Tag Archives: Colorado

The Room at the Inn

I’m not much help in preparing the bedroom upstairs for my friends visit this weekend. The main problem is that I just can’t get up the stairs…every step says, “Caution!” Like a trail of red flags, so I just don’t enter. Even if I got upstairs, I am useless in changing sheets; So I resolved to help with any needs for cleaning or preparing either on the main floor or the basement (where we will be using my painting studio to decorate with fabric paints the t-shirts for Sunday’s NF Walk.) ūüôā

With thoughts of vacation, I couldn’t help but giggle in memory of my hotel experience from the Colorado trip two weeks ago. Last Fall, when I was having weekly PT and OT sessions, my Occupational therapist and I discussed a wide variety of ideas to supplement my needs in the areas where I was physically struggling to perform the daily tasks. She also helped me be aware of resources available for when in time I needed more help. Most of the “when in time” resources seemed irrelevant at the moment, since my physical body overall was doing pretty well.

“When in time” moments started catching up to me around February–I think the first being the shower chair. At first I was embarrassed–even to show people my room was enough, because with the bathroom door open, you can see the raised toilet seat handles. Not your typical bathroom. But I quickly dismissed this notion of blush, because it is when I realized that being independent in this area, I saw a blessing.

My OT mentioned a few other future reference ideas, one being the handicap room in hotels. At that time, I had only purchased the walker for my PT exercises as balancing in my Ankle FootDrop braces was near impossible. Even in February, I only used my cane when I left the house. Now the use of my walker is 99%. I even purchased a second walker to keep for house/back patio/basement use, while the older one is left in the garage for when I leave. The plan has worked smoothly, I think.

There is a first time for everything and the Colorado trip held no exceptions. There was the new way I checked through security, pushed in a wheel chair and now the hotel room. Mom and Dad helped reserve a handicap room, but before one gets to their room, they must get in the hotel. We pull in the parking lot and see the main lobby doors cut off in entrance by the yellow “Caution” tape. Looked more like a crime scene from Law and Order episodes. Mom goes to check-in using the only other door on the building,which is the back entrance.

The room itself is quite nice. The only significant difference I noted between this labeled room and a regular room was the bathroom. The doorway allowed room for a walker or wheelchair to easily enter and maneuver around. There was a handle attached to the wall by the toilet, along with a telephone. I suppose if you fall off the toilet, the assumption is that you can reach the telephone to call for help. The shower “chair” was what made the whole first-use-of-handicap-room experience worth it (in memories sake)!

In conquering difficult situations from the eye and body of a disabled person, I often mutter to myself (sometimes probably louder than I should) the fact that if TLC ever wanted a new reality show that I would volunteer; a show following individuals with disabilities and how they overcome the obstacles they face daily…what ones make them cringe, cry, laugh. What situations are easy or ones that are absurd. Most importantly, how it affects those closest to them. Anywhere I travel, someone has to retrieve or pack my walker from the trunk; I can get locked in public restroom stalls, because my hands can’t get the knob to open; or retrieving items at the grocery store often requires a helping hand. Mom and I like to swiftly shop our lists separate, so the last time I was choosing a coffee creamer, I asked a kid looking at the sour cream next to me if he wouldn’t mind helping me get the bottle, as I was nervous to drop and have it crack,¬†then spill (just from previous experience at home.)

It is in this “reality show” thinking that I had to laugh. I envisioned the crew filming me as I show the viewers how the shower is set. It was like camping. At the one end, the shower is the standard shower head (but you could detach it)–the other end is “the shower chair.” Now, I can’t complain, because being able to sit was appreciated; however, this wooden beam of a chair that you folded up and down (but was too heavy for me to fold up upon wanting to get out of the shower) was right in the way of how you normally exit a bathtub style shower. I was barely able to keep a grip on the handles and was thankful not to have fallen completely out. The next shower, I had to have Mom fold the beam up for me before I exited.

I understand that some hotels are older, but in the newer hotels–like the one we stayed in the night before our fight back–I do not understand why there has been no consideration for the shower set-up in handicap rooms. One would think that a walk-in style shower with a sturdy set chair attached would be more efficient for those who cannot get themselves in a bathtub shower. The thought just crossed my mind that weekend as the first hotel gave me much more insight to think of as well: if you’re remodeling the lobby, please make your residents aware that there are missing tiles on the floor when they come in after two days of no continental breakfast to find the place empty of chairs or tables. We used my walker to transport the served cereal back to our room. ūüôā

I may sound on a rant but I don’t mean for this to be so. I just want to make people aware that life brings unseen hurdles in your path and sometimes one needs a helping hand for safety–hence the handicap ramp in the hotel parking lot. Quite frankly, I would not have even called it a ramp, but a slab of steep, skinny, sloped concrete. It was only wide enough for my walker, so if I were using a wheelchair, I would probably have felt safer just hopping the curb. There was no hand railing either; I wanted to quote Marlin from Finding Nemo:¬†

Bob: Hey, you’re doing pretty well for a first-timer.

Marlin: Well, you can’t hold on to them forever, can you?

Bill: You know I had a tough time when my oldest went out to the drop off.


Bob: Hey Marty, calm down.

Marlin: Don’t tell me to be calm, pony boy.

Bob: Pony boy?

Bill: You know for a clownfish, he really isn’t that funny

Ted: Pity


Never before my own handicaps and disabilities did I even think of these situations or how an individual lives each day overcoming even the smallest of difficulties. I’m not suggesting that life be easy, because it’s not and experiencing scenarios such as these is very humbling. It keeps me aware of my surroundings and ever thankful for the help in time of deepest need.

*Finding Nemo. (2003). http://www.imdb.com/title/tt0266543/quotes


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

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.


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.


Filed under Books and Movies, Muffy, Uncategorized

Leaving room for “God Room”

In the Gospel of Mark, chapter 2, Jesus is continuing his ministry of teaching the people and performing miracles. At Capernaum, Jesus was at a house where the crowds of people came in at so much abundance that there was no room to get into the house, let alone by the door.

There were four friends who had a lame friend. Because they could not get through the main entrance, these four friends carried the lame friend to the roof, made a hole in the roof, and lowered their friend right to the feet of Jesus. Seeing their faith, Jesus healed this man both spiritually and physically:

Which is easier to say to the sick man, ‚ÄėYour sins are forgiven,‚Äô or to say, ‚ÄėGet up, take your bed, and start to walk?‚Äô I am doing this so you may know the Son of Man has power on earth to forgive sins.‚ÄĚ He said to the sick man who could not move his body,¬†‚ÄúI say to you, ‚ÄėGet up. Take your bed and go to your home.‚Äô‚ÄĚ At once the sick man got up and took his bed and went away.

Mark 2:9-12a, NLT

Today, childhood friends from my hometown,¬†sister¬†and brother-in-law, and friends from college days walked the Children’s Tumor Foundation NF Walk in Denver, Colorado.¬†Their¬†walking as a team¬†and raising support¬†on my behalf for the foundation and its future research¬†made me think of the four¬†friends¬†of the¬†lame man.¬†They walked with the same hope as any persons living with a disease: that someday there will be a cure. Right now there is no cure for¬†my disease¬†(that circumferences NF1 as well.) Sometimes these walks¬†for diseases seem so helpless in the bigger picture of the dying world, but what matters is¬†keeping the focus¬†on a hopeful future found in Jesus Christ.

But it is easy for me to lose sight of hope when all¬†I see everyday is my body aging away. I don’t even know what to pray for at times.¬†I know God has given knowledge and wisdom to countless research teams and doctors across the world to help patients such as myself;¬† I am very thankful for my¬†team of doctors and¬†therapists and trust their guidance. But even they can only do so much. It is our human nature. It is where “God Room” comes into faith.

I just finished Franklin Graham’s autobiography,¬†Rebel with a Cause: Finally Comfortable Being Graham.¬†I know I am about fourteen years behind from when it was written, but I am glad I took the time to read it as it taught me a few lessons in life and faith.

In one of the chapters, Franklin accompanies his friend Bob Pierce–founder of Samaritan’s Purse–on a world tour to see first hand the work that Bob ministered through Samaritan’s Purse to the hurting, sick and needy around the world by helping assist missionaries already in the areas. During the trip, Bob tells Franklin of leaving room for “God Room.”

‘God Room’ is when you see a need and it’s bigger than your human abilities to meet it. But you accept the challenge. You trust God to bring in the finances and the materials to meet that need.

I thought about this in my own life. With starting Physical and Occupational therapy a lot of my mindset has been, “These are things I can no longer do easily on my own or at all on my own.” It gets frustrating. So last night, I prayed for “God Room.” I didn’t go through my whole list of things wrong in my body. I figured God already knows that…but what I focused on was trust–trusting that God would (will continue) to meet my needs–both physically and spiritually. My physical condition is out of the ability of myself and doctors…but not out of God’s ability. With Him all is possible…and that means the “God Room” is pretty big!

*Graham, Franklin. Rebel with a Cause: Finally Comfortable Being Graham. Nashville: (Thomas Nelson, Inc., 1999.) Page 139.


Filed under Adjusting to NF2, Books and Movies

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:




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. ūüôā

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


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

When It’s Hot

We’re experiencing a heat wave here. Even our bike ride yesterday late evening left us in¬†a sweat. So imagine today when we decided to take a stroll at John Bryan State Park around one in the afternoon. Yep…HOT!

The shade from the trees offered a bit of relief but there was nothing more satisfying than a cold drink of water (and I suppose having the AC on full blast too).



Jeremiah 17:7-8 says, “Blessed is the man who trusts in the Lord,¬†whose trust is the Lord.¬†He is like a tree planted by water,¬†that sends out its roots by the stream, and does not fear when heat comes,¬†for its leaves remain green, and is not anxious in the year of drought,¬†for it does not cease to bear fruit.‚ÄĚ


It has now been two weeks since I started the Sirolimus chemo treatments. Thus far, the only side effects I have had are an increase of problems in the intestines (which also is a combination of tumor pressure) and my mouth is always dry! It feels like I am dehydrated even though I am drinking more. However, I have no mouth sores yet, in which I am very thankful!

When it’s hot, I take a drink of water and remember the life I have been given–through trials, an opportunity for growth; through pain,¬†an opportunity to give thanks; through¬†weariness, an opportunity to rest.

“And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.” Isaiah 58:11

Treasure Falls

Treasure Falls 2


DSCN2491¬†Treasure Falls,¬†(Hwy 160,¬†Colorado.) 24×48 canvas. July 2013.


Filed under Adjusting to NF2, Family Times, Paintings

Treasure Falls

Today’s hot temperatures (and I mean HOT!) reminded me of a few things. First and foremost, I had nothing to complain about since my AC was running and I sat inside for the most part. Last week’s storms hit pretty hard. There are still thousands without electricity. Please pray for those who still have none as tomorrow is said to be record high temperatures.

And today, as¬†I used my day off to write letters, I also sorted through some pictures from our CO trip in June. We took Wolfe Creek Pass to a site-seeing area called Treasure Falls. It was a little hike (and thanks to Dad’s walking stick and his arm) I made it to the top. Another “breath-taking view”…if I can borrow the term for the two meanings. ūüôā

All who are thirsty

All who are weak

Come to the fountain

Dip your heart in the stream of life

Let the pain and the sorrow

Be washed away

In the waves of his mercy

As deep cries out to deep (we sing)
Come Lord Jesus come
Holy Spirit come
As deep cries out to deep

-Kutless, “All Who Are Thirsty”

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Filed under Family Times, Random


My thoughts the past few days have been consumed with memories. Colorado. Mmmm, it has been a long time since I have sat down and been totally overwhelmed with thoughts, especially of my favorite things, people and places. Sort of like a noun…a noun can be people, places,¬†things or an idea. There is also¬†proper nouns.¬†Colorado. It sort of fits in all those categories! That is a pretty good noun!!!! ūüôā

Blue skies, no humidity, snow peaks, sunsets, friends, family, and my favorite city in the world: Denver.

I love Denver. I loved the neighborhood I lived in…it put me ten minutes from the mountains and less than ten minutes from Downtown. People would ask where I was from. “Denver,” I replied. It sounded so cool. Denver is home of my favorite sports¬†teams, coffee shops, and parks.¬†I also thought the art museum¬†was amazing, bonus free admission on the first Saturday of the month. Denver on the map makes sense. The streets are numbered horizontally and¬†most streets going vertically go from farthest north to farthest south. Sometimes I would just get in my car and drive around the city. By the time I left, I was a city driver! I could even parallel park Downtown!

There is so much about Denver that I love.¬†Most of my thoughts this week were of Denver.¬†Of my “family” I left behind.¬†Thoughts just came at different moments during the day…the¬†fun¬†memories, the bad memories, the places I visited often or drove past daily. College memories. Post-grad life.¬†My old roommates and the times we had together.¬†Walking across the street to my best friend’s apartment to hang out. My first paintings. Going to work in the morning with the sun rising in my rear view mirror…while I was looking towards the purple mountains and blue sky out of my front windshield. Hanging out with my downtown ministry on Thursdays…there is not a day that goes by where I do not think of those kids.

It is hard to believe that a whole year has come and gone. It was last year during this week that I was saying my goodbyes.¬†The year has been a crazy one! Far more than I ever dreamed of, but still…Denver holds that¬†title…”Home.”¬†I think it will just always have that title.

But there is so much more of Colorado to see¬†past the cities.¬†Although I must¬†say Colorado Springs was another favorite place!! You get past the cities to the small¬†towns in the mountains (or at least surrounded by mountains).¬†The ranches, cattle, crops, rodeos!!! My sister and I shared a room that faced the crops across the road. There was nothing like falling asleep to the sound and smells of fresh-cut barely to the hums of the combines. Then the cows in the pasture out back would take on the encore…not so beautiful. LOL.

Looking back, the town I grew up in was perfect.¬†Growing up I did not think that way…it actually took moving to Denver for me to realize that fact.¬†ūüôā

Our¬†hometown was like¬†the song of¬†Cheers…

Making your way in the world today takes everything you’ve got.

Taking a break from all your worries, sure would help a lot.

Wouldn’t you like to get away?

Sometimes you want to go,

Where everybody knows your name, and they’re always glad you came.

You wanna be where you can see, our troubles are all the same;

You wanna be where everybody knows Your name.

There are things of a small town that I love. For one, we knew everyone at school in all grades. Yes, that is possible…and we were not that small of a school but small enough.¬†I still regularly chat with my close girlfriends from those days.¬†Others will send me emails to ask how I am doing.¬†I think that is special. Which brings me to the main point of small towns…everyone knows everything about everyone else. In other words, word travels fast. ūüôā

There are so many fun things to do in the surrounding mountains. Every summer we would take a camping trip. Camping…in a tent and most of the time where there were no outhouses. Yeah, nature’s luxury at best. Hiking, canoeing, and my not so favorite of fishing. There is an old mining town about an hour away…that is my favorite mountain town!! In the summer, they set of 4th of July fireworks from the mountains above town. Sitting on a hill on the other side was always cold but had¬†the greatest view. There were a bunch of tourist shops…best coffee and fudge around!

I am sure by¬†now you¬†might be wondering about all this random chat about¬†Colorado. First,¬†I think it is because I realize that¬†God has his own unique way of answering¬†my prayers. I wanted to move closer to family but did not realize at the time how hard adjusting would be after spending¬†my whole life (minus the first 6 years) in Colorado. But looking back over the one year here, I have seen so much family! I love my family. And now part of my family is back in Colorado…talk about vacations!!! Whoo hoo!

Speaking of which, I should be packing. YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! THE TIME HAS COME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ūüėÄ As of a few hours, I will be IN COLORADO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My thoughts have been so consumed with this all weekend!!! I could not focus last night…so I sat down and read Psalm 139. It really is an amazing Psalm about God knowing us from even before we are born…he knows the plans he has for us (Jeremiah 29:11). I wanted to read this Psalm mostly because I wanted to control my anxious thoughts. Verse 23-24 says, “Search me, O God, and know my heart; Try me and know my anxious thoughts; 24 And see if there be any hurtful way in me, And¬†lead me in the¬†everlasting way.”

So there I sat. I just started talking to God about all these things in my head…I was trying to plan out what I could see in my short time there…but my anxious thoughts were becoming overwhelming. It was almost like driving in the mountains but you spend the whole time reading a book (which I will refrain from doing. I am only taking it for the plane rides and for if we go fishing. ūüôā ) But do you see what I mean? I finally realized the best way to go to Colorado is to let go of my past memories¬†and take in new ones. I can stop planning because¬†I don’t have to see everything…there is not enough time anyway.¬†But I can enjoy what I do see and the people I see it with. My anxious thoughts are calm, but I still can say, “I can’t wait!!!” ūüėÄ

P.S. I do hope to see one of these. ūüėÄ

We liked this song growing up:







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