Tag Archives: trusting God

Homemade OT

“Do you want to go out on the patio to sit?” We had just finished dinner and Dad was up from the table already starting to clear the dishes to the sink. It was a particularly toasty day, so I had only ventured outdoors when Mom drove me to my short doctor appointment in town. But around supper, the temperatures dropped slightly making the air pleasantly calm and a soft warmth.

“I’m not sure what I am going to do,” I reply to Mom’s question. Before dinner I had finished a book–downloaded on my Nook–that a friend recommended to me. I was all caught upon emails, not planning on starting any paintings, had a clean room and just did laundry a few days prior, and didn’t feel like resuming finger-poke blog entries just yet. In a word, I was a bit bored. I could have called someone on my Captel phone for a conversation, but decided fresh air was needed.

I was taking the last of my medicines in the kitchen and thought of what to do while outside. Mom was going to be planting the yellow Columbines she recently bought from Lowes and Dad was working on (what looked like to me) weeding and installing the new garden hose. Never being one with a “green thumb” and now too adding my limitations of walking, bending over due to balance and my hands–I am pretty much no use in the garden. (Although I do play a role sometimes of watering the flowers and small bushes near the house with the hose.)

I decided I could sit at the picnic table and continue where I had left off earlier in the morning, reading and recording the verses where the phrase, “steadfast love,” appears. I had started this quest last Fall, but stopped after finishing Psalm 119. The notebook of references fell to the bottom of my upper right dresser “junk drawer” and it wasn’t until yesterday that I found it.

Lost in thought about the Psalms, Mom comes back to the kitchen and starts talking to me about using rice as an Occupational therapy exercise. Taking into consideration how the numbness in my hands affect my feeling, holding or picking up objects (I demonstrated with my medicines,) Mom continues to explain this simple exercise in an excited fashion. Totally missing a few context pieces to the conversation puzzle, I just understand that if you put rice in a bowl with objects, such as beads or coins, use your hands to feel around for the objects (because you can’t peek in the bowl for them), then it helps–not only your hands and finger touch awareness–but strengthens the mind. It’s like a psychology OT exercise! Stimulating!!

Instead of sitting around the picnic table, Dad suggests sitting under the tree nearer to where they are working. It was lovely! As I am getting ready to pull out my Bible, Mom asks if I wanted to try the rice bowl activity. “Sure,” I say. Mom goes in and gets a bowl of rice and places in “hidden objects” for me to find with my hands. The objects slowly discovered: nice sized wooden beads and pennies. “How many pennies are there?” Mom turns her head so I can lip-read, “Twenty.” Twenty? I found two. 🙂

It amazed me how just weaving my hand in a bowl of rice “looking” with my fingers for objects, felt like an exercise. My hand was physically tired; I rotated between left and right. My physical therapist had commented on how much atrophy she saw in my hands, then showed me a strengthening exercise to help with the curling fingers. But it persists. The hardest part of nerve loss is that it can never be regained, though I can keep it for as long as possible if I retrain my brain using the muscle exercises. It might not amount too much, but it is better than being idle.

The book that I had finished before dinner is an autobiography titled, Life, In Spite of Me: Extraordinary Hope After a Fatal Choice, by Kristen Anderson. At age 17, Kristen had lost all hope to live and attempted suicide by laying on a train track one block from her home. But she did not die. God, in miraculous ways…unfathomable ways…spared her life–a second chance. Through the long, hard recovery, Kristen came to know the healing power of God’s forgiveness, mercy and grace. Although she didn’t understand God’s timing, she started to share her story. She had questioned what life would hold with no legs…her future…but the more she shared, the more outflow of how her testimony helped others who were hurting came to light. Feeling God’s call, Kristen started in full-time ministry and founded Reaching You Ministries.

There are moments in my life where I question my abilities, strengths and future. It is not an easy road…and unlike Kristen, my body will never recover here on earth. But the encouragement and hope I found in Kristen’s testimony gave me the reassuring peace that my abilities, strength and future are not like the shifting sands…but solid, unshaken…held in God’s hands.

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.

Refrain

On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground isinking\

“The Solid Rock.” Edward Mote. 1836.

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Everything

When I first started figuring out how my new Nook tablet works, I–very cautiously as not to outspend myself–enjoyed uploading a few books to my personal library. I also subscribed to a year’s reading of the magazine, Reader’s Digest, and accessed a few apps for more readings and entertainment.

It was while reading the latest edition of the Reader’s Digest that I came across a single picture page titled, “Faces of America,” by Glenn Glasser. The picture is of an artist, Joe Beene. I know nothing of Joe Beene except for what the picture reveals–he is quadriplegic.

In a sun-room style area, the yellow walls are brightly lit from the many windows and glass door on the left. The center focus of the picture, you see the artist at work. Joe is not just any artist…he is a painter. And in the picture, he is painting by mouth. The picture is a side view, so you cannot see the painting straight forward, but even from the side angle…one can see an extraordinary, vibrantly-colored painting!

There is no article, no details, no explanations. There is one question:

What was the darkest time of your life?

Joe Beene: When I had everything.

(Reader’s Digest. April 2014. page 33.)

And I sat thinking about this simple statement again as I finished my morning coffee–Could I say the same?

This is the time in your life when you must learn to let go: of loved ones, of possessions, of control. In order to let go of something that is precious to you, you need to rest in My Presence, where you are complete. Take time to bask in the Light of My Love. As you relax more and more, your grasping hand gradually opens up, releasing your prized possession into My care.

Young, Sarah. Jesus Calling: Enjoying Peace in His Presence. Nashville: (Thomas Nelson, 2004.) March 24 entry.

 

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Carried in Love

“It happens every time,” I say in tears with a mouthful of a Fiber One bar. I take a drink of my re-heated coffee, then continue, “I do so well; then the week before my doctor appointments, I just don’t!” Of course, I also state in frustration that I think it’s a conspiracy. I am not sure what the case is (definitely not a conspiracy), but this situation does seem to happen most often around doctor appointments.  Maybe it’s just ironic.

This morning was like any other Sunday: a rush getting ready, downing a small breakfast amid hoping to leave on time, but still needing to put on my socks and boots. In my hurriedness coming out of my room, carrying my winter coat and boots, my right leg locks at the knee as I round the corner in which throws me off-balance. I tumble-down backwards, dropping everything and hit my head on the floor. My parents were still here, and within a minute of falling, Dad came to the hallway and assisted in picking me up off the floor.

Just a few days earlier, I spent a whole day conquering my file box! (Also termed: The Twilight Zone!) After hours of organizing and sorting, the results are rewarding. All that was left to accomplish was shredding a stack of old bank statements. Dad un-jammed my shredder and I started happily shredding away! As it starts to fill, the shredder gets a slower speed and makes noises (unknown to me.) Dad comes in and tries to tell me this, but I defend my shredder saying it is able to shred up to so many pages and that it is just full. Not really implying that I need help emptying the bin, Dad makes his way to help me anyway. Sitting on a stool, I start to stand to get out of his way, but result in slipping…knocking the stool over, I too stumble backwards. It was like a crash-landing. I have never hit the floor backwards so hard ever before, and in a moment, I was in the worst pain and instant tears. But Dad was there, and helped pick me up.

As he helped me get comfortable on the couch, I started to feel bad for bickering in justification the few minutes before the fall. Seemed so silly; and Dad finished shredding my papers. This morning, after finally getting my boots on, I realize that I probably shouldn’t drive in the snow that was piling down. I text Dad and tell him I am just going to stay put, safe and sound. “After all that,” I mumble as I go ahead and just brew a new pot of coffee. But I am glad I stayed. My morning readings brought me to ponder God’s unfailing Love, as I thought about my Dad having been by my side after each fall. Truth: Dad won’t always be there, but God is ever-present in times of trouble. (Psalm 46:1)

Missy [his daughter] could fall down and hurt herself, even if I’m walking right there beside her. That doesn’t mean that I allowed it to happen. She knows, as far as unconditional love, I’ll pick her up and I’ll carry her. I’ll try to heal her. I’ll cry when she cries. And I’ll rejoice when she is well. In all the moments of my life, God has been right there beside me. The truth of God’s love is not that he allows bad things to happen. It’s His promise that he’ll be there with us when they do.

–Clark’s response to Marty’s question: Why does God allows bad things to happen to decent people?

Love Comes Softly. 2003. Based on the book by Janette Oke.

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Thinking of you.

Three words. It can change the whole course of the day, especially when God intervenes in timing. He knows when you need to hear them spoken to the soul, when you need the nourishment because the circumstances around you have left you exhausted and dehydrated. I can’t even count the times this has happened during my journey, the last 11 years.

Last night, I found myself on Youtube watching those inspirational-acts-of-kindness movies that get you a bit teary eyed. It might be part of my personality traits, but I got to admit…all those childhood days of pretending to be Florence Nightingale came to memory and I suddenly wanted to do something for someone. Something big. I wanted to be one of those inspirational stories; I wanted to make a difference in someone’s life. All I could think of was donating money to different places. Why does it always seem t0 come to that?

Today I finished an autobiography, Unthinkable, by Scott Rigsby. He is a double amputee above the knees. At the age of 18, a truck collision shattered just about everything in his body, especially his future dreams. Reading the first two chapters you clearly see that it is a miracle he is even alive. Over the next twenty years, Rigsby went through countless surgeries, therapy, drug addiction, party life, seven years of college (and still graduating with no sense of direction in life), a severe case of TBI (traumatic Brain Injury) and depression, debt and no money for bills, in and out of jobs and lawyer cases for settlement issues, and the constant public eye at his “disability.” I think he went through just about everything.

In his own journey, God led him to a place where Rigsby surrendered everything and it was only then that God started to piece together a new course: the unthinkable. Rigsby had always been a runner, but dreams of a future in that seemed impossible; he is now a life showing that nothing is impossible for God. After picking up a few sport related magazines with stories of triathlon athletes, he got a crazy idea–he would participate in a triathlon. He had virtually nothing going for him..not in the physical or financial realm, training or knowledge of what this all entitled…he just knew this was the open door that God was gently leading him through–the chance to use his disabilities to bring God glory for the capability.

As I read, it became obvious that God used ordinary people with big hearts to help Rigsby accomplish his dream: the Hawaiian Ironman triathlon. They saw a need and simply used their time, talents or training skills, connections, hospitality to meet the need. His supporters didn’t act because they wanted to be a huge “inspirational teary-eyed story.” They helped because their thoughts were for Rigsby…they were his “Thinking of you” crew. He couldn’t have achieved his goal on his own. Rigsby now uses his testimony to help others cope with loss and shattered dreams. He doesn’t do it by heroic deeds, but words of encouragement and guidance.

This weekend has left me with many thoughts–I still don’t feel like I have a dream. I still see limits in my life physically, but learned much from Rigsby’s testimony of trusting God with the impossible. I need to be more in prayer for direction–how God can use me (my time and talents) to help others. I don’t want to just say, “Thinking of you.” I want it sincere, with Love.

Life’s most persistent and urgent question is, “What are you doing for others?” -Martin Luther King, Jr.

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Soup on Snow Days

Today is snowed. A lot. I called my grandpa after a late breakfast and as we finished our conversation, he asked if I was getting ready to have lunch. “Not yet. I am still finishing my coffee.” Of course, I didn’t tell him that it was my second cup. But I did already know what I was planning on the menu for lunch: soup and a bagel. Comfort food.

As I was organizing and sorting my books this week, I found a devotional book that I started last Fall, but put back on the shelf without finishing it. It’s titled, 66 Love Letters: A Conversation with God that Invites You into His Story, by Dr. Larry Crabb. Dr. Crabb writes this particular read in a first-person dialect between himself and God. Taking each book of the Bible as a love letter from God, Dr. Crabb asks the question of what we are hear and learn from the love letter; how does it fit in our lives today? And what about the bigger story: God’s story?

Yesterday, I read Part Three: Living in Mystery with Wisdom and Hope. This section included Job through the Song of Songs. In this recent past week, I have had more thoughts of my upcoming appointments and health. In honesty, I think I am seeing a little glimpse of what bigger physical changes are happening, yet still trying to ignore the fact that it is actually happening. As I read Love Letter Nineteen: Psalms, God (in conversation with Dr. Crabb) states,

In the Psalms, I reveal what life is like for the person who lives in the storm with his eyes fixed on me. As you read the Psalms, hear me say this:

Face the hard questions that life requires you to ask. Gather with other travelers on the narrow road, pilgrims who acknowledge their confusion and fears. Then, together, live those questions in My Presence. (Crabb, 91.)

My first response–“I don’t want to face the hard questions.” It has been leading up to this point all week–just from different events, conversations, thoughts or songs coming to mind, and things read in other books–but this morning’s conversation with my grandpa helped finalize the point: facing my hard questions is inevitable. But I don’t face them alone. We all face hard questions about the circumstances in our lives. The true comfort comes is knowing that we’re held and forever in God’s Story.

P.S. This song came to mind this week: “Held” by Natalie Grant.

http://www.youtube.com/watch?v=iOufqWodFNo

Crabb, Larry. 66 Love Letters: A Conversation with God that Invites You into His Story. (Nashville: Thomas Nelson, 2009.)

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Limitless

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

Ephesians 3:20-21

Yesterday didn’t quite seem like the first day of Winter. Of course I was not going to complain…warmer temperatures, a little humidity and rain was a bit refreshing for me personally, as I could actually walk on my own in the outdoors. I probably am quite alone in this excitement, but I am also truthfully a little sad that for Christmas we may be seeing green grass instead of a blanket of white. Guess it just goes to show that, “The grass is always greener on the other side.” I find the weather pattern here to not follow a pattern, so you never know what we will expect this week for the holiday anyway.

Yesterday’s less-winter-like weather didn’t stop us from enjoying the Nutcracker ballet performance in Dayton. Even though I could not hear the music, I was surprised at how much of the music I remembered and also how good the timing of music in my head was to the dancers onstage! (Ok, just had to have the boasting moment. 🙂 ) It was a memorable performance.

It really didn’t start at the Nutcracker, but the past few days my balance has been the worst yet. I think a main reason for yesterday was due to only being able to get a few hours of sleep the night before, so my body was exhausted. I have also struggled again with my bowels, so that may also play a part…the tumor pressure in the lower spine…the increase numbness in my left foot, resulting in a pained ankle and swelling. There are many things. By the time I am getting ready for bed last night, I have already forgotten about the fun of the day–the time I got to spend with my family, the magical performance of dancers, the chance to be out enjoying life.

I used to be a morning person…before my body got old. Before my body slowed, making any hurried situation a nightmare. I despise being rushed or racing time. I never win. This morning getting ready for church was like this. I could have been on time…if getting down into the garage didn’t mean coming right back up to use the bathroom; if getting outside in the wind didn’t interfere with my balance and the fact that I couldn’t get the side door to lock; if putting my walker in my car didn’t mean causing my finger to bleed or using all my arm strength. I slammed the door as I finished putting the walker in the back seat, balanced myself in the wind and let the tears flow. Everything in me wanted to turn right back around and just stay home.

But I got in the driver’s seat. Something in my mind just told me to press on…and church was amazing. I returned home right after church ended and finished the coffee that was still warm in the coffeepot. With the family still at their church service, I got a chance to have some alone time reading and doing some thinking. I read a newsletter from my friend. Her Christmas thoughts are taken from the experiences in her Denver neighborhood. I know the neighborhood; I had grown to love the kids and families there as I volunteered weekly with my friend’s ministry the five years I lived in Lakewood. The kids still send me get well cards–I cherish them.

My friend’s letter focused on Hope. We miss so much in life, because we see limits-even putting limits on God in all that He is, all He provides, all He promises. But God has no limits. He is limitless. I sat and pondered this. Lately my prayers have been mere few words, my frustrations in body leaving me with doubts for my future and what I will become..how it will affect my family. I have tried to ignore it, but I can’t ignore it for much longer. I can’t plan my future, but I don’t want to be unwise about it either.

Why is it hard to fully trust in the Limitless nature of God? For me, it means letting go of all I imagine or want for myself. And I guess that scares me. But it shouldn’t. Why would a Limitless God desire me to give myself fully to him, if He didn’t have a greater picture in mind? And so I seek that faith…that trust…that Hope.

Michelle Tumes, “Dream.”

Chorus: There’s a dream in your heart and His heart is your prayer
You can move mountains with your life in His hands
He’ll tear down the walls and He’ll walk where you can’t
Have faith in the power to believe
He’s given you the dream

2nd verse: I pray your dream will leap beyond you expectations
You’ll see miracles He has no limitations
Listen to His voice a spark will ignite
Let Him be the strength to carry your life
He’ll raise your spirit high

Faith in the power to believe, He has given you a dream…

 

 

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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! 🙂

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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

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Central focus.

This weekend was beautiful. As I stepped out on the back patio, I could feel it. It was the start of Fall weather. I know it is not official until next Sunday, but the change seemed to shout out in the morning light, brisk air, and the first of colored tips in the leaves:

“A new season has arrived.”

I sat in a coffee shop last night with a friend. As our conversation flowed, I mentioned that I have been struggling with self-control (more priorities) of how I use my time. From the time I get out of bed, my days are usually pretty routine. Then these last two weeks, I seem to have lost that routineness. I seem to be all over the map of “to-do” lists of little details or projects needing attention, the weekly home visits by OT/PT, calling family on my new Cap Tel as I try to recapture the time of lost conversations, squeezing relaxing time in to read, or responding to emails which can take a bit of time. The end of the day comes and after all the business of accomplished things, I feel like I haven’t even left the dock. My focus meanders…

It is hard to discern what I need to be doing as I feel I fight against time of my declining body.

“I just don’t really know what to write about,” I say to my friend. Not that I am out if words or post ideas, but each day seems to bring about more change that I don’t know where to start. In the same manner, I see a parallel to my time studying the Word and in prayer: Unsure of the direction I am to take, as some doors have opened and others have closed.

I wrote last week about leaving room for “God Room.” It cannot hold nervousness leading to worry and doubt, but I let mine sneak in through the crack beneath the door. It distracts my focus, my desire of complete surrender…and I need to refocus on the promises that God is with me in every season: especially the ones that bring about change.

As Fall approaches, I anticipate its beauty. Shouldn’t I anticipate the same beauty within my own season of change?

God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.

Ecclesiastes 3;11, NLT

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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, ‘Your sins are forgiven,’ or to say, ‘Get up, take your bed, and start to walk?’ I am doing this so you may know the Son of Man has power on earth to forgive sins.” He said to the sick man who could not move his body, “I say to you, ‘Get up. Take your bed and go to your home.’” 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.

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Two months ago…

Yesterday marked two months of taking the chemo therapy, Sirolimus. Seeming like we had just made the trip to Children’s Hospital in Cincinnati, Mom and I embarked on yet another early morning drive. (And that was sarcasm…we literally had done the same routine on Friday morning for my MRI.) The only differences were (1) traffic–yesterday reminded me of why I don’t miss city driving; and (2) Friday I could drink coffee on the drive down–I could yesterday but not until after my lab work was drawn. I am very thankful for my Mom’s driving as I would have never made it on my own yesterday morning.

Yesterday’s appointment covered a LOT of things. We discussed my walking and balance, PT and OT therapy, the need for ankle braces, driving and safety, better communication methods for me between the team of doctors, and a few fun things like my paintings. 🙂 My initial intent was, as always, to blog the details and keep you informed on the latest like a news anchor, but I don’t think that it is best to do that this time. Everything is changing and more appointments are appearing; I will just blog as it comes.

Tonight I begin with my MRI results: I went to the appointment with a neutral emotion. A few weeks ago, under frustration, my thoughts were that if the tumors had grown more in the brain, then I would just want to stop the chemo. I don’t know where the attitude changed, but I realized last week that I found myself thinking differently. I reasoned that maybe two months was not long enough time for the medicine to have a chance, so regardless of the MRI results, I was fine with continuing the treatments. However, I didn’t want to be a pessimist, but because I have experienced continuing downside side effects, especially in my right hand, balance and right ear, I assumed the scans would show growth.

I assumed wrong. The MRI showed stable in the brain. 🙂 I still could be experiencing hearing loss and physical side effects from the tumors but that is where it gets tricky, because MRI scans only show growth, not density (if the tumors harden they squeeze more on the nerve)…but since there is no way to calculate this, I will just take the good news: there was no change. What a praise and answer to prayer! Two months ago I saw nothing but growth.

Overall, the MRI of the spine looked stable too. I learned something though; instances such as this amaze me at how much I seem to miss…then when I learn about it, my curiosity comes out as a weird question, “I have that??” It seems to happen more often than not…I seriously should do more study on my disease. Anyway, what I learned yesterday is that the tumor that grows in the spinal cord from C-4 to C-7 area has cysts resting on top and on bottom of the tumor. I never knew this. While the tumor has not grown any nor the bottom cyst, there was more fluid in the cyst on top of the tumor. They don’t know where the extra fluid comes from, but the cyst now rests in the brainstem.

They showed me the scan and the top cyst appears to be “ballooning” from the extra fluid (it literally looks like one too). It took me time to understand this effect of the cysts being like balloons, but basically it is like holding a water balloon and squeezing one end so that the other gets bigger. I asked if the extra fluid could be from the tumors in the brain that were growing…just maybe added pressure, but doctors were not sure.

Besides the physical challenges I typically blog about, the thought occurred to me that because this cyst is now in my brainstem, I should probably have more headaches (but I don’t have any) and more neck pain but that is minimal too. I could have a big list of side effects from the chemo, but so far I have only experienced a minimal few. I will remain on the chemo for another two months, then another MRI. Then go from there.

As my parents helped me today with the phone calls for the next step appointments, I thought of how I am surrounded: I have a circle of doctors who want the best for me, a family that sacrifices their agendas for me, friends who encourage me, prayer warriors who faithfully pray for me, and a mighty God who holds me in His hands. Changes are going to come and I am not the best at shifting gears…but as my Mom told me tonight, “You have to be flexible with this.” So as the calendar starts to overflow with different appointments over the next few weeks, I think I should just drop my expectations of how and when things should be done and just let God write in the details. It will make this complicated chaos more livable.

May all your expectations be frustrated.

May all your plans be thwarted.

May all of your desires be withered into nothingness,

that you may experience the powerlessness and poverty of a child

and sing and dance

in the Love of God the Father, the Son and the Spirit.

~Blessing given to Henri Nouwen by his spiritual mentor

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Filed under Adjusting to NF2, Family Times, Hospital Trips