Category Archives: Muffy

October 16, 2014 · 9:58 pm

“What are your needs?”

I don’t know why or when I started this,, but somewhere along the spring days into summer, I started greeting Muffy with the question, “What are your needs?” Depending on the time of day or weather conditions or my own jolly (or not) attitude, my question is the same and I usually know what his needs are–food, being pet, or wanting inside. He sits at the back patio steps and when you walk past, he glances at the door knob, as if hoping it magically opens the door when we do not follow through with his requests of a cute “meow” gesture. Muffy is easy to lip-read.

At first, the question was just a funny randomness my family listened to me say, probably more times than their wanting in a day. They still hear, “Good grief,” or an occasional, “Epic fail!” My new favorite is quite studious, “Ludicrous!” Then in utter frustration, I laugh. Muffy’s question is now somewhat a joke on me. Not that we say it as a joke, but it makes the frustrating moments more at ease with a smile, if even just for the moment. Where Muffy’s needs are obvious, mine are not–and I still have a hard time communicating them.

“Thus disease is helping me be assertive,” I tell Marcia in our conversation this morning. I said it in a victory chant fashion, and when I looked across the table, Marcia’s facial expression said it all: no. I quickly added, “I am learning.” That sounded more accurate. I am not an assertive person; it conflicts with my personality. Even trying my hardest, I rank high in the daily needs. As my head reads the not-yet-asked-for-help needs list, I stand with hand clenched to the walker and do a “I hate being so needy!” dance…just bopping up and down as if doing PT exercises. Becoming dependent is where Satan is using my personality against me as I learn to let go of myself. I don’t like being assertive, because I don’t want to be bossy or offend. I like to help, not feel like a needy burden. Guilt is my number one enemy in this disease.

As I learn to speak my needs, I find myself in thoughts of how I can meet the needs for others. “Meeting needs” is like the phrase, “having a job.” I think in physical, tangible terms…probably because those are my needs. When I had to end my working days at Target, I struggled with not having “a job.” My personality and self-conscience was afraid of what other people would think– I didn’t want to just be one of those “unemployed, twenty-something-aged kid” loving at home. I see now the pride in that and I have been completely humbled in living at home; the sacrifices made by my family to met my needs can be more than a job for them. Yet they never complain…even when it is not the best of situations.

I believe God made us needy. We need each other and most importantly, we need Him. God desires for me to be close to Him, telling Him my needs and He listens–yet, even as I speak, I must be still and listen. God always meets my needs, even if I don’t ask or often in better ways than I would have imagined; a parallel…I see this in how my physical needs are met through others. As I verbally share my needs, I must work harder at being still–“listening” with my heart to respond–in hopes that God can somehow meet an unseen need in their life through me, just being me.

Salt and Light by Amy Grant and Wes King

 

We all need a little salt, need a little light

Need a hopeful word, shining bright–

We can be a little salt, be a little light

In this darkened world,

We can shine, oh oh, shine so bright

Shine, oh oh, just like the starlight,

Shine, oh oh, shine

Shine, oh oh, shine…the light.

Leave a comment

Filed under Adjusting to NF2, Funny Stories, Muffy, Uncategorized

September 4, 2014 · 10:54 pm

My Story

“Show off,” I sputter being very much out-of-breath. “Just because you can prance up the stairs…” I add with a laugh and having then completed all six stairs leading back to to main patio deck, I see Muffy flop down next to the picnic table. My whole physical being was shouting unanimously the same: SIT! But I still had two more stairs to climb to enter the house.

DSCN3727

DSCN3722

We had just been out by Mom’s garden taking pictures. I have been eyeing her growing flowers for quite sometime. The Zinnias from the kitchen window are like colored dots upon the green, but it is the sunflowers that I find most captivating. Although it is only a short distance from the back patio to the garden, it was my first time there all summer. It was my first time, because of the barrier between…the grass.

DSCN3750

Grass. I am not even sure why, but it is the biggest struggle for my body; talk about a serious case of painstiffy! But it was worth every moment, every bump in the grass, every nudge of love from Muffy, every laugh with my parents.

I’ve been having thoughts of life in a different perspective. Like a story. Dad and I were returning from Cleveland and I found myself gazing out the window to the biggest sunset that I have seen in a long time. Even wearing my sunglasses, I could see beautiful. As I started thinking, I told myself that if God knows my story, then it must be something good, because I can’t see it ending as a tragedy. Just simple faith talk to myself…then I return home to walk “the grass” of reality, find myself pleading for help and receiving grace and mercy in the time of need (Hebrews 4:16.)

DSCN3736

 

 

DSCN3735

My story is still being written, everyday that I live…

*My Mom shared this song with me. “Glorious Unfolding” by Steven Curtis Chapman. http://www.youtube.com/watch?v=Id2u3osFcp8

5 Comments

Filed under Muffy, Uncategorized

May 9, 2014 · 11:23 pm

I was Needed

This probably will sound absurd. It probably is. However, this morning I was needed. It wasn’t anything urgent and could have waited (I suppose), but at the moment, I decided to take action myself. I wanted to be depended upon. I needed, for myself, the reverse psychology thinking–being the giver..instead of the dependent. One small gesture gratified this. This is Muffy. He’s my cat. He’ll be ten (in human years) this Fall and has used four of his “nine lives.” He’s pretty special. When we lived in Colorado, all our cats were outside cats, making their home in the back of the barn. I never saw any mice! When we moved, Muff and his brother cat, Tux, had to do major adjusting as we had no barn. We tried purchasing a small dog house and placed it on the patio. It wasn’t appreciated at first (although Muff finally started using it, but prefers the cushioned lawn chairs.) As for Tux, he discovered the shed across the street. I always thought it funny as I referenced them in parallel to the personalities of Jacob and Esau (Genesis 25), because they certainly acted like it.

Now that it is just Muffy in our family, he has had to make more adjustments. He still loves the outdoors and when the grass grew so tall at the unoccupied neighbor’s house–Muffy was living in a jungle dream. I now have seen many, many mice (more left-over version, sad to say.) The Winter months were harsh, so he spent a lot of time indoors; in the summer, sometimes he comes in on extremely warm/humid days. Outside, he claims one specific patio chair that we placed a green blanket on like a basket-shape. Inside, he now claims my bed; or his newest fancy–the “underworld” between my mattress and the floor.

Taking care of Muff used to be a cinch. Now, I not only depend on my family to help with my own needs, but also taking care of Muffy…even something as simple as placing his food dish out on the patio. And that is where my morning story takes place:

Muffy has now, too, discovered the coolness (in literal terms) of the shed across the street, so it was no surprise to me that he didn’t come when I called his name out the screen door with a short, “Here kitty, kitty.” I ate my own breakfast and when I decided upon a piece of toast, my eye caught a whiff of black on my turn to the pantry. “Hi, Muffy!” The main door being closed, he somehow sensed my talking to him, because he started the “cat dance”: tail swishing, head twisting, rubbing his nose against the screen door. “Are you hungry?” My obvious inquiry is answered with another cat dance.

I push my walker to the laundry room and get a dish of food. I had noticed Marcia’s hallway light to her upstairs bedroom was on, as well as the basement. Figuring that she was awake and in either one of those two places (she was gone–unknown to me), I text her and ask if she can help get Muffy’s food to the patio. As I wait for a reply, Muffy’s cat dances are getting pathetically cuter and I just decide–“I’m going to do this! (somehow)” Even though it is only two steps down, there is only a side handle, so logically, it is not safe for me to try to hold the food dish and screen door open with one hand and try to backhand grab the handle–it is complicated and doesn’t work…I already tried it numerous ways.

To avoid a Lifeline escapade, I open the door and stick my right foot out to avoid Muffy running inside. He just rubs his head against your foot regardless. I quickly set the dish on the first step just out of reach for the closing door line. Muffy is thrilled and starts munching away on his bland, dry breakfast food. I close the door and smiled. I just fed my cat his breakfast. 🙂

I often forget that God desires to be the Giver. He gives, even when I don’t ask, and I take the blessings for granted. He gives because He Loves. When I receive that blessing and share it with others, God too receives the glory.

Therefore the LORD waits to be gracious to you, and therefore he exalts himself to show mercy to you. For the LORD is a God of justice; blessed are all those who wait for him.

Isaiah 30:18, ESV

3 Comments

Filed under Adjusting to NF2, Family Times, Funny Stories, Muffy

Tagged as , , , , ,

March 11, 2014 · 11:59 pm

When You Give

In the second grade, I was in Mrs. Brumfield’s class. There are a few special memories I think of when remembering Mrs. Brumfield and her class: She always wore bright red lipstick and because she used my personal book, Abel’s Island, to read to the class for our afternoon reading time, I have a smudge of that red lipstick in the front cover of my book. It still remains one of my favorite children novels. Our circular building held classrooms divided like a pie and our door faced the playground–I especially liked the monkey bars, so much that I gave my palms blisters; but once my name was written on the chalkboard and I had to stay in from recess.

Mrs. Brumfield’s favorite type of animals were pigs. We even made “pigs” using pantyhose stuffed with pillow cotton and after we tied off the curly tail, we hot-glued on felt ears and sewed buttons for the eyes. My pig has pink ears and purple buttoned eyes…and it is in my special box. On our birthday, we got to make a chart using pictures from home to tell the class a bit about our favorite things and about our family. A family member was invited to attend and sit with us up front, but because neither mom nor dad could attend mine, Mrs. Brumfield allowed my best friend at the time, Stephanie, to sit with me.

At the end of the day, there were two dismissal bells for the bus shifts. Because I left on the second bell, this allowed me ten extra minutes of reading time…as we always ended the day with quiet reading in our own “corners or desks areas.” Being a book nerd from an early age, I took this time seriously and never wanted to leave class at the second bell if I was in mid-sentence. And Mrs. Brumfield gave us a take home assignment, but it was “fun” homework: when it was our turn, we took home a large Ziplock bag containing a book, entry log, and a stuffed animal of a mouse in overalls holding by Velcro–a chocolate chip cookie. Our assignment was to log our different activities of what we did with our new pal. Mom tried to find a few educational activities. 🙂 The hardest part was keeping track of the cookie! The book:

if_you_give_a_mouse_cookie

If you have read either this book or the other, If You Give a Moose a Muffin, the overall concept of the story is the same: you give and they keep asking for more–eventually circulating back around to what was initially given.

Recently, my parents went on an extended weekend vacation back to Colorado. It was not initially the reason why we set the Lifeline for use, but it was planned to have that established before their trip for safety reasons. My weekend was not much different from others. I had a few appointments already set, tasks I needed to accomplish and had some sister chat times. I carried out my days like usual routine–my own breakfasts and lunches. Several ladies from my parent’s Sunday school class signed up to deliver hot meals for my dinners. I cannot tell you how much that was appreciated!! A few ladies contacted me just to see how I was doing and if I needed anything. Genuine kindness.

Mom did ask a girl from town around my age to come in the evenings to spend the night (mainly for my Lifeline factor), but also to help take out trash, clean Muffy’s kitty litter, help with dishes and anything else I might need. We decided this was best in their absence–she came in around 10pm and left in the mid-mornings for her other duties and jobs. It worked nicely and since the Olympics were still being covered in Primetime, I usually was in the basement at the end of the day relaxing and working on a friend’s late Christmas present while watching the Games.

I really cherished the weekend, but also saw how much I possibly take for granted within my family all the extra help they give so selflessly. Miriam would ask if I needed help with anything else before going to bed herself and unless it was something I just couldn’t do, like unbutton my new sweater so I could wear it the next day, I didn’t initially ask for much assistance. Maybe it was embarrassment, maybe pride. Maybe I am used to my family seeing me struggle, like when I try to pick up medicines that have fallen to the floor, and they just come to the rescue without my asking. Or often, maybe I am just tired of asking for people to give their time and help–as I turn more dependent, I am becoming stubborn and wanting to still do things on my own. How do I balance between the two? It is something I am still in process of learning.

Continue reading →

3 Comments

Filed under Adjusting to NF2, Family Times, Muffy, Uncategorized

Tagged as , , , , , , ,

November 26, 2013 · 10:46 am

From the Inside Out

I was really tempted this morning to come in the kitchen singing a Christmas song or two…after all, I am cozy warm in my extra-large sweatshirt, featuring the Grinch putting the antler on his dog Max.

GrinchAndDoghttp://lh4.ggpht.com/

And we got a blanket of snow last night. Not much, but it covers the ground and the way I figure, it will linger as the temperatures show no sign of much warmth and the sun is nowhere to be found. Snow–just in time for the Thanksgiving holiday travels. It always seems to happen that way. Maybe it is coming from living in Colorado for most of my life, but I would rather have a grey day with snow over just a dull day (though I love rain too.) Snow brightens the grey….have you ever noticed this? It is like nature’s fluorescent lights to the darkness; It is beautiful.

I sit here at the kitchen table, coffee freshly brewed (no grinds today!) and gaze out the kitchen windows towards the trees at the end of the farmer’s property. The bald branches that normally go un-noticed after the leaves fall are now outlined with bold white streaks that reveal how far they stretch. Just a few minutes ago, there were birds bouncing around on the end of the patio–another sign to me that winter is nearing…time to get bird seed! I look forward to watching them take shelter in the butterfly bush outside my window.

I am not sure what these little birds were doing today, but in my mind I thought, “They should be safe,” as I see Muffy sitting in his patio chair on his warm green blanket with his paws tucked in tight under his winter-coated furry belly. I had just fed him anyway. No sooner as I think this, I see a dash of black race across the snow-coated patio; then three birds flutter off in the sky. Snow doesn’t give much camouflage coverage for Muffy’s black fur. I think he felt defeated; he turned around and retraced his tracks in the paw prints he had just made during his dash. In his pathetic cuteness, I couldn’t help but smile at the morning action. He is now back inside his little house, where no doubt it is warm on the inside.

As much as I love different aspects of the winter months, there are others that I am not so fond of–mostly the early darkness, ice and the way my hands quit functioning when they are blistering cold. I would rather view winter from the inside out–where it is light and warm. My morning readings this past week have been through parts of the Old Testament: King Saul, David and Solomon, the Chronicles of the kings and prophets that followed, and the exile/return of the Israelites to Jerusalem. You start to notice a reoccurrence of the major problem in these passages–the attitude, desire and focus of the heart.

From the outside, no one sees the heart physically. But you can see the heart from the inside out. When I think only on the darkness, ice and cold around me (metaphorically speaking), my actions most often reflect my heart: my attitude gets grumpy, my desires turn selfish, and my focus is not on the Lord. But God sends little reminders to remain in His Love; and today it is the snow–it has restarted to fall…not in mass amounts, but one snowflake at a time.

Love of my life, carry me to Your Light

Every breath that I breathe

All of me…

Snow falling light, tumbling down

Soft and white, it’s so clean

Such a sweet rhapsody

All of me

“All of Me.” Performed by B. B. Winans. My Utmost for His Highest. Word Music, 1996.

3 Comments

Filed under Books and Movies, Muffy, Uncategorized

Tagged as , , , , , , , , ,

November 2, 2013 · 10:19 pm

Be My Refuge

This morning’s breakfast routine started in normal fashion. It wasn’t until I got up from where I was eating at the counter that I noticed a small dog running around on the back patio. Mom had left me a note saying she had already fed Muffy, so I hadn’t bothered to go out before I started preparing my meal.

Glancing out the door, I figure Muffy is long gone by this time and started to wonder where the dog came from; he had a collar and when I opened the door to say, “Go home,” it started nosing against the screen door like Muffy when he wants to be pet. Cute dog, but when it started eating Muffy’s food, my tone in voice changed and I got loud, waking Marcia up in the mean time.

With my balance so off as of late, even going out to feed Muffy is tricky with the back porch steps, let alone Muffy rubbing against my legs and circulating around me wanting to be pet, I often just have to stand there holding the one handle attached to the side door. This dog, I could tell, would be even worse as it was a bit of the hyper type, so I did not really venture out until it left the patio. Marcia did get a chance to look at his tag; it was our neighbor’s dog. Marcia and I watched him run under the patio and since we couldn’t do anything about that we just went on to continuing breakfast.

As we were finishing, Marcia states randomly, “I think he has Muffy up the tree.” Sure enough, this pup is frantically jumping, circling, howling, barking at the tree. I didn’t know Muffy still climbed trees as he is “getting up there in cat years,” but I have to admit, I was quite impressed! 🙂

DSCN3008

DSCN3000

DSCN3009

Once we figured out how to get the visitor back to his fenced yard (I was also impressed by the size of the hole he made in the fence), it was time to try to get Muffy out of the tree. Marcia stood underneath coaxing him and trying to help him, but Muffy was not moving. I didn’t want him in the tree as we were planning on being gone for a few hours, so I decided to step out on the back patio and just try calling his name to see if that would help. I blurt out, “Muffy…here kitty, kitty, kitty.” Within a few seconds, I see black move in the tree and watch as he makes his way down (again, impressive) and run up the patio towards me. I just stood there, holding my handle–swooped down and gave him a good pet.

This week, I have been reading the Psalms and often found myself in the Gospel of John as well. The Psalms make reference to God being a refuge. I love this imagery. A refuge for me is like a fort…strong, protection, a place where I feel safe. I also think of it in terms of comfort, a place of warmth. I think the reminder of those images is like a backdrop to remembering the promise that God will never leave me nor forsake me (Deuteronomy 31:6). Jesus never said this world would be easy (John 16:33), but my Refuge is unwavering for all eternity.

My sheep hear My voice, and I know them, and they follow Me. And I give them eternal life, and they shall never perish; neither shall anyone snatch them out of My hand.

John 10: 27-28 NKJV

10 Comments

Filed under Family Times, Funny Stories, Muffy, Uncategorized

Tagged as , , , , , , ,

August 26, 2013 · 10:47 pm

Looking Upward

Over the weekend, I finally accomplished putting into chronological order and placing my college to present pictures in photo albums. It brought back many great memories. As I sorted, I found these pictures that made me laugh at the memory of the evening:

scan0001

scan0002

scan0003

During my years living in the Denver area, I lived in a neighborhood called Bel Mar. On the corner of Wadsworth and Alameda, this was the rising place for living and shopping. The Target I was employed at was about fifteen minutes from Bel Mar…connected to a flat mall that had an indoor mile track that ran its course around the stores. I enjoyed a mile walk on my lunch breaks. I think every mall should be modeled after that one.

Even though there were a few Target stores in the area, Bel Mar also built one a few months before I moved. It was one of the “new city” model styles where the parking garage was underneath on the “first floor,” making the actual retail store on the second floor, all of course equipped with escalators, a stairway, and an elevator. I opted for the escalators.

Mom came to Denver every other week to help me on my chemo weekends. After the grand opening of Target (we had watched it being built over time), I wanted to show her the inside of the new Target. Up until this point, I had only been in a few times, because it was more convenient for me just to get my needs and groceries from my Super Target rather than stop at another one on the way home. But with Mom, we had grabbed a few groceries and as we left, I made a discovery: they even had an escalator for your carts!!! I was laughing so hard, Mom was afraid I would fall down our own escalator. 🙂

Currently, I have recently developed a phobia of walking down the stairs. Going up the stairs is not a problem; just coming down. Too many falls in the past few months has triggered this phobia, but I can’t say that I had really classified it as a fear up until a few weeks ago when I mentioned it to a friend. Now I am not even sure if it is just the stairs I fear falling–I think it is falling in general.

With my balance continuing to worsen, I have now restarted Physical Therapy, but it takes place here at my house. Due to the decline of function in my hands (especially the right hand), I will also be starting soon some sessions of Occupational Therapy. The reason for having the sessions here at home is to help me with my everyday living. For example, because I started my first PT session last week, we did a huge overview of my current conditions and discussed the areas in which I need assistance. Most of my current frustrations deal in the realm of OT, but balance was a major issue for me in PT. She gave me a suggestion for going down the stairs sideways, but to be honest, it doesn’t make me feel any better about the decline. As for right now we are mainly focusing on extra balancing exercises to accompany the PT strengthening exercises I have been doing already.

To access my current conditions, my therapist had me perform some “strength and mobility” tests. I can only stand on one foot for a mere one or two seconds…and standing with one foot in front of the other depends on which foot is placed first. Considering I have had two blood clots in my left leg, don’t be surprised to hear that it is my stronger leg. I think it always has been to be honest. When we lived in Colorado, I did get the chance to learn how to snowboard before my balance would no longer permit the activity. My Dad insisted that my sister and I take a half day of lessons before we just went out on our own. At the rental shop, when deciphering which foot you will put forward on the board, the rental personal did a little test. He had me turn around and gave me a slight nudge. I put my left foot forward first. He said, “You’re a regular foot.” (A right foot is called a goofy foot.) I think if anyone gave me a little nudge today, I would just fall over.

I am seeing the reality that my balance and falling will worsen. I have no control over it. There are days when I am to the point of tears at my balance. Other days, I find humor in it. I think it parallels the balance of life: days when strength is strong and days when strength is weak…in both I need to keep looking upwards, knowing when I fall, He still stands.

I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.

Psalm 121: 1-2 ESV

4 Comments

Filed under Adjusting to NF2, Family Times, Funny Stories, Muffy, Random

Tagged as , , , , , , , , ,

July 21, 2013 · 7:12 pm

The Book: “NF2: Our Journeys”

Question: Where has this year gone? Here we are in July already! Stop and think for a moment on all that you have done in the past six months. If you are like me, you may be wondering how you are going to write your Christmas card this year; thankfully, we still have another six months to figure that out. 🙂

As I reflect, there is a list of major events on my calendar: blood clot, hospital trips, Physical therapy, paintings, a few visits to see grandparents, Spring Break vacation, books read, made new friends, turned another year older, overcoming new physical limitations, visited my sister a few times in Columbus and Megan visited from Colorado…and last but certainly not least: I wrote about my life (limit 1500 words) for this book NF2: Our Journeys.

  DSCN2413

DSCN2414

January 2, 2o13–a representative from The Children’s Tumor Foundation contacted me through my blog in response to a letter I had sent to the foundation at the end of the previous year. Three days later, she contacted me again. The Children’s Tumor Foundation works alongside a foundation in the UK called, Children With Tumors. There was an opportunity for those with NF2 to participate in this publication (sharing their story)–all started by Jessica Cook who also lives with NF2.

January 9, 2013: Unexpected blood clot.

January 10, 2013: In hospital and I get an email from Jess. This is where it began.

I can count on both hands how many people I have known/met personally that live with either NF1 or NF2. Yes…less than ten people. It was only when I started this blog that my social group of “meeting” people who live with NF2 expanded slightly. When Jess first emailed me, it was about the book. I had no idea over the next five months I would not only get to be part of this amazing opportunity to share my journey of living with NF2, but also make a new friend in the process.

January and February were crazy months of doctor appointments, physical therapy and painting. I had until the end of February to write my story. Not that I procrastinated, but a combination of all taking place those months and just a lack of not knowing what to say, I finally forced myself to sit down a few days before the due date and write. I submitted it the day the rough drafts were due. By this time, Jess and I had been emailing back and forth and she responded to my draft with praise saying that it was what she had expected. That put my nervousness at ease.

My story was edited (spelling, grammar, punctuation) by Jess and a few of her friends and then sent back to me to read and review. I asked my cousin, who is known for her exceptional editing skills, for help on a few sentences and wordings–then satisfied–I sent it back to Jess saying it was final on my end. I picked my “author name” for the introduction and submitted a picture. (Muffy is famous! 🙂 ) By this time, I now had told my family about Jess and the book; I had mentioned it to my doctors in Cincinnati and wrote about Jess to my grandparents. Just talking about it all was exciting!

Getting to know Jess over the past six months has been both encouraging and inspiring. We never started our emails from the past (full life story)…we started right where we were at the moment. Sure, past events have come up in our conversations, such as, physical changes we have endured, emotional battles we have overcome (such as isolation and self-image struggles) and how living with NF2 has broadened our life’s story in ways unimaginable.

Jess’ work in the UK through her social advocacy website and group–Can You Hear Us?–has inspired me to be connected. I have been reading other blogs from people living with NF2 and (though good intentions) need to make a better effort to seek out the Deaf community here. It has also helped me to seek out the possibilities when life hands you disabilities; I believe God placed this book opportunity in front of me for a reason–because these past six months, I have seen my body change and weaken faster than the other nine years of living with the disease combined.

I say it often, but it is the truth: It is only by God’s strength and mercy that I can still function what I am. And He has shown me in abundance the past few months that what I currently struggle with physically is not the end–there is still more to my story waiting to be told. There is always room for hope…

My story: I seems to be a re-occurring phrase over the past few weeks. A few days ago I thought of the hymn “Blessed Assurance.” I think Fanny Crosby wrote what I feel about my story best:

Perfect submission, all is at rest
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This is my story, this is my song,
Praising my Savior, all the day long;
This is my story, this is my song,
Praising my Savior, all the day long.

– – –

To buy a copy of the book:

http://canyouhearus.co.uk/nf2-book/shop/

(Shipping is included in the book price and PayPal converts the total for those ordering from the United States.)

For More Information:

Cook, Jessica (producer). NF2: Our Journeys: A collection of inspirational stories written by people with NF2. Lavenham Suffolk, UK: canyouhearus.co.uk, 2013.

5 Comments

Filed under Adjusting to NF2, Books and Movies, Hospital Trips, Muffy, Paintings

Tagged as , , , , , , , , , , , ,

June 21, 2013 · 12:44 am

Thursday’s Terrible Tumble

Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up.

Ecclesiastes 4:9-10

I wouldn’t call it ironic, but yes, I did read this passage of Scripture in the early morning hours with my cup of coffee.

The day seemed to start so typical in routine. Awake by 7am-ish, make a cup of coffee, feed Muffy breakfast, watch a deer eat the farmer’s soy beans, eat my own breakfast and morning readings. This morning, my intent was to get to the gym for an exercise before coming home to finish a few lingering projects. I should stop planning my days.

I leave a note for my sister that I headed to the gym with a salutation, “Be back soon, xo.” I had used the bike yesterday, so today I wanted to walk two miles in preparation for Sunday’s NF Walk in Cincinnati in corporation with raising awareness and funds for research with the Children’s Tumor Foundation. We have known about this for months, but I was not fully interested in taking part of the event until I participated in the Miami Valley Women’s Center, “Walk 4 Life,” in May. Shortly after this, I emailed my family to see if they were interested still in the idea, as I would only be I interested if someone walked with me. I would not walk again by myself. Although my parents would be out-of-town that day, my sisters committed to the walk.

So, taking my momentum of excitement to the gym, I decide I can walk the two miles better in a straight line than 16 times in a circle around the indoor track. I go for a treadmill. My thoughts betrayed me.

I was doing just fine. I actually have no idea what went wrong. I am a symmetric person (the accountant in me to balance like an equation), and when I exercise it is no different. I warm up for five minutes then do a faster walk for ten or twenty minutes then cool down for five minutes. I was walking slower than an average person’s stride for the first five minutes, clutching the handle with both hands. I barely notch up the speed to get my legs moving and I don’t even think it was but a few minutes later that I just came down.

It was slow motion: my nose planted in the middle of the handle bar and I try to pick myself up and regain balance but then my feet just buckle from underneath me and down I go…hitting my mouth on the way while belly flopping on the moving tack. I very ungracefully glide off and somehow landed on the floor sitting up cross-legged. I had lost my glasses on the way down so I can’t see and hold my nose and say, “Ow. That hurt.” Then I realize I am bleeding from my nose and considering my fall plus blood thinner pills–well, the equation was very messy and did not balance.

Within seconds I had at least from what I remember, four people at my side. One gave me towels for my nose, another had my glasses and two finally helped me to my feet when I was ready. The lady there helped me to the bathroom to wash my hands and arms and then when I was a bit clean (still bloody nose), I sat out at the tables and they did paperwork. They were very concerned and helped me call my sister (we woke her up) and she came to pick me up.

The rest of the day goes from there…while I sit on the couch with ice on my already blackish-blue nose, Marcia is making all the necessary phone calls in order to figure out what to do next. My doctors at Children’s wanted a CAT scan of the nose and neck to ensure nothing was broken but most importantly the bleeding factor, even though I was not showing any signs of something drastic. We ended up leaving twenty minutes later for the ER and spent the next few hours there. Thankfully, my nose is not broken and nothing wrong otherwise but a low INR count.

The point of my story is not necessarily my poor decision to decide to walk on a treadmill with weak legs and ankles (and not attaching the safety stop clip to myself either), but that I would have not made it through the day without the kindness and help from those around me or those on the other end of the phone with my sister. Even if I did not have NF2, I still believe that after a tumble like that, I would have required a helping hand.

This is why I am excited to be part of the NF Walk on Sunday–because I can be a helping hand in bringing hope to others just as others have done for me.

We can’t do everything, but can we do anything more valuable than invest ourselves in another? Elisabeth Elliot

For more information:

My team, “We walk with Mel!”:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1044487&supId=373310036

NF Walk in Cincinnati: http://ctf.kintera.org/faf/home/default.asp?ievent=1044487&lis=1&kntae1044487=AC40628269E94A3193B4E32ACD2CA733

The Children’s Tumor Foundation: http://www.ctf.org/

12 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips, Muffy, Random

Tagged as , , , , , , ,

June 15, 2013 · 5:23 pm

Nature’s Night Lights

Random fact #0613: Mel sleeps with a nightlight. Two actually. One in my main room off on the side left wall and another in the bathroom which I can see from my bed. I am not afraid of the dark–I just don’t like the dark due to bad balance. My night lights serve as a safety purpose, without them, I fall.

I will leave you to imagine how I look when I walk in the dark. Darkness is the reason why I do not especially care for winter months. In the summer, I can still be outside around 9pm and be fine. When it finally gets dark, it is best that I have assistance…usually an arm from a person walking beside me or if I go out on the back patio to feed Muffy his bed-time snack, I initially hold on to the rail by the door to balance then take it slow to a chair (plus the patio lights are on and I stay in the lighted area).

I find it is easiest to wait for Muffy to finish eating by just sitting. Thus, I sat last night with no thoughts–just staring into the darkness ahead of me. Then it happened…Fireflies!!! I have been waiting for this moment since the start of Spring! In my mind, it is now the official start of Summer!!

I remember fireflies when we lived in Toledo until I was six. After the move to Colorado, our days of seeing fireflies were limited to when we took family vacations back out east to visit family and friends. Once when visiting friends near Chicago, we were taking a walk and fireflies came out. All of a sudden, gleeful cries and the pursuit of catching them took place…never mind the fact that we were teenagers. I still find it fun to catch fireflies and last night in my excitement, I banged on the window and yelled, “I just saw a firefly!!” I even held up my arms like a victory field goal, which probably looked and sounded more like George Bailey wishing Mr. Potter a “Merry Christmas” in It’s a Wonderful Life.

Although Colorado does not have fireflies, I don’t think that it ever bugged me. (Bugged: haha, Mel humor!!) I know this because God provided a different form of fireflies: nature’s fireflies. Best part was that I did not have to wait for certain seasons to see them. From our backyard, in complete darkness, the vastness of the evening sky and the twinkling of unfathomable numbers of stars was far greater than trying to catch fireflies.

A few months ago at dinner, I told my mom that I was having a hard time reading Holley Gerth’s blog posts, because all this talk about having God-sized dreams left me feeling like I was sitting in a closet with the lights turned off. “I don’t have any God-sized dreams,” I said. Truth…I still don’t–at least I do not recognize them at the time. Not only my Mom, but countless others have kindly reminded me that I don’t have to do big things to be used by God. Even the tiniest star in the sky is still visible, just because it shines–and it shines even brighter when surrounded by others doing the same.

“Shine like stars across the land.” Philippians 2:15b (The Voice)

5 Comments

Filed under Adjusting to NF2, Funny Stories, Muffy, Paintings, Uncategorized

Tagged as , , , ,