My Life with NF2

This version of Melinda’s memorial service at Grace Baptist Church in Cedarville has been upgraded with better audio. The videos shown at the service have also been added for better viewing.

Come to this page Saturday to watch Melinda’s memorial service from Grace Baptist Church in Cedarville, Ohio.

The service begins at 3 p.m. Eastern time. The stream will begin at approximately 2:45.

Click the play button below.

The audio might not be strong with this stream. If you’d like a follow the audio stream simultaneously, click here. The audio stream will begin at approximately 3:04 p.m.

(I wrote this in advance, knowing this day was coming, yet wanted the final post to be from me.)

Dear Family and Friends,

When the first comments about starting my own blog were mentioned, I did not think much more about the subject–until the comments continued to happen from both friends back home in Colorado and new acquaintances here that were just learning of my story. “You should start a blog,” was most common to hear; only once did I hear it in the form of a question. I never knew how to respond. For starters, I did not know how to manage my own web page or even what I would write about, other than the health update entries for extended family and friends. My beginning days of writing viewed posts as more entertainment…but as my health started to change, so did my writings. I entered a new door in the social world through my blog—sharing my journey in the joys and pains was now so much more meaningful. It became my spiritual journal.

Ecclesiastes 3:1-2a reads, “For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die.” My journey here on Earth is complete. As you read this, your hearts may be saddened, angry or full of questions because I am no longer here with you. In your grieving, remember that in dying, I now live—freely and for all eternity. It is my prayer that you will come to know the same peace that God showed me, again and again, during the most painful times…times of chaos, confusion, and frustration. In the Gospel of John, Jesus tells His disciples, “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world,” (16:33).

Anytime in my journey when more changes occurred and I had to face new challenges, I would sometimes sit and reflect on what God had done—His timing perfect for every need, protection, preparing me for the next step. The latter part was not always easy and it took me years from the first diagnosis to finally surrender everything. It was then that peace found a home in my heart…it was a source of strength when I was weary and a light of hope when all seemed lost. I did not ask to live a life with a terminal, rare disease. But I could never imagine living a full life without it.

Life is a gift. In my sufferings and darkest moments, there were times when I thought about Jesus…suffering and dying for my sins, your sins, the sin of the world.  “I don’t know how He did it,” I told Mom through heavy sobs. We just sat in silence for a minute. But Jesus said to take heart…because He did not remain in death, but overcame it. He Lives! And it is the gift of Salvation that in suffering and dying, we live.

My dear family and friends…Thank you for walking alongside me during my journey. Your encouragement brightened my days and your prayers were daily answered. I want to encourage you now, as you continue your journey…remember to take heart and look to Jesus. “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation 21:4

Love, Mel

 

Melinda Sue “Mel” Pinkerton 

March 8, 1988 – April 7, 2016 (Age 28)

Melinda S. Pinkerton died peacefully at Pristine Post-Acute Care in Jamestown, Ohio, on Thursday, April 7^th, at 10:17 P.M. under the care of hospice.  Melinda was surrounded in her final moments by her three sisters and her parents, and we take comfort that she knew all of her family was with her in the end.  She had been diagnosed 14 years prior with Neurofibromatosis Type 2 (NF2), a disease for which there is currently no cure.  In spite of her extensive physical struggles and many brain and spinal cord tumors, Melinda chose to live her life with purposeful intention.  She filled her days with faith, friends, and fun.

Melinda was born on March 8, 1988 in Voorhees, New Jersey, to Cory and Bonnie McDaniel and two excited older sisters. Cory’s death preceded Melinda’s birth. Even as a child, Melinda was helpful and sweet and was always thinking of others. She could often be found in the kitchen helping her mom.  Melinda had a love of music which started at a young age.  Melinda played flute, piccolo, piano, and bass guitar.  Later, as she lost her hearing due to her tumors, she expressed her love of music through sign language or by quoting lyrics to encourage herself and others.

In high school, Melinda was very involved in her church youth group and loved attending summer camps and mission trips. Melinda always struggled physically, but this did not stop her from being on the high school cross-country team. During her freshman year of high school, Melinda was diagnosed with NF2. Amazingly, Melinda continued to keep up with all of her school work and friends in spite of repeated rounds of radiation and extended stays at the Children’s Hospital in Denver.

Upon graduating from Monte Vista Senior High School, Colorado, in 2006, Melinda attended Colorado Christian University, Lakewood, Colorado. She has always referenced her years spent in Denver as “the best years of her life.” She majored in Business Administration, graduating a semester early while simultaneously receiving chemotherapy. What got her through hard and sick days was her unshakable faith in God, an incredible support system of friends, and the kids at “The Third Story,” an inner city ministry of Westside Church for underprivileged youth.  One of Melinda’s dreams was to travel, but her constant treatments and health conditions made this difficult. She did fulfill a lifelong dream in 2010 when she was finally able to travel oversees and experience Greece.

Summer of 2011, Melinda moved with her parents from Colorado to Cedarville, Ohio. Melinda loved being closer geographically to a lot of her extended family. Melinda enjoyed many things about Ohio, however, she refused to assimilate to Ohio football culture, clinging determinedly to her ever-favorite team the Denver Broncos!  Melinda’s favorite store was Target, and she worked there both in Denver and Beavercreek to support her love of fashion, coffee, and books. Shortly following the move, Melinda went fully deaf. As a way to cope especially with the loss of music, Melinda turned to painting as a creative outlet.  She participated in local art shows, and loved giving away her paintings to friends and family as gifts.  Also during this time, Melinda started a blog to share her journey and faith.  This can be found at www.mylifewithnf2.com.

Eleven months prior to her death, Melinda’s health took an extreme turn which made it necessary for her to be moved to a nursing home.  She was no longer able to walk due to her tumors, and she also lost her vision shortly after moving into the home.  In spite of being wheelchair-bound, completely deaf, and fully blind, Melinda continued to paint, blog, and write letters.  She dictated all of her messages, and a unique communication system was devised to allow her to keep in touch.  Melinda loved entertaining visitors in her room and looked forward to daily visits from friends and family, especially her mom.  Although Melinda sat in constant silence and darkness, she used her time to pray for those she loved, meditate on God’s word, and compose new letters, blog posts, and artwork in her mind.  Many of her last art pieces were completed while totally blind.  With the help of her aides, friends, and family, she was able to continue doing these special hobbies that she loved.  She never lost her sense of humor.  Even in the hours prior to her death, Melinda continued to think about others and make those in the room smile and laugh.  Selflessly, Melinda donated her tumors to Cincinnati Children’s Hospital to help further research to find a cure for others with NF2.

Melinda was preceded in death by her biological father, Cory Ian McDaniel, who passed away in 1987 from the same disease, NF2.  She is survived by her loving mother Bonnie Sue Pinkerton, her devoted adoptive father Mark David Pinkerton, and her three sisters Melissa (David) Nickerson, Megan (Garrett) Slifer, and Marcia Pinkerton.  She was a proud and adoring aunt to her young nephew, Landon Nickerson.  She is also survived by all of her grandparents, Robert “Bob” and Mildred “Milly” McDaniel (paternal), Alton and Marilyn Flint (maternal), and Alfred and Lois Pinkerton (adoptive).  Melinda also has a large extended family, all of whom she loved very dearly. Finally, Melinda leaves behind her loyal black cat “Muffy” who she had and loved for 12 years.

A celebratory memorial service will be held on Saturday, April 23^rd, at 3:00 P.M. at Grace Baptist Church in Cedarville, Ohio.  Visitation will take place from 1:30 p.m. to 2:45 p.m.  A private graveside service will be held at Massies Creek Cemetery before the memorial.  In lieu of flowers, Melinda requested that all donations and charitable gifts be split evenly between “The Children’s Tumor Foundation” and “The Third Story.”  Donations will be handled by Powers-Kell Funeral Home in Jamestown, Ohio, at www.powerskell.com/notices/Melinda-Pinkerton.

As Melinda would say, “And that’s my story!”

When I paint . . . I feel normal . . .

The Work of God’s Hands,  by Mel

He made the night, He made the day
Spread the earth upon the waters, made the Heavens and the rain
Look at the sky, see its design
The very same creator, He’s the one who gave us life

And what is man that He’s mindful of us?
We’re merely clay in his hands
And what am I that He loves me so much, He would die
You know, well I can say is

It’s God, truly God
Can you see, can you hear
Can you touch, can you feel
It’s God, truly God
I can’t explain any other way ‘cuz it’s God

Inside us all there is a void
All mankind is searching for the one who fills the soul
In Him there’s hope, in Him there’s life
The world cries for a Savior that’s right before their eyes

And what is man that He takes us in
As His children to be His own
And what are we that He wants to be our Father
All that I can say is

It’s God, truly God
Can you see, can you hear
Can you touch, can you feel
It’s God, truly God
I can’t explain any other way ‘cuz

It’s God, truly God
Can you see, can you hear
Can you touch, can you feel
It’s God, truly God
I can’t explain any other way ‘cuz it’s God

Lord I praise You for Your endless love
Your boundless grace, I stand here amazed

What is man that He’s mindful of us?
What am I that He loves me so much
What is man that He takes us in
What are we that He wants to be, God

God, truly God
Can you see, can you hear it
Can you touch, can you feel it
And it’s God, truly God
I can’t explain any other way ‘cuz

It’s God, truly God
It’s God, truly God
It’s God, truly God
I can’t explain any other way ‘cuz it’s God

Rebecca St. James – God Lyrics | MetroLyrics

A few days before we were going to celebrate my nephew’s one-year birthday, a friend came in to chat before dinner.  She asked, “How are you doing . . . honestly?”, as she wrote on my arm.  I asked if she wanted the physical or the mental.  She said both.  She knew from my other blog post, most of what was going on physically, so I didn’t focus much on the physical, but told her I was having a spiritual low.

All my family was coming, even my sister, Megan, from Colorado.  And while the house would be full with everyone, I wouldn’t be there.  My family did take turns coming to visit.  My nephew’s birthday party at the nursing home was a big success.  Although I was not physically feeling well on that day.  I did enjoy some good laughs when my family would write on my arm of what Landon was up to.  It was not until a few days later that the “low” really set in.

I knew it was a nice day and that my family was out enjoying it by showing my brother-in-law places he had never been.  They came in really late that night and I found myself really grumpy!  Because my brother-in-law was leaving, I was sad to see him go.  I enjoyed the rest of the week with Megan, my sister, but that is also when a lot of changes were about to begin.

There are a lot of people who contribute to making my room a cheerful room!  My mom and sister, Marcia, keep it decorated and just recently, Marcia added a picture frame of my favorite photos.  She and mom found old pictures.  When they told me what they were, I could see them in my mind.  They even found one with me as an upcoming senior in high school with my cat, Muffy!  They also included one with me standing in front of ruins in Philippi, Greece.  It was about that same time when I was grumpy, my family was out doing things together.

That morning after breakfast, I thought of my time in Greece.  In my mind, it was like a “coffee date” and I was telling someone about my trip from Philadelphia to Athens and all the details of the days between.  We were starting with Paul’s journey with the early Church, but we saw just about everything else from islands to museums, monasteries to Mycenaean ruins, places where Persians fought battles with the Greeks, tombs and finally the Acropolis.  Our professor read from Acts 19 on Mars Hill.  It was a trip of a lifetime . . . then I thought about other trips I have been on.  All the places and people over the years . . . I have seen a lot!

So, my jealousy and grumpiness suddenly seemed rather silly.  It is not so much that I wasn’t out doing things.  It is just I wasn’t there with my family.  I know our life journeys are different, but as I continue on in my hardships, I am finding my dependency is starting to shift to my family, instead of God.

It was right around when Megan was leaving, that mom came in and said we needed to talk.  Whenever this happens, I know change is about to start.  It is getting harder for aides to transfer me when I use the bathroom.  Although it hasn’t happened yet, for my safety and theirs, a new way of transferring me is about to begin.  At first, I was so upset about this . . . and I guess I still am.  I do not blog much about this subject, but using the bathroom is a nightmare as it is!  I guess I can’t see how this new way will be helpful?  I guess what is upsetting too is that everything physical therapy helped me work on is “down the drain”.  (No pun intended.)  It is not just my right ankle, now it is my whole right side of my body.  My right arm feels like dead weight and when I sleep in my chair, my neck always shifts to the right as the neck muscles cannot hold my head upright anymore.  We seem to have fixed a few of those problems by using a variety of pillows, but still, things are changing.  Sometimes, when I’s praying, I ask for more of God’s peace because there are some days that are just long.  All I want to do is get back in bed.  In Colossians 3:15, Paul writes, “And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.”

When I do pray, I find myself saying “thank you” for different people before I say the needs.  It was also over Landon’s birthday weekend, my sister, Melissa, told me birthday cards were coming in.  Even in the midst of all the changes and days of not feeling well, I’ve been overwhelmed with thankfulness because of all the cards and letters I have already received, as well as the love, support and prayers.  All the fun memories help me to remember that even though my journey is different, and my family cannot always be with me . . . even in my dark-spinning times . . . I can feel God’s presence, because of your daily thoughts and prayers.  That alone brings me peace.

Hebrews 4:14-16

Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession.  For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin.  Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.

Last May, what was meant to be a regular appointment, turned out to be not at all what I expected for my life.  Instead, I was admitted to Children’s Hospital.  The next day I asked the doctor when I would be able to go home.  He said, “We are still working on that.  What I didn’t realize was that they were thinking of different plans.  It was the following day, I was told that I would not be returning home, but that I would be admitted into a nursing home.  As the weeks started to go by, there was one day I was sitting in the wheelchair.  I faced my mom and told her I was tired of living “brave”.  In essence, I think I was telling her that I was tired of change as since January my body had been through a whirlwind of changes.

I remembered once being told that wherever there was a nerve, there could be a tumor.  That is just how this disease works.  Whether the tumor causes a problem or not, the ones that do start the “battle of the mind” game.  When the tumors do start causing a problem, you never know how slow or fast a tumor will grow.  Thinking back, I did enjoy a really great childhood all the way through high school and college years with typical ups and downs of the disease.  I went through pain-spasms and muscle atrophy as this is what happens as the tumors start to squeeze the nerves and the message to the brain is cut off.  It wasn’t until we moved here that things started to go down really fast.  It wasn’t until my full deafness and never recovering from my right eye surgery, when I told Marcia that January that I was opting out of my left eye surgery.  I knew things would change, but I did not realize how fast things would change!  I enjoyed last Spring until I was in Children’s Hospital.  When I first moved into the nursing home, my body was still doing about the “same” as when I left Children’s Hospital.  It did not take very long for more changes to increase rapidly.  I was doing PT and OT and I could still communicate by using a green marker board with a black marker.  All that shifted when I went fully blind and had to stop PT and OT.

Fast forward to today, I am now in full dependency on the aides and nurses.  Although, I no longer go to Children’s Hospital for MRIs and Dr. Appointments.  I know that the tumors are obviously “up to something”.  The whole left side of my face is mostly the problem.  I also get headaches where my left optic nerve is and I cringe every time I get eye drops in that eye.  Even if they are being as a careful as they can.  One touch at the eye will give me the greatest pain.  Now, the top of my mouth and whole left side of my mouth and face is completely numb.  My jaw has even shifted to the right and a lisp has developed and gotten worse.  I often bite my tongue.  I only chew on my right side.  Most of the time, food will get stuck at the top of my mouth when I try to swallow.  I try to get it off the top of my mouth.  Even when I do swallow it, sometimes my throat will reject food and it will come back up or sometimes it just gets stuck and stays there.  I have to take a drink.  When taking a drink, if someone isn’t holding my lips closed on the left to seal them, I cannot get the drink out of the straw.  It doesn’t matter what I’m eating, whether it is grounded or yogurt, or even trying to take my medicines which are crushed and put in  apple sauce or pudding.  This is becoming more of a problem.  From there, you can go down my body where everything from my hands, legs and feet that I had worked so hard to strengthen and keep moving—I feel is lost.  Unless someone is holding my hand to keep my grip on my toothbrush, utensils or paint brush.  I’m at the point where, besides gripping Teddy and somewhat pushing my nurses button, I feel useless.  I’m also at the point, where using the bathroom, I have changed so much that somedays, I find it is so frustrating and humiliating . . . it can put me to tears.

As my physical body fights these changes in the mind, there is also another part of my mind that just “thinks”.  When my mind is not telling my body how to use the bathroom or swallow my food—it’s just “normal” thinking for me.  I can think of many things, but in thinking—it’s hard not to think of what comes next.  Although I am at true and total peace, it doesn’t mean that continuing on won’t bring more pain, frustrations and humiliating times.  But also, as my body continues to weaken and decline, I’m finding that I am now having different thoughts about what may come next.  You see that is the problem of thinking in the “future” for me.  It is like blindness as it leaves me in full dependency of what God has planned for me.  However, now that those thoughts have come and gone through my head, in all honesty, I’m finding that I am not ready to let go.  It was last year, even before, I started to really decline in my health.  I was still at home and wanted to take a nap.  I had just started needing help using the bathroom, so as mom did that and helped me into bed, she left the room.  I started to sniffle, maybe too loud, and mom came back in the room.  I told her I wasn’t ready to let go of seeing my family’s faces or being with them.  And, I think, right now that is what I’m facing (again) even though I cannot see my family’s faces and have forgotten what they look like, except from old pictures in my mind, part of me just wants to be here with them.

Michael W. Smith has a song “Pray for me”.  In the second verse he says, “But I know that through it all, the hardest part of love is letting go, but there is a greater love that holds us, pray for me and I’ll pray for you.”  As I continue my journey, I should remember this that even though I love my family and friends so much, I love God even more . . . because God says He is continually with me.

In you, O Lord, do I take refuge;

    let me never be put to shame!

In your righteousness deliver me and rescue me;

    incline your ear to me, and save me!

Be to me a rock of refuge,

    to which I may continually come;

you have given the command to save me,

       for you are my rock and my fortress.

                                    Psalm 71:1-3

Strong Tower

As sung by Kutless

 

When I wander through the desert

And I’m longing for my home

All my dreams have gone astray

When I’m stranded in the valley

And I’m tired and all alone

It seems like I’ve lost my way

 

Chorus:

I go running to Your mountain

Where Your mercy sets me free

You are my strong tower, shelter over me

Beautiful and mighty everlasting King

You are my strong tower, fortress when I’m weak

Your name is true and holy

And Your face is all I see

 

In the middle of all my darkness

In the midst of all my fear

You’re my refuge and my hope

When the storm of life is raging

And the thunders all I hear

You speak softly to my soul

 

Chorus:

Now I’m running to Your mountain

Where Your mercy sets me free

You are my strong tower, shelter over me

Beautiful and mighty everlasting King

You are my strong tower, fortress when I’m weak

Your name is true and holy

And Your face is all I see

And Your face is all I see

Yeah, Your face is all I see

“Mind Art”

Painted by Mel

February 12, 2016

 

 

I was given a black canvas for a present. I really didn’t’ know what I wanted to paint on it. As the holidays went by, different painting ideas came to mind. One day, Dad told me a verse that said I was a “treasure” to God. Thinking about treasures, that got me thinking about one of my favorite Christian singers, Nancy Honeytree. She wrote a song titled “Diamond in the Rough”.  I related the song to the tough grinding of a rock to reveal a hidden gem on the inside. There is both joy and pain even in the hardships. One day the whole gem will be revealed. On that day, it will be polished and shining like new! One day soon, I will be a polished living stone!

Diamond in the Rough by Nancy Honeytree

Don’t give up no matter what you do

Your God isn’t through with you

Someday you will be a polished living stone

Though now you are a diamond in the rough

Diamond in the rough, Diamond in the rough

During the Fall of my freshman and sophomore years of high school I ran for the cross country team. This also included optional training practices that started at 6:30 am! My sister, Megan, decided to run as well. Being my first sport, I took the summer training practices seriously! I think my momentum actually started in junior high when I would run after school or ride my bike. In the winter time I would go up to the rec room and use the Nordic track. Junior high also had summer marching band practices, camps, mission trips and a whole lot of other activities. By the time the end of my 8^th grade came, I had to decide on whether I wanted to do band or a sport. Looking back, I know it was God’s timing to end band and take private flute lessons in order to run cross country.

When I first started running in the summer practices, I was able to meet upper classmen. We would run the city streets or circle the grass at the park. By the time school started, the rest of the team joined us and we did much of the same running, except added more distance and more back roads. We would run up a steep rocky hill and run back down. We did this in repetition-and if that wasn’t enough, we would travel all the way out of town to Rock Creek where we would run straight up the mountain! In all of the practices my coach always emphasized the importance of not stopping to walk-no matter what! I took this to heart and focused on this along with added endurance in the hard training which really helped me during the races.

I’ll never forget my first race, we ate a big spaghetti dinner the night before at my coach’s house. We traveled to our course which was higher in elevation.  I didn’t understand how races worked. So when we got there we set off to jog the course for a trial run. By the time we came back, we had a few minutes to put on our numbers, stretch and do a few sprints. At the line, our faster runners were placed at the front. I was in good shape, probably the best shape I had been in my entire life, but my stride wasn’t very long. Often times I was the one toward the end or the last place runner. I think I did well in that race as best as I can remember. As the season went on, we ran a lot of courses- a golf course, a football field and up a rocky mountain.  When we hosted a cross country race we had a little combination of them all.

As you can see in looking back it was God’s perfect timing in the events of my life to discover that my ankles turned out when I ran. As I finished the cross country racing season that October (after four years), I also got my braces off my teeth. To celebrate, Mom and I ate Chinese food and then bought some new Christian music CD’s before heading home. Since I was big on music, I had read about Jeremy Camp’s new album, “Stay”. His late wife had battled cancer. Little would I realize that one month later in November 2002 I would be diagnosed with the NF2 disease. It was that album that I played over and over to comfort my heart. In December 2002, I had my first back surgery to remove a large spinal tumor. Thankfully, I was able to walk and travel home on Christmas Eve. That Christmas was different, but very special for me and my family.

You see, I bring this up because as I have said before in another post, I knew this Christmas would be different too. I didn’t know how “different” or how my body would change. I don’t’ think there is any point in describing what has gone wrong and how things have changed from head to toe on me. The weekend before Christmas, I had some intense talks with my mom and dad. I told them that I knew things would get worse with my health, but that I was at peace with it all. It only made me sad to know-that I wouldn’t have much more time with my family and friends. It was very hard emotionally. Mom, Dad and Marcia came to see me after the Christmas Eve service. We sang Christmas carols together. I couldn’t see any decorated trees or brightly lit Christmas lights, but I knew that I was with my family having really special memories. A week later, on New Years Day, I didn’t make new year resolutions. But I thought about cross-country and I applied it to my life. Like the races, I know there is a finish line. However, I don’t know when I’ll cross the finish line. There is a tough point in every race when you really just want to stop and give up running. The big cheers at the start of the race have faded and now you are running alone. But then you start hearing faint cheers ahead and that keeps you going forward to the finish line. I’ve decided that my focus should be to strain on and cross the finish line. As I think of my life “race”, I’m overwhelmed, by everyone who runs the race along side of me—cheering me on and upholding me with their prayers. As this new year continues, I will take it one day at a time-not stopping, knowing that Jesus cheers me on too!

Jeremy Camps “I Still Believe” Song Lyrics

 

“I Still Believe”

Scattered words and empty thoughts

seem to pour from my heart

I’ve never felt so torn before

seems I don’t know where to start

But it’s now that I feel your grace fall like rain

From every fingertip, washing away my pain

I still believe in your faithfulness

I still believe in your truth

I still believe in your holy word

even when I don’t see, I still believe

Though the questions still fog up my mind

with promises I still seem to bear

Even when answers slowly unwind

It’s my heart I see you prepare

But it’s now that I feel your grace fall like rain

From every fingertip, washing away my pain

I still believe in your faithfulness

I still believe in your truth

I still believe in your holy word

even when I don’t see, I still believe

The only place I can go is into your arms

where I throw to you my feeble prayers

In brokenness I can see that this was your will for me

Help me to know you are near

I still believe in your faithfulness

I still believe in your truth

I still believe in your holy word

even when I don’t see, I still believe

My two friends from childhood just visited me last weekend. We did a lot of fun things, like painting our nails, hand scrubs, eating dinner together, or watching football (they watched and kept me updated of all positions and scores by writing letters on my arm) and even met another Santa and Mrs. Claus! They even had elves that took our pictures! We also enjoyed a lot of time talking and catching up on our other friends and obviously catching up on the current news and talked about their families and my family. Since Christmas is just around the corner, we started talking about Christmas songs and other fun memories. And of course, Christmas movies that gave us a lot of laughs.

When I get done saying my prayers and singing a song that I remember, all the Christmas movies will come to mind. Among the many, you have Rudolph the Red Nosed Reindeer, Elf, Veggie Tales: The Toy that Saved Christmas, and the clay animated version of The Little Drummer Boy. Mom would record some off television. When I was younger, I enjoyed Frosty the Snow Man, Winnie the Pooh and Christmas Too, and Peggy Fleming the ice skater and Mickey and Minnie Mouse. Oh, how I enjoyed the ice skating show! They would have the medalist of that year’s Olympics skate to the Christmas songs. Scott Hamilton skating to The Twelve Days of Christmas could not have been skating any better. Then you had the classics: White Christmas, Miracle on 34th Street, It’s a Wonderful Life and A Charlie Brown Christmas. And let’s not forget Jim Henson’s Muppets Christmas movies.

Out of all the Christmas movies I have seen, the Muppets are my favorite. My all time favorite Christmas movie is A Muppet Family Christmas. This includes all the Muppets from the other shows like Sesame Street (which means Elmo was there) to even Fraggle Rocks. This is classic humor. There are so many great scenes and lines as all the characters gather at the farmhouse of Fozzie Bear’s mother for Christmas. This movie often comes to mind because in one of the scenes, the Sesame Street characters are putting on a play Twas the Night Before Christmas for the others. Ernie and Bert are narrating. Ernie says, “Not a creature was stirring, not even a mouse.” Out pops Grover from behind the curtains. He is wearing a hat with mouse ears on his head and is holding an empty bowl with a spoon. Ernie and Bert are staring at him then Grover goes on to explain that he is NOT stirring and note how the hand never touches the spoon. I find this particularly funny because one of my communication objects is a wooden spoon, which tells me when it is time to eat. Because my hands are getting really numb and it is hard to hold things or to even know what some of the other objects are, I could probably hold up the wooden spoon because I can feel it and I am NOT stirring!

The other favorite movie is The Muppets Christmas Carol. Obviously this year is different, so out goes the tradition of watching it with my family on Christmas Eve. I don’t know how the tradition started—maybe it was when I was little I remember going to the Christmas Eve service and hanging around town admiring all the Christmas lights. When we got home we would eat some snacks and watch the movie before singing our favorite Christmas Carols around the Christmas tree before heading off to bed. I will not be going to the Christmas Eve service this year and I cannot even see the lights hanging in my room, but because I can probably quote the movie from start to finish, Christmas eve I will just ask for a snack and then replay the movie in my mind.

Most everyone knows that Ebenezer Scrooge is “bah humbug”, cold hearted and negative with his ways and words. Christmas Eve he goes home and things start to happen. Gonzo narrates and takes the role of Charles Dickens with Rizzo hanging as his sidekick. Scrooge, played by a real man, becomes scared as the doorknocker transforms into the like of Bob Marley, his deceased partner, warning him of the ghost that will soon visit. Scrooge is soon inside having a bite to eat by the fireplace in his best gown and nightcap. This doesn’t stop the ghost of Bob Marley of telling Scrooge of his doom. Just like they are now in chains, he will be too unless he changes his ways. He will be visited by three spirits tonight starting at the stroke of the clock striking one. Scrooge falls asleep, but at 1 a.m. the Spirit of Christmas Past appears. Looking more like a fine doll, she takes Scrooge to his past. He watches himself grow up and goes to the part where he asks for a job. The Muppet, Fozzie Bear, plays the role of Scrooge’s first boss, but now his name is Fozzie Wig. He is now hosting his annual Christmas Eve party. The young Scrooge thinks that Fozzie Wig is overriding his expenses and tells him. Fozzie Wig tells him that it is Christmas time and it is the spirit of generosity. Then they are in Fozzie Wig’s factory and Fozzie Wig wants to make his annual speech. Everyone gets quiet because in pops Animal and yells “QUIET!!” Fozzie Wig makes an announcement that he has to make a speech. He pulls out a piece of paper and seriously he reads . . . “Thank you all and Merry Christmas!” The “Marley” brothers are up in the balcony and give their comment about the speech . . . Fozzie made a great speech . . . let’s dance. Then, you see the Muppet couples and real people start to dance.

I want this to be my Christmas card to you. I used to love sending out oodles of cards to my friends and all my extended family. I am blessed to have people help me write my cards, Facebook messages, emails and phone text for me. From the last post, I said things would be different and just thinking about Christmas cards reminded me of all of you. I wanted to say THANK YOU for all the encouragement, love, prayers, gifts and visits you have given me this past year! I have reflected on my past although I would have never expected to be in a nursing home, I have seen how God has prepared me for this time even with the heartaches, hardships and changes. It was a great year with so many memories. So thank you all from old friends to my new friends to my family and loved ones and those reading this randomly for the first time! Have a Merry Christmas and a Happy New Year!

Different . . . that’s how things are these days! As the fall season ended and the holidays start approaching, I knew that things would be different. But, just how different things would be is something I couldn’t comprehend. Even starting with Thanksgiving typical traditions all seemed to be thrown out the window. But that doesn’t mean that “different” is bad . . . you just have to see things from a different perspective.

It all started the week before Thanksgiving when we were kindly reminded by a resident here that the community dinner was to be held the Monday before Thanksgiving. I asked my Dad why they do this and he said it’s so families could celebrate on their own Thanksgiving Day. This made sense to me. So the week before Thanksgiving, mom picked my outfit and my aide curled my hair getting my fancy for the dinner. Mom joined me that night as all the residents met in the dining hall for a simple turkey, green beans, mashed potatoes and gravy dinner. Even though it wasn’t ‘homemade’ or warm pumpkin pie with a dollop of cool whip, we did end with a big serving of pumpkin pie! Pumpkin pie is delicious no matter how it is served!

Two days later, my sister, Megan, flew in to visit for a week. We enjoyed talking and painting together before the family left for the weekend to visit Melissa, David and baby Landon. I’m really glad they got to visit them, but with no company around I started to get a little bored.

When the family returned, we did more fun activities like a Mary Kay facial and painted nails. The best part was on Wednesday . . . I got to go home! A transport van came while my Hospice aide bundled me up and followed from behind in her car. I enjoyed talking more with my sisters and got to hold my cat, Muffy, on my lap! They said he was purring but I couldn’t feel it, but it was special anyway.

When dinner finally rolled around, my aide helped feed me. Marcia asked if I wanted some mashed potatoes. I quickly declined the mashed and any green beans. Instead, I wanted the corn pudding, stuffing, sweet potato casserole and cranberry sauce . . . and of course, the turkey! There was a little break, and then we had pumpkin pie. Soon after, the transport van came to get me. I did enjoy mom’s homemade pumpkin pie with a couple dollops of cool whip.

When I came back, I was greeted by the aides and nurses giving me my medicines. In my mind, I told myself, “welcome back to reality.” Megan and Dad came so I could say goodbye to Megan, as she was to leave very early the next morning, which was Thanksgiving Day. As I sat waiting for them, I sat and reflected on how much work it was for me to go home. As much as I still want to be at home, I know this is where God wants me to be. In those special times and memories, I remember I have much to be thankful for. Since we celebrated Thanksgiving early, when Thanksgiving day did come, it didn’t really feel like it.

Over the weekend, my sister, Marcia, came to help decorate my room for Christmas! She hung up lights and put up my nativity set. She hung garland, Christmas ornaments and curly ribbon. As she was decorating, we were discussing Christmas memories which I remembered a few fun memories from college days. One year, my roommates and I hung up socks in our dining room. Since I don’t have a stocking at the nursing home, Marcia helped me pick out a festive M&M sock. She hung it above my bed and I make it a point to tell everyone to look at my “stocking”! My favorite though was that she came back after she made a tree out of bows! I can’t see any of this, but just knowing my room is decorated gives the upcoming Christmas season a bit of cheer.

Just like Thanksgiving, traditional Christmas just won’t be the same. Things will still be busy with parties, people visiting, people caroling, but I won’t be there, I won’t be baking Christmas cookies with mom or going Christmas shopping and wrapping presents. I won’t be at the Christmas Eve service or driving around afterward looking at people’s fancy decorated lights on their houses. I won’t be watching Muppet’s Christmas Carol movie on Christmas Eve or enjoying Dad’s delicious French toast that we would enjoy with several cups of coffee. I won’t be listening to Dad reading the Gospel of Luke Chapter 2 Christmas Story, but I did ask Dad to come in and write it on my arm. You see the things are different, since Thanksgiving, my body has changed, but that doesn’t stop the Christmas season from coming. In Dr. Suess’ book The Grinch that stole Christmas, the little Who’s down in Whoville were preparing for Christmas. Very much in the same Christmas ways, they buy presents, wrap them, decorate the tree and stock their refrigerators for the feast. Christmas Eve, we find them all asleep, but only Cindy Lou Who meets the Grinch. In his disguise as Santa, tells her the tree lights need fixing, giving her a glass of water and patting her on the head, he sent her back to bed. Waking up Christmas morning, the Who’s discover the Grinch had taken everything, but they still met and sang together. Why? Because the joy of Christmas Day was there and they welcomed it!

Sitting here in my chair, I feel that my spinning darkness and new tremors and nerve related issues could act somewhat like the Grinch. Then I get cards of encouragement from family and friends, and it gives me HOPE to press on. Then I remember that Christmas time is still coming—this brings back the joy and hope of Christmas. That’s the real reason why I celebrate Christmas because Joy came to the World through God’s only son, Jesus.

 

“Christmastime”

Lyrics by Michael W. Smith

Ring Christmas bells

Ring them loud with the message bringing

Peace on the earth

Tidings of good cheer

Come carolers

Come and join with the angels singing

Joy to the world

Christmas time is here again

Children gather around and listen

You’ll hear the sound

Of angels filling the sky

Telling everyone

Christmas time is here

Ring Christmas bells

Ring them loud with the message bringing

Peace on the earth

Tidings of good cheer

Come carolers

Come and join with the angels singing

Joy to the world

Christmas time is here again

Loved ones close to our hearts

and strangers in lands afar

Together share in the joy

Emmanuel

To tell the world

He has come to dwell

The time is near

With one voice

Let the world rejoice

Christmas time is here

Ring Christmas bells

Ring them loud with the message bringing

Peace on the earth

Tidings of good cheer

Come carolers

Come and join with the angels singing

Joy to the world

Christmas time is here again

Children gather around and listen

You’ll hear the sound

Of angels filling the sky

It’s Christmas time is here again