubt if this lady realizes how much I depend on her blog, but I always watch for it to appear in my email box so I can read it. http://thedrsays.wordpress.com If you would care to pay her a visit, please do. She loves people.

Every morning when I hop on-line I visit Rob at http://settledinheaven.wordpress.com  I get my morning java through reading his post. It is just like going to church but I get to stay in my jammies. Thank-you Rob for always teaching me about the Lord.

Marilyn,http://babyjill7.wordpress.com/ is a good woman. She and her husband actually came up last summer for a visit. Al and I both received the opportunity to meet her and her husband. Marilyn’s blog is upbeat, happy. I can learn about her awesome finds at goodwill stores. She lets me in on her secrets to staying happy. She loves helping others as she did lately, where she baked many cookies and gave them as gifts.

Then there is granny at http://digitalgranny.wordpress.com/ I love to chat with this blogger. I am always ensured I will feel better when I have my visits at this site.

I have a wonderful friend named Julie. http://jmgoyder.com/  She and I became instant friends when the time was that we thought Al had Parkinson’s. Julie’s husband has this illness too. I love to visit her site. I can see the beautiful birds she has living on her land. I can send well wishes to Ants and Ming and Julie and I have an understanding of what being a care giver is.

Bob has a large blog full of photographs he has taken. You can visit Bob over at http://pacificnorthwesttravelerdotcom.wordpress.com/ He takes many photos at his local zoo. I just love visiting his blog.

http://thelaughinghousewife.wordpress.com/ The last thing I do before going to bed is visit this blog. It makes me laugh with the numerous topics on jokes.  Love this blog.

If I want to dream and be able to visit a different country, then I go visit Viveka at mygulitypleasures.wordpress.com She is awesome. A retired chef she lets me view recipes and photos of wonderful foods she makes. She takes a lot of photos and I get to see what her country is like. I just love this lady. We have been friends for a  long time.

Well, there are so many more to mention, but it is time to go change Al and reposition him, so I have to stop for now. I hope you enjoyed your journey with me through blogs I enjoy.

In the end we are all the same. We may look a little different but we all speak of love. The love of our home town, love of photography, good jokes, food and life, and of course, writing.

Daily Prompt; Fright Night


http://dailypost.wordpress.com/, DP, Daily Prompt

What’s the thing you’re most scared to do? What would it take to get you to do it?

Photographers, artists, poets: show us FRIGHTENING.

With using my mind and not my subconcience I am admitting I am afraid of a few things in life.

1. Darkness, I hate being in the dark. Walking outside in the dark. The unknown of the dark. Who is lurking around out doors at night? My imagination can run wild. I prefer to stay inside once I can’t see light anymore. I prefer to not have to get out of bed once I turn the lights out.grey trees

2. Heights, I hate heights. Anytime I stand on a chair or a ladder, my legs turn to jello. My feet become cemented to the surface. My whole body becomes a dance of wiggles and shakes. I guess the fear is of falling. What else could it be?ladder

3 and lastly, spiders. Anything that crawls that has two or more legs, is shorter than me and quicker than me sends shivers down my spine. Forces me to race for the broom, mop, fly swatter, anything I can defend myself with.

I figure I am afraid of it getting me. Will it bite me and hurt me? Will its sting be fatal? What a baby I am. Something so tiny compared to my height and yet I go running for the hills.

cookie, spiderChatteringTeethspiders_4aFrogsgreen bug 3ratscared_facescared womanspider

Daily Prompt; Come Fly With Me


http://dailypost.wordpress.com/2013/11/13/daily-prompt-travels-2/, DP, Daily Post

Share a story about the furthest you’ve ever traveled from home.

Photographers, artists, poets: show us TRAVELS.

In my mind, I have traveled the Universe.canoe I have visited from North to South, East to West. I have seen the homelesshomeless. I have seen the rich.empty_house_by_scarlettletters-d3fenj7 I have seen death and I have seen birth.angel childrose

I have seen the mountains and I have seen the valleys.nature skieswave_tourist

I have seen the smiles, I have seen the tears. I have seen the joy and I have seen the sorrow.

In my mind there is no where I haven’t been. I have traveled the universe.

Weekly Photo Challenge; Habit


http://dailypost.wordpress.com/2013/11/08/weekly-photo-challenge-habit/, #Post a day

 

This week, show us something that’s a HABIT. It could be your daily walk to the bus stop, or your daily paper lying on the doorstep. Maybe it’s the guy behind the counter at the deli you always visit for lunch, the stuffed bunny your child must have at bedtime, or the view from your desk as you sit down to blog.

Capture a moment both constant and fleeting. We look forward to the glimpses into your everyday.

Every day is the same, whether it is Monday or Sunday. I get the coffee pot on. I brush my teeth and wash my face, and run a comb through my hair.

If all is quiet, I hurry and turn the computer on, hoping to get a jump start on emails, responding to friends on FB and getting ideas for writing.

Once Al is up, it is feeding time, bathing time, clean clothes and changing the bed. Somewhere in there I try to gulp down that first cup of coffee with razor in one  hand and cup in the other.

Life speeds by those first minutes in the morning. After that is over I fill my cup back up and sit at the computer. I smoke a cigarette and drink some more coffee. Then I go feed the cat, take my diabetic medicine, clean the cat box and then I hear the bell ring. Time to go see what Al needs.

christmasoct 13 14Al July 4thbathing a patientaddictedtointernetcigarettevintage-teacupsmaidclockChatteringTeeth

Blog of the Year 2013 Award


http://thethoughtpalette.co.uk/

has nominated me for the Blog of the Year 2013.Blog of the Year Award 6 star jpeg

I was so honored last year when I won this very nice award. Excitement filled me to win any type of award for my writing.

When I started writing a year and a half ago, it was because God told me to. I had never written anything other than petty marks on my private note pads.

Even today I am humbled and honored to receive this award once again. I have made so many friends. I never in my wildest dream thought Jesus would ever bless me with loving friends who take the time to read my thoughts.

So many of you have been put through repeated stories of my woes of my brother’s illness. There have been those this past year who have asked me to try to write a book. I am still waiting but I do know that it is in the publishing department and to be out by Christmas.

I will feel like the biggest gift I could ever leave my three children is a part of my thoughts. Something for them to go back to and look through once God has taken me  home.

Some of you have asked me to test the waters in writing poetry. I have learned that I really enjoy this part of writing. I have played around with my writing, adding music to it, changing the words of the original song to how I am feeling that day.

I have been able to start a music page and a quote page. I have done quite a bit of healing through my writing. God knew that I would be a better woman by writing and he has never led me a stray.

Thank-you God and thank you friends for allowing me to be myself here at WordPress.

pink starsAnd now for the nominations. There are so many but I will randomly pick out a few.

Al
kattermonran.wordpress.com/

lenwilliamscarver
myownheart.me x
grammielen@gmail.com

jmgoyder
jmgoyder.wordpress.com

utesmile
utesmile.wordpress.com

babyjill7…Marilyn Griffin
babyjill7.wordpress.com

granonine
lindasbiblestudy.wordpress.com

Thank-you again Alyson!

 

Daily Prompt; Pep Rally


http://dailypost.wordpress.com/2013/10/29/daily-prompt-cheer/, DP, Daily Post

We all know someone who could use a pep talk… so write them one!

Photographers, artists, poets: show us CHEER.

I Promise To Try Harder

Al when he was little

I promise to try harder

To not feel bad

To be more positive

To not cut myself down

To smile more often

I promise to try harder

To accept what is happening

To reach for each moment

To treasure each gift

To not think ahead

I promise to try harder

To be more understanding

To carry more patience

To comfort your tears

To listen to your words

I promise to be the

Best darn sister you

Could ever wish for

On our trip walking

Through M.S.A.

time-standing-still-katja-zuske

Daily Prompt; Simply the Best


http://dailypost.wordpress.com/2013/10/25/daily-prompt-culture/, DP, Daily Prompt

NASA is building a new Voyager spacecraft that will carry the best of modern human culture. What belongs onboard?

Photographers, artists, poets: show us CULTURE.

shuttle-ferry-atlantis_1199_600x450Putting aside all of the mechanical brilliance aside; I am looking on the inside of the capsule. Who and what is going to be making this adventure. Spending time together, not much room it needs to be a perfectly balanced scenario.

So in my thinking we need:

 

handsvegetablebottled waterBeautiful-UK-weather-_t2fePRAYER_2jesus_in_heaven.jpg