Press On to Finish Strong

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 8th 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

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“Thank you all, and Merry Christmas!!”

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!

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Different . . . But HOPE Remains

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

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Endless Praise!

IMG_0102

Melinda’s art painted on November 13, 2015.

I can only imagine when that day comes

And I find myself standing in the Son

I can only imagine when all I will do

Is forever, forever worship you

I can only imagine, yeah

I can only imagine

(As sung by Mercyme)

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Grace and Mercy . . . FOREVER!

But, as it is written, “What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him”                     1st Corinthian 2:9

This November 18th, marks thirteen years of being diagnosed with my disease of Neurofibromatosis type 2 (NF2). A lot has happened over the years. If you are to ask me in high school to write a five-paragraph essay on where I see myself in ten years, the farthest thing from my mind would have been saying something like . . . “having multiple blood clots” . . . “running out of treatment options for NF2” . . . “Going deaf and having my vision fail” . . . “or moving into a nursing home”. But, this is where I am and a lot has happened over the years as I just said. Looking back, I see all the changes and how they are perfectly planned in Gods timing. One would think then that I would be used to change. That is not so. Even here, there are always new changes of nurses and aides. Another change is how I am transported from chair to chair. I even have change in how I sit as I now have a new wheelchair. There are always the new medicines, and I cannot say much about newness to the food menu! Then, there is how my body reacts to the food menu. My body is always presenting new challenges. The only thing I can count on being constant is my faith in Jesus Christ. Hebrews 13:8 says, “Jesus Christ is the same yesterday, today and forever.” Forever is something that has been on my mind.

I am finding my biggest pet peeve is not being able to tell the time. I am always asking for the time. I want to know the specific time and not rounded to the half-hour. I am a history fan, so I always love reading about the different time eras and learning how it effects us today. As far as time for me, that is a different story. I never liked being late to church events, band practices, doctor appointments and rarely was I tardy for class. In high school, that took a twist when we sisters started taking responsibilities on getting each other to school and to the buses on time. My senior year was probably the worst. All the schools are centrally located at one end of town. Why they put the middle school on the farthest side across town is beyond me. That year, we had a new bus driver. I could never figure out his schedule. The buses never left at a constant time. I guess my morning habits did not end there.

My freshman year of college, I slept through my alarm a lot. As soon as my alarm was going off, my roommate would throw pillows at me. She was on the tennis team and she had good aim! Things get better after that because a small group of us decided to meet at breakfast at 7:30 a.m., then on to our 8:00 a.m. class.

Once I graduated and started work, I also restarted chemo. The one morning, I accidently slept through my alarm kind of late when I got to work at Target. I thought I would be fired. When the leader came in, she said to quit my crying and put myself to work. She offered me grace and mercy.

Over the years, I received a lot of grace and mercy. I have also given a lot of grace and mercy. It is also called love and forgiveness. The greatest grace and mercy is from God. His love and forgiveness is something that is pardoned because of the free gift of salvation that came when Jesus died on the cross, rose again conquering death. You see, now I sit in blackened days of blindness. I only wear my sunglasses to protect my eyes. Like the darkened days we all were born into a sinful world, the prince of darkness wants nothing more than to keep us in the darkness. It extends to all. There are no cultural boundaries and no favorites. The decision is simply to open your heart and ask God for forgiveness and let Jesus into your life. When this happens, God no longer sees a sinner, but His Son! That is the greatest grace and mercy that one can ever receive.

We say things such as “friends are forever” . . . or, “waiting in line in stores takes forever.” Sometimes, I get frustrated waiting to get transferred. This seems to take forever! This life is only temporal and I believe with my whole heart that when my time on this earth has truly ended, I will enter into “forever”! That is something I cannot fathom. That means that there is not an end. With my longing to be free of this suffering, knowing that one day I will be free is what gives me HOPE. That is why it is so important for me to share this with you. In this life things will be hard. There is always HOPE! This hope is for you, too. You must decide to believe.

2nd Corinthians 4:7-18

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.

Since we have the same spirit of faith according to what has been written, “I believed, and so I spoke,” we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence.  For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

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Hunger!

Dictated to Mom Wednesday, October 28 and typed October 29

I can’t remember the last time I used an alarm clock! It was definitely the time I was home, even before I started using home health care aides. All I remember is that my alarm clock started to get tricky when light sensitivity began to be a problem. As my vibrating deaf alarm clock would go off under my pillow, my eyes were being “blinded” by my flashing lamp and I’d usually end up smacking my alarm clock endless amounts of times until I could find the snooze button! I pretty much ended using my alarm clock when I started home health care. My aide would come in the morning to wake me up in typical “good morning “ fashion. The first thing was to shake me awake then open the curtains! In typical morning grumpiness, I tried very hard to explain “no sunlight until I have my sunglasses on!” by the time we had a good morning and had the routine down, I entered Children’s Hospital and then I transferred here to the nursing home. Now I don’t use alarm clocks, snooze buttons, nor am I “blinded” by sunlight in the mornings. It does take me a bit to get a good routine down. The mornings are my favorite time of day here, for the most part. They seem to go by quickly and the best part is I control my own breakfast menu!

When I first moved in, learning the way things go as far as eating and the times in which to eat were one of my biggest adjustments. Everything is scheduled here. I could no longer eat whenever I wanted to or what I wanted to because that was all set for me. However, I did get a little break at breakfast. Our family considered pancakes, sausage and the farm-style breakfast to be a dinner. We always had a bowl of cereal in the morning. “All I want is a bowl of cereal and a cup of coffee, that’s breakfast!” I soon got tired of Corn Pops and Rice Krispies. I even talked to the nurse about more fiber. She suggested oatmeal for a few days while Mom got me stocked on a few boxes of fiber cereals. At least that was an easy fix! However, it took me a while to figure out that I was being served decaf coffee, instead of regular coffee in the morning. Once we realized this problem, we quickly fixed it. I now have a large can of Folger’s and an assortment of powdered creamers sitting on my shelf next to my cereals. Just take it from my experience, if you’re ever looking for ways to cut the caffeine in your diet quickly, just try that method—DECAF all the way!!

My favorite part about breakfast here is the juice. They always bring me a cup of juice from the dining hall. It was about this time last year in which I was recovering from eye surgery and many stitches in my knee after a fall. Besides OT and PT, I did nothing but have my feet propped up and read on my Nook. One of my favorite books I read was Treasure Island by Robert Louis Stevenson. After I read the book, I realized that Disney’s Treasure Planet is based off the book. As I re-watched the movie, I found it all spectacular. In the movie, Jim Hawkins is off once again getting in trouble while his mom is overwhelmed at breakfast time in the diner that she runs at the end of the port. All these funky looking creatures are eating as she is trying to talk to a family friend who is a dog and all the ladies in the corner. One every so often waves a cup and yells, “Mrs. Hawkins, my juice!!” It’s a good thing most of my aides are somewhat my age or younger because one morning, I thought of this scene and told the aide, laughingly. She had seen the movie, so I didn’t have to explain anything further to her. I stopped talking and just laughed and finished my juice.

Anything past breakfast can make or break the day. Since lunch and supper times are a bit more set it has taken me awhile to figure out how much I like to eat at those times. It still has taken me awhile to figure out what my stomach and intestines like and what they truly reject! With my body constantly changing, it’s now not just my intestines that are a problem. I’ve had lots of discussions with my dad about my chewing and swallowing. I also discovered last night that I now have a lisp! That’s kind of besides the point of eating, but the fact is I’m having a lot of problems just in how I eat my food and even swallowing my water. One night though, I was really disgusted at dinner and when Dad came in that night, I started lamenting about the foods I was missing because a lot of food typical on the “outside world” can and are considered an expense here.

Since the season is changing and November is coming up, I started talking about my envision of a Thanksgiving dinner that I knew I wasn’t going to have here. “Oh, I know we will get mashed potatoes and gravy as we seem to eat that a lot here”. It wasn’t until the next day that I realized I really have nothing to complain about even if some foods make me sick or I find them gross. Also, I feel like a baby that is being fed and always asking for a drink because I cannot do it on my own. But the thing is I am being fed and fresh water is always available to me when there are millions around, not only in America, but also in the world who have nothing to eat or drink. I’ve never know hunger or thirst. Yes, I’ve been thirsty, but even then I get “filled”!

I’ve noticed in my time here, since going blind, how much more that I am spiritually “hungry”. Now that my eyes are darker, they seem dry, almost like the dryness that I sometimes feel in my soul when I am alone. But just when I need it most, God fills those longings with new songs and a few Bible verses I can think of on my own and I can fellowship with Him. Yesterday, I had two people visit me and read me verses from the book of the Gospel of John. I went to bed last night feeling more satisfied as if I had just eaten a piece of banana cake. That is the reason why I continue to trust God, even like the night before when I was in such intense pain thinking it was my last hours. Maybe that is why mornings are my favorites too because there are some mornings I don’t want to get out of bed. The fact that a new day has just begun is something worth praising God for. Now that I cannot see, I always ask if my shade is open and if it is a sunny day!

John 6:35

Jesus said to them, “I am the bread of life; he who comes to Me will not hunger, and he who believes in Me will never thirst.

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“My Somewhats”

Dictated to Mom October 20th, Typed and posted by Dad October 23, 2015.

Sometimes I feel like I’m living here in the twilight zone. I really have no idea what this place looks like, except for a couple of memories. Because I spent a lot of time in my room when I first moved in, I could tell out the layout of the room. I have places where I like to sit. I know if I go out of my room and take a left there is a family lounge area at the end of the hall. I know if I take a right out of my room that takes me to the lobby area. I use to sit at the table in the lobby with my prayer journal or would look out the big windows . . . past that, I can’t tell you the layout of this place, especially the outside. I started learning the layout piece by piece with people who would take me on outings. They would let me touch the holly bushes or tell me when the sidewalk ended and we would turn around. I was also told there were cows in the field behind my room! There is a fountain outside in front of the building. “A fountain!” I exclaimed excitedly. At that point, the image of the sound of music with Maria and the Von Trapp family singing around the large fountain came to mind. “It is really not that big,” Marcia corrected. “Oh!” I exclaimed, but it was too late as the movie scene had come to mind. As I continued on my thought of the Sound of Music, Rolfe tells Liesl his concern for her because she doesn’t understand the outside world. He says he will take care of her because she is alike a “big baby”. She says she is sixteen, and what’s so “baby” about that?! Of course, the next musical score starts on its way, “I’m eleven years Liesl’s elder and sometimes I want to say my age and say what’s so “baby” about that? But the truth is over the past two and a half weeks; I have started to decline and entered into what I call “baby days”.

About two weekends ago, I had the privilege of finally meeting my friend Jess from England! She also has NF2. I was apart of the book she published of people around the world who have NF2 and their stories with the disease. I first met her on line in 2012 and we chatted back and forth. We both have one thing in common. We both really like Anne of Green Gables. We had kept in contact and had tried to meet before, but it had never worked out. I finally did have a little contact with her at the beginning of the year, so when Dad said “Guess who is coming?” she is not the first person I would have guessed was coming. Jess and I had a great weekend! It truly was one of those times that I really cherish! She had gone to Prince Edward Island before visiting me. She described in writing on my arm all that she saw. I envisioned it in my head. That weekend seems like the “top of the mountain” with Jess and family also visiting me. I was never really alone.

Things suddenly changed, as at the end of that next week I seemed to have fallen off the mountain top cliff into the deepest of dark valleys. Literally, almost all my family and extended family went to my cousin’s wedding in Chattanooga, Tennessee. And guess who didn’t go! I was already a crying mess and throwing my hands up in the air as the aides were getting me dressed on Friday morning. I didn’t feel physically well. I also didn’t see any purpose for me for the weekend. I really did struggle too because my eyes went from seeing lightness to being pitch black in an instant. “It’s the black spinning that makes me feel really sick. I was very grateful that a few friends stopped by as chats helped take my mind off of myself. I still had hours by myself—even my sleep was restless. I tried to sing songs and think of people to pray for, but I couldn’t get past my own physical suffering.

I was really troubled and despaired and I heard a voice in my head telling me that I should just “curse God and die”. As I shouted back, “No! I will not!” I asked God how much more I could give that hasn’t already been “taken” from me. Then a list of “somewhats” came to mind:

  • I can “somewhat” chew and swallow my food.
  • I can “somewhat” swallow my pills.
  • I can “somewhat” take a drink without choking.
  • I can “somewhat” move during the transfers.
  • I am “somewhat” not confined to a bed yet.
  • I can “somewhat” hold a toothbrush.
  • I can “somewhat” feel things with my hands.

I started doing better when the family returned from the wedding . . . hearing all of the stories and getting the details of the weekend helped bring some laughs and joy back. I still was struggling inwardly as a lot of my dreams are pointing toward Heaven. My friend came on Friday with peanut butter and jelly sandwiches. It was delicious. As I sat talking with my mouth full, the subject changed to how I was doing. I gave her the typical run down and finished my bite of food. Then I started crying and asked my friend if it was selfish of me to pray for my heavenly healing? I’m still not sure about this question. I know one day I will have a heavenly healing, but is it right for me to plead to God to take me when He still needs me here to help others. Jesus gave everything I continued to say and He trusted Himself to God even though He knows what was ahead. I don’t know what is ahead, but I have truly given Him everything. It may not mean giving Him everything physically, but have I given Him everything in my heart? As my body continues to do down like “a baby’—trust is the one word I’m told all the time. If I have to trust everyone around me for my needs, then I should trust God and His timing.

Since my conversation with my friend, I’ve done a lot more thinking and praying. The songs I sing point toward Heaven, but I do see I have things I need to finish here. I pray that when my final breath has been taken, I will have finished all that God intended me to do.

Isaiah 40: 28-31

Do you not know?

Have you not heard?

The Lord is the everlasting God,

The Creator of the ends of the earth.

He will not grow tired or weary,

And his understanding no one can fathom.

He gives strength to the weary

And increases the power of the weak.

Even youths grow tired and weary,

And young men stumble and fall;

But those who hope in the Lord

Will renew their strength.

They will soar on wings like eagles;

They will run and not grow weary,

They will walk and not be faint.

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