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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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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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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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 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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(Dictated to Mom on September 30th)
Last summer when I participated in the Children’s Tumor Foundation NF2 walk in Cincinnati, OH, I got on the website to register the team name. As I was looking through the other teams, one was named “NF Gets On My Nerves”. Maybe you have to have the disease to find that ironically humorous as I did! I still think it’s funny, but in all reality, my nerves really don’t as since the last blog post, they have taken a lot more pressure from the tumors.
It was just a few days ago that in thinking of this blog post, I really didn’t know what I was going to write. I get tired of telling everyone about my physical woes as if I don’t have anything else to talk about. I know it’s important to share so people are updated and know how to pray for me. My body continues to go down, but sometimes I feel that I’ve already said enough. There are always the physical changes, but over these past few weeks, I’ve experienced a state of mental and spiritual changes in dealing with the new level of nerve functions. At the same time, my body has been battling between the flesh and spirit. One night, as my dad and I were discussing my physical conditions, I found myself getting really frustrated and angry during some of our conversations. As Dad was giving me a hug that night, I suddenly realized that I was doing the same in my prayers and attitude toward God. I don’t think that I’ve ever had such a state of loneliness in my life before to where I was so angry at God I just couldn’t understand why things were happening to me, I’ve never been depressed before, but in some ways the attitude I had could have been so.
A lot of my physical pain now deals with having numbness that has now pretty much taken over all areas of my body. This isn’t really anything new, except for one thing—my breathing. The entanglement of tumors behind my intestine problems is obviously nothing new either as I had this problem for several years now. Over the past few weeks, what has been happening is more tumor pressure in my middle part of my spine. The tumor that is growing on the inside of my spinal cord at the base of my neck is causing pain when I breath. If you look closely, sometimes you can see my head bob because my heart is beating faster. I wonder this is a side effect of the tumor? In all of this, I also am experiencing some general “mishaps” here and there. Once, as I was spilling my capped water mug yet again, I cried out, “What do you want from me? Why am I still here?” I was so frustrated and at such a low that I told Mom that I was “done” and wanted to give up! I’m tired of being “brave” and taking the road less traveled—separated from my friends and family. “It’s not fair”, I cried. I was letting my flesh “win” even though I know I have the victory in Christ!
Often times at night, I wake up between 5:30 and 7:00 a.m. to use the bathroom. When I’m lifted back in bed, I started to fall asleep. Often Audio Adrenaline’s song called This Day comes to mind. The song talks about getting out of bed and starting the day with every breath of God. It’s sad to say that by the time it’s 9 a.m. (and transferring me to my chair)—I have long forgotten the song. I have learned a lot over these past few weeks since the last blog post. Most importantly, I’ve learned how significant every breath of life is—each breath may be full of pain, maybe in a small or big way. I know now that every breath is surely a gift. Some may say it’s a miracle—and maybe it really is. I don’t know, but I do know that as long as I am still breathing that I am here for a reason. That reason sometimes is just to pray to God—I’m still learning this lesson like every brush stroke. I feel the joy of what that breath of praise can really mean. Sometimes I still want to know “why” but I don’t need to ask that question anymore.
Thank you all for your continued prayers and encouragement because it makes my heart overflow with thankfulness. And a thankful heart is a happy heart!
This Day
Sung by Audio Adrenalin on the album Underdog
It’s six A.M
I’m so tired
The alarm sounds
And the new day begins
Before I go
And disturb this peaceful moment
I look to You
[CHORUS:]
I want to say a prayer
Before my feet can hit the ground
Lord I give this day to You
I’m amazed how You forgive me
Yesterday seems so far behind
It’s a brand new day
And every day’s a new beginning
I look to You
[CHORUS]
Breathe in
Breathe out
Breathe in
And watch the day begin
I wanna watch the day begin
[REPEAT CHORUS]
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Dictated to mom on September 13, 2015.
Back in March when social media communication became difficult, Children’s Hospital set me up for an appointment at the occupational therapy. When we went to the appointment, we took all my technology devices that I was having trouble using, like my laptop, because I was finger poking. We took my Nook and phone and my magnifying glass—and by this time, I was needing a different colored background as white hurt my eyes. A lot of my appointment was my parents talking with the therapist. I did try out a raised keyboard. Sadly, my needs were too far advanced for them to help me. I did at one time get excited that I might try a voice recognition on the computer. I started speaking in the microphone, but what I didn’t know was that it was a bell! A BELL?! Yes, a bell—so if I needed help, I could ring the bell and someone could come to assist me. I thought this was funny because I was already yelling, “Hey, Mom!” At this point I had home health workers to help me.
It reminded me of a Calvin and Hobbes cartoon strip . . . Calvin is always trying to stay home from school, he finally succeeds because he really does get sick. In the strip as I remember, Calvin is in bed munching on a piece of toast. In his mind he is thinking, this is good, I want some more. In the second box of the comic strip, the toast is gone and Calvin’s mouth wide open yelling, “ROOM SERVICE!” In the last box, Calvin is smiling at this mom—he says, “That was quick!” His mom’s replied, “You are going to school tomorrow!” Now that I am here, I remember this cartoon strip as yet again my body has changed for the worse over the past weeks. I know I’m not the only one here at the nursing home that needs help, but now that my body requires more care, I’m finding that my nurse-call button is nothing like what I got at home. One of the main reasons why I don’t have peace about sitting all day in the wheelchair is what the tumor pressure on my spine does to my bowels, not being able to get up and use the bathroom when I need it or for how long I need it, is something that really bothers me. Although there have been some good changes, in the evening I am helped out of bed to use the bathroom. It is still the number one reason in which I can forget all the fruits of the spirit and be really rude . . . this bothers me too.
There are a lot of other changes that go along with the others. I’m having more pain spasms, headaches, incidents feeling of my head spinning, more incidents of choking, more numbness in the upper spine, and the hardest of all is weakness in my right ankle and complete numbness in the right hand and arm. Physical therapy is working with me on transfers from the wheelchair to the bathroom on the right side. My left side has always been my stronger side—strange because I’m right-handed. One of my strengthening exercises is to stand between two parallel bars. As I grasp the bars, PT works me by shifting my weight to the right. This is hard because not only can I not feel the bar with my right hand, but I also try to tell myself I’m not spinning, but actually standing still.
Now that the fall season is here, school has started and the football season is beginning. When my roommate Tasha visited a few weeks ago, we were talking about a lot of memories. One of my favorites was going to church with her on Sundays. We would came back and make some kind of hamburger helper—watched hours of football in the living room. Now that I can no longer watch football, I sometimes watch football movies in my head! My favorite is, “Remember the Titans.” At therapy, I remember a theme during one of my exercise therapies. They are up the fourth try on a play until they get things right. Finally, one evening, a play is perfectly done! Team Captain Gary in excitement smacks his partner Julius on his shoulder pad and yells, “Left side!” Send it first—Julius then returns a smack and yells, “Strong side!” As they begin yelling, the team sees it’s possible to come together. The rest is true history! So at therapy, as I’m trying to focus to shifting to the right, I want to start chanting this, but I didn’t because I know I would start laughing. I ended up having to sit down anyway. I told my therapist what I was thinking. Sometimes they probably wonder where I get this stuff from, but it makes sense to me. J
The thing is, after my standing or walking blindly in the spinning whiteness guided by my therapist—it’s those first few moments of sitting back down . . . being still . . . and just breathing that I appreciate the wheelchair. Those moments are short lived. Seven years ago, when I told God I would be okay living in a wheelchair, I didn’t think I realized what that truly meant. This is where I’m struggling because the more that my body goes down, the more I have to trust. The more I have to be still and know God. I realize I’m not ready to be still yet . . . this is where I am praying for peace.
John 14:1 “Don’t let your hearts be troubled. Trust in God, and trust also in me.”
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Dictated to Dad on September 2nd.
“Hope Rising in the Storm”
“Jazz”
“Every Season”
“Sunset”
“Mums in a Basket”
“Consider the Lilies”
In the mystery case called Mel’s life with NF2, I could imagine a big file with a huge stamp on the front cover with big red-letter words that reads “IMPOSSIBLE”. I don’t think it is impossible to understand this disease, but I live in a body full of impossibilities with my disease, or so I thought.
In December, I first started going colorblind. By January, I told a friend I thought the days of painting would soon be over, but I still kept painting even though the color was starting to diminish and the bright lights in the basement were more of a distraction. I found painting more of a frustration than a joy. I started inviting people over for painting parties. By the end of March, I stopped painting in the basement completely. I tried to do a few watercolors, and soon I stopped that as well.
It was not until Mother’s Day weekend when I was in Children’s Hospital that I painted. My social worker graciously bought me a big board and big tubes of primary colors. At this time, I could only see blue, then occasional red and yellow. The literal hands-on activity brought joy to me that weekend. Even then, I never thought I would go completely blind or that I would actually ever paint again in the normal fashion. The weekend my friend Calli visited in June, I was only seeing shadow figures and attempting to read the black letters printed largely on a marker board. That first day, Calli told me her mom had asked for a painting. I thought this was special. That night, I thought of the different colors and a picture in my mind of what I wanted to paint. The next day, Calli brought the last of my boards along with some paint and brushes. This painting changed everything.
The way I now live in my body, there are very few times I can forget everything. One of these times is when I paint. I forget it all! There is no more spinning, thoughts of how it is hard to breath, pain spasms—there is none of this! In the moments I am painting, all I feel is JOY! I usually have a BIG smile on my face. As my arms and hands start to get covered in paint, I start to see that even in impossibilities that God still makes things possible.
You no longer see Mel’s painting, but a reflection of the painting that is in my mind’s eye. In my state of total blindness, it is there I see full color and full detail. Whether or not the painting is exactly what is in my mind . . . that is the mystery! Like all things there is a time and a place for everything. Soon, the colorful pictures start to fade, but I reflect on the Fruit of the Spirit and what brings me joy. Painting, and sharing the gift I have been blessed with as I sit in spinning whiteness brings me joy.
Starting to paint again gives me with hope that God will give me more pictures and I will continue to reflect what God has done for me.
“Do They See Jesus In Me?”
Lyrics by Joy Williams
Is the face that I see in the mirror the one I want others to see?
Do I show in the way that I walk in my life the love that you’ve given to me?
My hearts desires is to be like you in all that I do all that I am.
Do they see Jesus in me?
Do they recognize your face?
Do I communicate your love and your grace?
Do I reflect who you are in the way I choose to be,
Do they see Jesus, Jesus in me?
Well it’s amazing that you’d ever use me, but use me the way you will.
Help me to hold out a heart of compassion and grace; a heart that your spirit fills.
May I show forgiveness and mercy the same way you’ve shown it to me?
Do they see Jesus in me?
Do they recognize your face?
Do I communicate your love and your Grace?
Do I reflect who you are in the way I choose to be
Do they see Jesus, Jesus in me?
Well I wanna show all the world,
That you are the reason I live and breathe.
So you’ll be the one that they see,
When they see me.
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Dictated to a friend on August 18, 2015
I am finding that there are a lot of things that I am forgetting. Growing up, Mom had a notepad with Winnie the Pooh sitting on an empty honey jar with one paw extended across his red shirt and with the other paw on his head. The caption said, “Sometimes when I think, I forget.” Typical cuteness of Winnie The Pooh, but I’m finding it’s somewhat true for myself. I can’t remember what it’s like to get out of bed by myself, use the bathroom by myself, or even brush my teeth standing up at the sink. I can’t remember what it’s like to take a normal shower, look in the mirror, or do my makeup or even get dressed by myself. I also can’t remember what it’s like to eat normal, let alone see my food. I can’t remember what it’s like to take a drink without using a straw, or even what it’s like just to stand on my own two feet without holding onto something or having my PT have her arm around me as we walk the hall. My brain is forgetting a lot of things, and sometimes in my sadness I start to think even deeper about things that I can’t do anymore, like make my bed or do the dishes or even hold a pen and write a normal letter. I also think about the places that I can never go and see anymore, especially with the people like friends and family, and above all, I’m forgetting color.
It was during one of these times that my thinking was also in a state of extreme boredom. You would not believe some of the things that I think of. I try to keep my mind focused on friends and family and pray for their current needs that I am aware of, but there are some days when that plan is out the window. I can start to think of all the things that I want to see, so I go on driving tours in my head. I’ll go around town, go back to the house, I can still see Muffy in my mom’s garden, and some of the other places around that I’ve been to. Somewhere around the way I’ll end up back in Denver. Maybe with school starting I’ve been thinking a lot about CCU and the apartments that I lived in afterwards, the Target where I worked at at the mall, and some of the adventures that I had with my lady friend in Littleton. Then I’ll end up back in Monte Vista and go through all the things there where we grew up seeing different things such as my favorite mining town in the mountains.
It was in one of these driving tours that all of a sudden my mind just kept going! The more that I sat thinking, the more I traveled the states and realized how much I already have done. Places I have gone and people I have seen before my time here. I even went on a Make-A-Wish cruise and went to Greece! I’ve seen and experienced a lot of things, and I told my mom that the more I realized what I will no longer see, I can be thankful for what I have seen in the past. That doesn’t mean to say that boredom doesn’t still hit: just the other day I waited until late evening for my family and relatives to come visit. I was so bored I actually went through all the Narnia movies in my mind from start to finish. Then I wrote all my e-mails that have been waiting to be written and even made up a short story just for the fun of it. There were some things, though, that make me sad. I’ll never see my little nephew as he grows up, or the other boys that I’m “Auntie Mel” to. I’m also having a hard time seeing [in my mind] people’s faces in general, and I am finding the more that I force myself to try to see their faces from old pictures [from memory] from my prayer journal, the more I’m forgetting. It might seem strange to pray for things such as seeing people or even color. I pray for my needs and it’s not that I need to see it or that I necessarily have to, but I know that God is slowly answering that prayer. I’ve seen some faces in my dreams and color comes here and there. Since I have been seeing white for so long, when I see color I get really excited and I know that I may not ever see full color here on earth, but when I do see color, I anticipate it to be the most beautiful thing ever seen. For now, I will try not to focus on the things forgotten, but remember the goodness lived and still the many memories yet to come.
Verse one of Testify To Love by Avalon
All the colors of the rainbow
All the voices of the wind
Every dream that reaches out
That reaches out to find where love begins
Every word of every story
Every star in every sky
Every corner of creation
Lives to testify
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Dictated to a friend on August 18, 2015
Two weekends ago, I started to experience change in my body which is now probably something that’s gonna be more of a normal situation. My evening bed pans keep me going every hour and are somewhat of a nightmare. When I get out for the morning, and get in my wheelchair, I can’t tell you if the day is gonna be a good one for my intestines where I actually feel normal, or if it’s gonna be one in which all day I feel extremely sick. On this particular weekend, I was having quite the time. I was all by myself, as Mom and Dad had gone to Cleveland for a fun weekend of being just grandparents and my sister, otherwise, was at work. Friday wasn’t too bad, but it was Saturday that really got me down. I was so hot and stuck in my room with nothing to do. I don’t have any OT or PT on Saturdays, so the only thing for exercise that I was getting was the up and downs to the potty chair and I requested some help getting the playdough on the table so I can do something with my hands. The thing is, I was having a hard time with how long it was taking just to get transferred to use the bathroom and the lack of the communication objects. By the end of the night, I was so frustrated, I was really cranky. It didn’t help any that earlier that day I had spilt my morning coffee with my medicine two times, and then I blurted out that I had stupid hands. In my prayers otherwise that day, I sort of vented to God and told Him that I still thought it was unfair that I had had to sit alone in whiteness while everyone else was enjoying the day.
It was only a few days before Mom and Dad left for Cleveland that I was doing some self check on myself and my attitude using the fruits of the Spirit. I knew that patience was one of the big ones that I could be working on, because as much as my body is changing, so are things around here with people leaving with new jobs and new aides coming in. It can get really frustrating to always have to express my needs, but that is where part of the communication comes in. I had also been thinking about the verse that Paul writes in Philippians 4:8, about whatever is true, noble, right and true, and of good report and how I should think on these things. I had already told Mom that my intestines were becoming somewhat of an obsession in my mind, and I felt bad when they came in that right from the start of the conversation I would explain my new woes and the little time to listen to their day. I wanted to change this. So on Sunday night when Mom and Dad came back from Cleveland, I was still having a really hard time with the timingness of bathroom and communication objects. But instead of telling my woes first, I decided not to say anything. I enjoyed hearing about their time with my nephew, Landon, and laughter brightened my spirit. When Mom did ask how my weekend went, I was honest but kept it short. Monday seemed to go a little better, but again by evening I was having a really hard time. Even though I was really late in the evening, I had the nurse call my dad to come in so I could talk to him. Through his wisdom and guidance, over the next few days I talked with some head nurses about the timing of the bathroom, some sanitary issues and the use of my communication objects. I was also able to talk very kindly with some of the new aides, and things have been going much better. The thing I’m noticing is that it will never be perfect around here. As hard as everyone tries, my body is just going to clash; I can’t explain the changes of why I freak out sometimes because of the way I spin, even though I am sitting still. I can’t explain why one day I eat fine, then the next day have to tell myself how to swallow even mashed potatoes. And the one I really can’t explain is my intestines, but I think that’s all part of the new normal.
However, it’s through these things that I am seeing that there is a lot of grace and mercy extended towards me. Even in the toughest days, I still don’t understand why these people like to clean up after me and all my messes. There’s also been a lot of unexpected surprises. Mom came once with a Subway sandwich with an avocado: it was so delicious. Another day, a lady from the dining hall got me a caramel iced coffee from McDonald’s. After that, an aide stayed extra long one night just to help me with my shower. The next day she helped again, just to help me get in bed. There are other ones where after I feel sick after lunch, they’ll still help me with brushing my teeth, putting lotion on my face, and popping in two pieces of gum the way I like it before they leave. And just today, a nurse told me she brought me more coffee because they know in the morning I need a solid cup. All this kindness has helped me to see that shaking my attitude with the fruits is really something that’s important no matter how hard the days may get. Because even when I’m apologizing for my crankies, it helps lift my spirit. I also see through these experiences of kindness extended to me that the greatest grace and mercy has already been extended to me as well. Jesus did everything just to be with me and I still will never understand why He came down to earth just to love people in their sins and then die for them so that that way one day we could be with Him forever. It is only because He lives that my heart, although it is becoming beating faster, because of changes in my body and medicines, that I am still breathing, too.
Spoken For by Mercy Me
Take this world from me
I don’t need it anymore
I am finally free
My heart is spoken for
Oh and I praise You
Oh and I worship You
Covered by Your love divine
Child of the risen Lord
To hear You say, “This one’s mine”
My heart is spoken for
Now I have a peace
I’ve never known before
I find myself complete
My heart is spoken for
Oh and I praise You
Oh and I worship You
Covered by Your love divine
Child of the risen Lord
To hear You say, “This one’s mine”
My heart is spoken for
By the power of the cross
You’ve taken what was lost
And made it fully Yours
And I have been redeemed
By You who spoke to me
Now I am spoken for
Covered by Your love divine
Child of the risen Lord
To hear You say, “This one’s mine”
My heart is spoken for, yeah
Covered by Your love divine
Child of the risen Lord
To hear You say, “This one’s mine”
My heart is spoken for
Take this world from me
I don’t need it anymore
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Dictated to Mom on July 27th, 2015
I worked for three summers during my time home between college semesters at the local flower shop in town. The first summer, I started out as a delivery girl, helped maintain order in the shop and cleaned lots of flower buckets. Also, I successfully learned how to tie a balloon – thanks to my Dad who showed me how to do it. I was like a kid learning how to tie a shoe, but I wasn’t very successful inflating the balloons. Over the next two summers, I gained more responsibilities. I made fewer deliveries and did more to maintain of the store. I learned how to make some flower arrangements for the display case, cleaned the buckets and ran the cash register. My hearing had already gone down, I couldn’t answer the telephone, but I took orders when people came in as I was able to read lips fluently, and helped them fill out their cards to go along with the arrangements. We changed the cards to match the different holidays, but there was one that we always kept out. It was titled “Just Because”.
Over the past weekend, we had a really hard time. I was all by myself and I seemed to have hit another low. At the end of Saturday night, I thought of “Just Because”. As I got into bed that night, I tried to look at things a little differently. If you want to hear it straight out, I‘ll tell you . . . I’ve been a bit frustrated . . . I’m sick of bed pans . . . I’m sick of my eye feeling numb . . . I’m sick of having a hard time chewing and swallowing . . . and even now have been starting to choke on water. Over the past week, my hands and feet, have increased numbness. I won’t even begin to describe the problems with my intestines. I guess the biggest annoyance right now is when I eat, I get food all over my face and my bib. I guess all in all, I’m tired of feeling like a kid.
On Saturday, as I sat crying into Teddy, I started thinking about being home with the way things used to be. When walking had become more difficult, Dad and Mom would help me down the garage stairs into the car. Dad would often hold my left arm and Mom would hold onto my right arm . . . much like parents helping their toddler with their first steps. It never bugged me because they were my parents, but facing it here in the nursing home is a little different.
Jesus told his disciples and the multitudes of people to “have faith like a child.” On Saturday, as I cried to God, I did feel like a child because I told him once again that I didn’t think it was “fair”.
I’m still trying to see that even in this “routine-ness” of how I now live, that my life still has worth. One of my favorite hymns is called “Because He Lives” I sing it almost everyday. On Saturday night, it came back to mind. I can get so frustrated at just the stillness and stiffness of the day when I get into bed. I wake up the next morning and grumble, “Here we go again!” But like the hymn says, “Life is worth the living, just because HE LIVES!”
The next day on that Sunday, I did wake up and things were different. It was probably just more of my attitude, but I am still trying to have that simple faith of a child.
God sent His son, they called Him, Jesus;
He came to love, heal and forgive;
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives!
Chorus:
Because He lives, I can face tomorrow,
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!
How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He Lives!
Chorus
And then one day, I’ll cross the river,
I’ll fight life’s final war with pain;
And then, as death gives way to vict’ry,
I’ll see the lights of glory and I’ll know He lives!
Chorus
Lyrics by Bill Gaither
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My Life with NF2 