Category Archives: Family Times

May 21, 2014 · 9:50 pm

Everything I Am Not

In season three of The Andy Griffith Show, there is an episode titled, “The Great Filling Station Robbery.” In the beginning of the show, we find Deputy Fife (as usual) trying to bring the Mayberry jail to more modern terms with technology, though it is not needed. As the episode progresses, the Filling Station has a theft problem. A troubled teen named Jimmy had just been given a job there to assist Gomer in the pile-up of cars needing to be fixed while the owner, Wally, is away. Because of his troubled past record, Jimmy is blamed for the robbery. Andy takes the calm road and waits for the next evening to see what happens; Barney, of course, sets a flawed attempt of greatness to catch the crime in action and jumps to conclusions. At the end, it is Jimmy’s knowledge in modern technology that catches the true criminal in action, proving that he was not what everyone thought he was to be.

Although Deputy Barney Fife didn’t do anything to solve the robbery, the ending minutes can make you giggle when Barney calls his gal, Juanita, at the diner. In typical Barney-ego seriousness, he recites a poem:

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Juanita, Juanita…lovely, dear Juanit

From your head down to your feet,

There’s nothing half so sweet–

As Juanita, Juanita…lovely, dear Juanit.

Oh, there are things of wonder of which men like to sing.

There are pretty sunsets and birds upon the wing.

But of all the joys of nature, none truly can compare

with Juanita, Juanita…she of beauty beyond compare.

Although I don’t recite poems comparing a sweetheart to the joys in nature, I have found myself lately in a state of comparison, usually in physical terms only. I can compare myself to others placing myself above them (judgmental) or placing myself below them (insecurity). Yesterday, I did both.

Being disabled, it is easy to find yourself in this position. I wonder if any other disabled individuals can also agree to this, but personally, I find myself comparing my physical and mental state towards other disabled individuals. There is always the persons that are far worse off than yourself; sympathetic thoughts towards that individual mingle with your own thoughts of gratitude…”I’m glad that’s not me.” And it is wrong.

On the other spectrum, there are those who you may consider not as bad as what you endure, so you place yourself above them in judgement. This is my downfall. In comparing myself to others in this way, it makes my own pains seem not as heavy. And it is not so much a condemning judgement, as it is maybe more self-pity; a “I can no longer do these things, but you can…” But even this thinking is wrong.

Comparing myself to anything other than what God holds true in my life can only be “half so sweet…” and I miss the purest blessings of reaching out to those around me.

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May 20, 2014 · 11:58 pm

Strengthening exercises

Yesterday, I had a short appointment to meet my new primary family doctor. It is necessary for me to have a local physician to cover the basic grounds of needs that I may have, like getting my ears cleaned or lab work done. Most importantly, I needed a local doctor to regulate my blood thinner levels when I take an INR test at home. Because I am now at a certain age and new health care policies, some of the doctors from my team of specialists at Children’s can no longer see me as a patient. Not that they don’t want to see me (as I was told last Fall when I had my long day of seeing the team in rotation,) but I would soon be out of their age of expertise. My birthday early Spring marked that I am now too old. 😉

The local family physician will now be, in terminology, my hematologist (regulate INR levels) and my Genetics doctor (regulate my thyroid level and others like Vitamin D, etc.) I am very thankful that Children’s has an adult program for patients with extreme rare diseases like myself and that I am still under their quality care; but for the basicness, I must admit…having care so close to home is a nice aspect.

Going to the doctor’s office usually means paperwork. Even though I have been a patient before at this facility in town, due to new regulations (no doubt) and the fact that it was a new doctor/first time visit for me, we had a questionnaire to fill out before we got into a room and then had lots of conversation questions between the nurse and the doctor. I have been to my fair share of appointments, so I knew the typical routine: height, weight, vitals. Then medicines. Not to say that I am a genius, but somewhere along the way, I finally typed out all of my medicines with their full prescription names and doses. I even alphabetized them. (Genius!) haha. 🙂

Next you cover the basic family tree: paternal and maternal–parents and grandparents. Because my disease is genetic, my two older sisters also get looped in the information. Then it’s me. Where do you begin? We already covered the one sentence definition: I have NF2. I tend to talk too much and too detailed, so usually Mom or Dad give the basic rundown of history, starting freshman year of high school–the basics of treatments and how they affected my body and what doesn’t work in my body anymore. i give my two cents when needed, make corrections or answer questions.

I usually get asked three main questions: Do you smoke? Drink alcohol? Any chance you are pregnant? No, to all the above. So yesterday when the nurse started asking me questions, I was startled by the first, due to–what I considered–the randomness of the inquiry: “Do you drink caffeine?” Now understand, the past week there had been extreme late nights, awakening with early mornings and a bustle of family activity. Even yesterday, after an early morning farewell to Marcia as she heads West for the summer, Mom and I decided to do all our errands in Xenia before the doctor appointment. I like checking off my errands lists, but it leaves me exhausted..especially when in a hurry (my body doesn’t hurry.) “Do you drink caffeine?” Even after my two morning cups of Tim Horton’s coffee, obviously, my mind was not functioning.

I look at Mom with the, “I am quite confused!!” facial expression. “Caffeine,” Mom says. Reading Mom’s lips, the brain solves the equation: Caffeine was your morning cups of coffee. My eyes widen with energy, “Oh yes! I drink caffeine!” I get the reassuring nod and as the nurse continues to look at the computer screen, she asks the next question: “Do you exercise?” Fully awake and comprehending the question, I chose my reply wisely–“Define ‘exercise.'” 🙂 After a pause, I add,”because if you’re looking for running or crunches, then my answer is no. I do neck stretches, but things like walking up the stairs is an exercise for me…everyday living is an exercise.”

It’s true. Trying to stand with good posture or keeping my head upright is an exercise. Bending down to pick up something off the floor is an exercise. Folding my laundry, helping with the dishes or pouring milk from a new container is an exercise. Today, it was walking on the grass with my walker from the parking lot to the circus tent. These daily exercises may not be adequate enough to re-strengthen what the tumors have destroyed–in fact they’re not. But there is still a hope beyond the dwindling physical strength and it is more than adequate.

This is a sacred day before our Lord. Don’t be dejected and sad, for the joy of the Lord is your strength!

Nehemiah 8:10b, NLT

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May 14, 2014 · 9:00 am

Walking thoughts…

As I started brainstorming this year’s NF Walk Team name, I got thinking of different things, mostly the “what if’s” of life. Since ending the Sirolimus chemotherapy in November, I currently now have no treatment options. Although my tumors on the MRI show no change, I still live daily with the increasing side effects and depend on the steroids for keeping the tumor pressure down as best as possible. MRI scans only reveal tumor size; it doesn’t show density or if the tumor is hardening…these affect tumor pressure, resulting in side effects. I have no control of the amount of numbness that continues to spread over my body, increasing weakness of muscles, or my intestines, balance or even the cataracts.

Back in November, it was my choice to end all treatments. I gave the chemotherapy a solid trial, but it turned out in an unbeneficial result. I wanted to live life without the extraness. And I have. I went to my February appointments and said that I had no regrets! And I meant it. I left my February appointment in good spirits; my doctor wanted me to have an “extraness free summer.” 🙂 Hardly two weeks later, I started to notice some change, especially in my right hand. Almost four months later, I am not the same Mel.

A day such as Monday, broke me down. My physical state frustrated me to no end! By mid-evening, my mind’s thoughts were like spaghetti. I stood by my bed clutching my walker and in tears I looked out the window It spoke what words couldn’t say: outside I saw sunshine, wind in the trees, blue sky–freedom, yet I was trapped in a darkened room. I allowed myself to give in to my fears, uncertainties, questions. Over the past year, I have surrendered many things I thought I could not, and I have survived. Like my decision to stop treatments, to stop driving was my choice as well. There is one decision that I will never make or control: the function of my arms and legs. And the thought of surrendering scares me.

When I was in college, I walked everywhere, not only on campus but the neighborhood as well. My favorite spot was a little park about tree blocks from campus. I often went their to swing. One evening, I watched the movie, Gifted Hands, based off the life story of Dr. Ben Carson. I am not sure the correlation between the movie and my thoughts, but as I walked, I remember having a conversation with God in which I told him if I ended up someday in a wheel chair, then I would be at peace about it. Now that I use a walker consistently and wheelchairs are a more realistic possibility in the future, I am fearful. And God reminded me of that conversation. He is asking, ‘Do you trust me?”

I am uncertain that I can say the same statement to God as pure as when I first did, although that is my desire. Like the past, I cannot dwell on the future. And in the present, I cannot set my agenda thinking always that I may be running out of time. But this is most often what I do and I get frustrated, because I am now slow and every thing takes a considerable effort. And it is then that I feel trapped. To once again be at peace, I must let go of the fear I grip. It is not something that will come easy…only by taking one small step at a time.

…I have chosen to use weak ones like you to accomplish My purposes. Your weakness is designed to open you up to My Power. Therefore, do not fear your limitations or measure the day’s demands against your strength. What I require of you is to stay connected to Me, living in trusted dependence on My limitless resources. When you face unexpected demands, there is no need to panic. Remember that I am with you…

excerpt from May 14 entry, Jesus Calling. Sarah Young.

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May 13, 2014 · 9:26 am

NF Walk 2014

Last summer, I had the opportunity to take part in the Children’s Tumor Foundation NF Walk. This fundraiser walk proceeds funding for continued awareness and research about the disease, as well as treatments for those individuals living with either NF1 or NF2. The Children’s Tumor Foundation selects cities across the states and holds this event all throughout the summer. Last summer, I got the information for the walk taking place in Cincinnati. It was more a spontaneous decision, but I was very humbled by all the support we quickly raised.

Participating in the walk was very special. At that point in time, I knew my options for treatments were getting slim, but never imagined the upcoming year that lay ahead of me. So while we were waiting for the walk to begin, we chatted with some other participants, who all had NF1. I was not surprised…I actually think that I was the only NF2 person there. Sitting down for a few minutes, Melissa came with the idea to write why we were taking part in the walk:

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When I learned that the NF Walk would again be in Cincinnati this coming June, I knew I would want to participate. Last year it took me an hour to walk the two-mile course…I used my walking sticks and towards the last stretch, depended on the arms of my sister and aunt. This year, my plan is to push a wheelchair–when I no longer have energy and need to rest, I will depend on someone else to help me to the finish point..walking the second mile.

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My Team name is”A Mile in Mel’s Shoes.” Through this blog, you have experienced the journey right alongside me–the sorrows and heartaches, questions and pondering thoughts, cheerfulness and laughter. Unlike the set course of the NF Walk, the next mile in my life is uncharted. It is a walk of faith. You have walked the first mile in my shoes–and I know you will be there, ready to continue walking another.

Linked below is the website for Team “A Mile in Mel’s Shoes.” If you are interested in joining me, my parents and two best friends since grade-school (coming for a weekend visit! 🙂 ), click on the “Join my team” button for registration. If you would like to give in donations, please select “Donate now.” You can also donate to a team member’s personal page (names are listed at the bottom of the Team page), where comments can also be written. All donations given on either goes towards the team goal.

Click here for link: Team A Mile in Mel’s Shoes 

If you would like to send a donation by check, please send it to the following address:

Children’s Tumor Foundation

120 Wall Street, 16th Floor

New York, NY 10005-3904

– – –

Thank you for walking with me. The journey continues, one step at a time.

 

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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

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May 8, 2014 · 4:06 pm

The Open Door

“What’s the point of having a handicap sign on the door, if there is no handicap button to open the door?” My question was intended for Mom as we made our way into a store. A man nearing the entrance at the same time may have heard my blunt, yet honest, question as he held open the first of the double door entryway. I smiled and said, “Thanks!” as I passed on the way inside.

A situation such as this really is not something that is one to dwell on in frustration. I think I simply asked my question, because I am seeing this same concept more often now that I use and depend on my walker in public. But maybe that is where my frustration sometimes comes from–I think the concept of having a sign but no modem is misleading and I want to voice my opinion about it very loudly.

And this is where my thoughts collide. It is not easy for me to be disabled; sometimes my frustrations at my physical state (slowness due to hands, upset stomach, the fact that I can’t go downstairs by myself anymore or get myself outside either) causes me to want to voice my opinions strongly about the unfairness of life; (I do that anyway when it concerns health insurance woes.) This way of thinking endangers me in selfishness…that things should be as I want them to be.

And so I think of doors in an analogy of my life. Not all closed doors are meant to frustrate; not all open doors are meant for me to walk through; some doors will have misleading signs; some doors will not open on their own, but will take physical effort on my part. Discerning the right door to enter is dependent on the door to my heart–“Guard your heart above all else, for it determines the course of your life.” ~Proverbs 4:23, NLT

Doors of Greece. Pictures taken by Mel 🙂 (Greece trip, May 2010)

Myceneans Mycenaean tomb

Athens Athens

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Philippi Greece0002 Ruins of the church building, Phillipi

Philippi Greece0001 Phillipi

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May 3, 2014 · 7:33 pm

Under the Heavens

Yesterday at breakfast, Megan and I started discussing some of the different college courses we had taken during our years of studies. Old college days have been in thought since this weekend marked Marcia’s college graduation. Our “baby sister” now a college graduate! 🙂

In the course of our breakfast chat, Megan and I discussed our science classes. I had taken Environmental Science (being a Business major, this was the easiest to comprehend–bonus, the shortest labs!) and Megan had taken a course from her college that was equivalent in study to my Environmental class. We both concluded that the study of rocks was not our keen interest. We ventured to other areas of nature…the oceans and heavens, and it made me think back to the last summer I lived at home (San Luis Valley), before permanently moving to Denver that Fall to finish school and work.

IMG_4951 Cosmos.

To cap off my Gen-Eds, I took several online courses from Red Rocks Community College. Besides my Humanities curriculum and online discussions, my next favorite that summer was Astronomy. Being in the science department, this also meant labs. But I didn’t mind the labs. From my parents backyard, on clear evenings with little or no moon, the heavens sparkled!! I could spend hours gazing at the stars, trying to find constellations in my Dad’s telescope or drawing the phases of the moon. One couldn’t do that living in Denver.

Growing up, we sisters would take blankets out on clear summer evenings and lay out on the grass. We would talk about life–funny stories, the little insignificantly seeming things that back then got on our nerves, fears or dreams–and stare up at the sky. I remember feeling so small…one can’t even see the whole expanse of the sky without turning your head. I know the ocean is deep, unmeasurable, but the heavens are unfathomable.

il_570xN.592181820_c2f2 Northern Lights Show.

Once in junior high, I was getting ready for bed. On summer evenings, it was typical of us to leave our windows open as to get a cool breeze and hear the outside voices of nature (my poeticness version of saying, “Hear the cows chewing the grassy fields and mooing distress-fully.”) I was closing the curtains half-way when I noticed the sky was glowing red. My first thought, “Jesus is returning!” and went into an excited panic moment. Then realized it was not, but couldn’t put my finger on what I was seeing. Still in an excited panic state, I ran downstairs (yes, I literally used to run down the stairs), and yelled, “The sky is red!!” My Chicken Little moment. Dad looked out the study-room window, but the corner of the roof blocked his view of the red, making my Chicken Little situation all the more realistic. But I persisted that he go outside. When we did, the sky was aglow! Northern Lights…right out my bedroom window. Unfathomable.

He who made the Pleiades and Orion,
    and turns deep darkness into the morning
    and darkens the day into night,
who calls for the waters of the sea
    and pours them out on the surface of the earth,
the Lord is his name.

Amos 5:8, ESV

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May 1, 2014 · 9:16 pm

Today, May is here

Today I got to paint.

Today my sister, Megan, and Mom joined me. 🙂

Today, my “painting studio corner” in an unfinished section of the basement, became artistic.

If you hear a voice within you say ‘you cannot paint,’
then by all means paint,
and that voice will be silenced.
– Vincent Van Gogh

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More to come…

https://www.etsy.com/shop/BrushstrokesbyMel

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April 29, 2014 · 11:44 pm

Dial tones

Talking on the telephone is not my forte. Let me clarify this: talking to anyone that is not a family or friend is not my forte. It is not social ungraceness on my part (my pride rings in there), but rather, it is lack of understanding. On the receiver end, they lack patience or clarity of how my Captel phone works (though it is the first thing I explain); on my end, it is the words…I sit in delay. And today’s phone call to my pharmacy definitely proved this to be true.

Timely communication. In our fast-paced world, we expect it. And when you face the untimely pair–Deaf person and the automatic voice communicator spouting number options in order to connect the call to a different line, when I just want to talk to a human being), it confuses the system. And when you’re the one on the slower end, it can get to you…very much like the feeling when your “taking too much time paying as fast as you can in the grocery store line.” We can’t handle untimeliness.

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Over the years, I have had many interesting phone conversations while using Sprint Captel online: some calls I literally yelled at the receiver end as their lack of patience exposed my own lack of patience and anger; others I cried, still others I had a pleasant chat. Then I just stopped all phone communication. When I finally restarted, using the Captel land-line phone, it felt like re-learning communication. Dad and I made some test calls; I was so nervous. But the feeling didn’t last long. How could it?, when I finally was able to call my grandparents. 😀

Being Deaf, I could choose to use untimely communication in life as crutch. I would rather use it as a staff, moving forward and learning lessons.

I must speak simply and clearly. Find me alone, and I tend to over talk. It even shows in my writing. Everything must have an explanation. I must define, describe and be known. I want to be heard,  but sometimes being heard means meekness.

Slow conversation doesn’t have to be a hindrance. In fact, it can be enjoyable. Here’s why: when I am waiting for my words to be encrypted, I have to “listen” and even though I can’t hear the voice over the line or timely lip-read, I am processing what the person is saying without thinking of my next “sudden response.” When I sit in a person-to-person chat or talk on Skype, the timely communication effects this “think-while-silent process.” It goes in full reverse, focusing back on myself. When I focus on others, I receive more joy.

Untimely calls can make a difference in someone’s day. And in return, it blesses mine.

 

 

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April 26, 2014 · 8:38 pm

The Art Show

Last week, we–as a family–headed down to Cincinnati for an evening of fun. First stop was a run-around through Ikea (that place is like a corn maze!) with the intent of finding a reading chair for my room. The hunt turned out quite successful as we left with a small recliner-style chair loaded in the back of the suburban. It is a simple, but lovely black chair and it has already been well used! We also went to Jungle Jim’s–the coolest international market around! We all ventured to our favorite places around the world in search of goodies. My focus was the variety of teas: Papaya and Passion Fruit black tea from the Asian section and herbal teas from the England section–Raspberry Cream Caramel and Tangerine Almond.

We then headed out to the Clifton Cultural Arts Center for the art show in which I was a participant, with collaborating artwork and two of my own paintings. Although I barely missed meeting with the three girls that I had been in Skype contact with over the previous months, I did have a chance to meet the two professors–Jenny and Sarah–and one other student from their class. The collaborating watercolor cards (that I started) were not yet complete, so I look forward to seeing the outcome when the girls send them to me in the mail; the painting canvas, however, was finished and on display. Because I had only started the canvases, seeing the outcome didn’t feel like I had any part in the project, though I did. A very strange and new experience, because I still feel as though I make art thinking inside the box…a very traditional view of art I guess. IMG_4913

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IMG_4932 Jenny, me, Sarah

IMG_4916 My own paintings: Clematis in Full Bloom and Fire and Ice

As I ended viewing the art exhibits around the room, I had a chance to talk more with Jenny about the class, art experience and purpose of this particular show. I had noticed a theme: much of the art descriptions discussed around the area of cancer or other life-threatening traumas–the pain, emotions, questions, fears, doubts, hopes and dreams, survival. Jenny mentioned that she had encouraged the students to think deeply of these things and portray them–because we are all affected, whether you are the one facing the trials or it is someone else you know. Art is a medium to express these different side-effects of disease.

One art set was a participant project where cards and pens had been placed on a table. You were invited to write an encouraging letter to an anonymous adult cancer survivor or patient. (Read about full project here: The Mandala Project.) I locked my walker so I could sit at the table and picked up a blank card. At first I didn’t know what to say…I get a lot of encouraging letters, sometimes even from strangers, but here I sat speechless for a few minutes. I finally started just by saying my name and that I didn’t have cancer, but a rare disease with tumors. After my first introduction sentence, thoughts just started to come…

I concluded my note by mentioning strength, because, let’s be honest…whether it’s cancer, NF2 or another disease, any can initially wipe out your strength–physically, mentally and emotionally. I have been there. I still am there. And it is when you cry out in your uttermost weaknesses, that God answers in His fullness of strength…in ways you never anticipated, hoped or dreamed.

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words.

Romans 8:26, ESV

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