The Best Day Ever
You get to enjoy the best day ever — describe in…
You get to enjoy the best day ever — describe in detail what that means to you. Where are you? What will you do? What’s the weather like? What will you eat? Who will you see?
Photographers, artists, poets: show us INDULGENT.
Let’s forget reality for today. Let’s pretend that every wish I wanted does exist and come true.
Today is Christmas. The lights are twinkling on the seven-foot tree. Christmas music is playing in the background. The scented candles are lit. The scene is lit and I am standing calm in the doorway. I have my velvet red dress on with matching necklace and earrings. My shoes are the matching color of my dress.
I open the front door and welcome with a big smile my family and hug each one as they enter my home.
Everyone comments about the delicious smells that are drifting their way from the kitchen. They each place their wrapped gifts under the tree. There is no worry from me this year that all here will not walk a way without a few gifts and goodies of their own.
Al is in his recliner watching The Christmas Story. I call out to him and he comes out to the kitchen with the biggest smile. He hugs me and thanks me for making this such a wonderful Christmas for him.
Everyone is seated in their marked seats at the big dining room table. Candles glowing bouncing off the crystal glasses. Festive red and green napkins hug the bright red tablecloth.
The conversation is awesome. Everyone is on their best behavior. The food is delicious. The desserts are eaten. Afterwards all jump in to help clear the table and do the dishes as the kiddies are mingling around the Christmas tree with squeals of delight on opening their gifts.
I take lots of photos so that I may share them with my friends here on WP and FB. The day lingers and the memories I am building are that this is the best Christmas ever.
But the bubble is burst and I sit here in the silence on Christmas morning. I haven’t heard any stirring from my brother and I fear just a little to walk in his room. For he has repeatedly told me he will not be here for Christmas.
But hopefully I will walk in and wish him a Merry Christmas. I can hope that he smiles back at me in silence. I will bathe him in bed. Place him in a dry brief, position him on his side and turn the movie on which has to be The Christmas Story.
I will go to the kitchen and find some clear liquids for his breakfast since yesterday he vomited three times. Thick mucus is building up in him and he is choking. Swallowing as of yesterday has become a very difficult thing for him.
I will sit with him and feed him and give him his medicines so his pain is lessened. Afterwards I will swab his mouth and shave his face. I will go to the silent kitchen and begin the preparations for the noon meal. My memories will come alive as I relive past Christmas Days when Mom and Dad were not in heaven.
My son will arrive shortly before noon and they will play with their children while I cook. Silent tears will fall for what once was. My children in our home. Al not in his bed dying. Laughter and music filling the air.
Dinner is served. Some conversation will be done. Al will be in his room and I will make the best of this situation with God‘s help. Gifts are opened and then they leave for another day of sharing with their extended family.
I look at the mess and I check on Al. I begin clean up duty as it won’t be long until the aunt I haven’t spoken to in six years comes to visit Al at his request. I pray that the visit is nothing less than good.
I ponder on what time my daughter will arrive on Thursday and begin to prepare for the new day.
Merry Christmas Al, Merry Christmas my children where ever you are. I miss you Mom and Dad. I wish things were different.
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…
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.
I was commenting on a dear friend’s post tonight and suddenly a few happy tears fell. Remembering Christmas‘s long ago when children squealed with delight. Hands clapping wildly and smiles from ear to ear.
We learned about baby Jesus in Sunday School but if I am honest, it was more exciting to wake up on Christmas morning. Mom and Dad were the best Mr. and Mrs. Santa Clause all around. We didn’t get hoards of gifts but what we got is exactly what we told Santa we wanted.
Each Christmas was like that until the year I got married. When Christmas morning came there was no one to celebrate it with first thing in the morning. Although I had my husband, it was different.
I still could not wait to go to Mom and Dad’s on Christmas Eve. Every year it remained the same at my parents. Christmas Eve was an unspoken saved time where we knew we were going there for dinner, treats, and gifts.
Spending the time with my entire family back in those days was a true joy. What a gift it would be today if I could have a peek and relive just one of those wonderful years. Both of my parents are deceased. My half-sister has pretty much disowned me. So it is definitely not the same now, but I do celebrate with my children and grandchildren.
New traditions to try out and add to many years to come. New memories are added but deep, deep within my heart is that little void and those silent tears for what once was.
My Dad had a little thing he would do for us three kids every year. He would wait until all the gifts were opened and then he would rise from his chair look at me and smile and slowly walk a way going to his bedroom.
When he returned he would have three brown paper lunch bag sacks. In each sack was a giant Hershey chocolate candy bar and a two liter bottle of coke. He would grin from ear to ear as he handed it to me.
My dad got a big kick out of Christmas. Of the entire year, this was the only time he truly enjoyed shopping. He didn’t care or he didn’t voice it what he got in return. I remember I used to buy him long john underwear a lot. Dad worked for the County Highway. He drove a truck and during the winter plowing, sometimes he would get stuck outside more than inside the truck.
But for me, I will be thinking this year about Christmas. It will only be Al and me sitting here, but my thoughts will be looking up to heaven and seeing Dad smiling down at me holding that brown paper lunch bag sack. He will be handing me my chocolate bar and coke. But this time I will not just say thank-you Daddy. I will jump up and wrap my arms around him so tight and squeeze him crying out how much I miss him and how much I still love him.
My Daddy, my hero of my world died six years ago Dec.1. I love you Daddy. I can’t wait to see you again. We will share that candy bar and that big coke. Hugs, your daughter, Terry.
This is my Daddy when I was caring for him while he was dying from Leukemia and Myaloma. I am the blonde next to him with my head tilted.
Every time little Billy went to town with his Mommy he stopped in front of the toy store and watched the little train going round and round on the track. A big black engine with plenty of shiny silver on it. Four cars followed it in colors of red, green, blue and gold.
Mommy always tugged at his arm to follow him but he fought it, wanting to stay one more minute to watch. He heard the familiar words of how she wished she could tell Santa to bring it to him on Christmas morning but Santa had too many other children to visit and she wasn’t sure he would be stopping at their house this year.
Mommy had lost Daddy. He had worked in the mines. One day there was a terrible accident and Mommy told Billy that God needed Daddy so he wouldn’t be coming back home.
Life had been different since Daddy was gone. The three of them used to hold hands and pray before they ate their meals but ever since the one chair sat empty, Billy ate in front of the television and Mommy stayed in her private room.
If Billy stopped chewing he could hear his Mommy crying. She sure must miss him. Mommy sometimes went to other ladies houses and came home all dirty and tired. She would walk in the door and barely smile at Billy before she went to her room.
Soon he would hear the tub filling up with water. Mommy would come out later and give him a hug and then go to the kitchen and find him something to eat for supper. They used to have grand meals.
Just sitting here thinking about it made his mouth water. Nice big pieces of meat with lots of fluffy white mashed potatoes. Now a lot of the times she brought him a peanut butter and jelly sandwich. When things were good he got milk to drink. Most of the time though it was water.
One time a knock came at the door. It was the neighbor. A kind looking lady who asked Mommy if she could take him to church with her this coming Sunday. Mommy said yes and from that day on Billy went to church.
Billy began to open up to his new Sunday family. He made new friends in his Sunday School class. The day before Christmas his Sunday School teacher gave him a white sack. When he opened it there was an orange and lots of chocolate pieces of candy.
That night as we was watching TV Mommy walked out and sat beside him on the couch. She put her arms around him and she started crying. He stopped eating and listened to her as she explained why she wished with all her heart that she could have gifts under the tree for him, but she just couldn’t do it.
He rubbed his Mommy’s hand and told her it was alright, that he didn’t mind. She stood up and went back to her room. He finished eating and watched TV until time to go to bed. After he went to bed she came out to the kitchen and made herself some coffee.
There was a knock at the door. When she opened it her neighbor and their friends from church were standing there with wrapped gifts. Mommy started to cry as she let them in and they quietly placed the gifts under the tree.
As the last person placed his gift Mommy went to him and gave him the biggest hug she could muster. They each hugged and said good-bye. Mommy got her coffee and went to bed smiling.
The next morning Billy got up and went out to the living room to turn the TV on. His eyes became big as saucers as he noticed the shiny packages under the tree. But the biggest surprise ever was the little train going round and round with the big black engine with the four cars following it.
I want to thank Bonnie Llewellyn. She not only sent Al a card with cute little birdhouses and…
I want to thank Bonnie Llewellyn. She not only sent Al a card with cute little birdhouses and birds, she also sent me a card. For some reason she thinks I may be on the naughty list. I thought that was such a cute card and I thank-you Bonnie for making me laugh today.
I want to thank Renee and Ed, of Photographic Memories, LLC for a beautiful card they sent to Al. It is a blue and brown card with the three wise men on camels. It is gorgeous. Thank-you Renee and Ed.
I want to thank Marlene and Little Binky. An adorable black and white cat. It is a beautiful card with photos of Melanie and Binky. We love it and thank-you Melanie.
All who have sent cards I want you to know how much Al loves them. He holds them and looks at the pictures. I read them all to him as his sight is not that good any longer. He holds your cards for hours.
If anyone else still wants to send him a card, please email me at
for the mailing address.
I will never forget the kind gestures you have done to help make his Christmas brighter.
Al is still in the hospice hospital. They are having some issues on getting the right pain medications to manage his pain. I think the problem is his pain is bigger than the illness and all of the medications out there. They have tried different ones. They work and then they stop.
I am thinking he is coming home tomorrow but I am not positive since he is in there for medication management. Please keep him in your prayers. He has great pain in his shoulders, neck and feet as his body is contracting from MSA.
When I try to stand him to change him he can no longer stand on his feet. They are so contracted he ends up on his heels which causes great imbalance problems. This illness is not going to stop until it has caused every part of his body internally and externally to contract and stop.
I just hate watching this. With all the progress doctors and scientists have made they still do not have any kind of cure for this ugly and painful disease.