Category Archives: Adjusting to NF2

Climbing Mountaintops

Much of our dessert and decaf discussion tonight was about Colorado. Mom even pulled out a photo album and as more talk was being said, I sat side-gazing at the pictures as Marcia flipped through the pages. I felt flooded with emotion…suddenly I wanted to be there, a longing to be home.

C.S. Lewis once said, “If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world.” When I struggled in the late Fall 2013 with inner emotions about what God had in store for me, I had lost sight of His divine picture being painted especially for me. As the canvas continued to emerge with the colors of life, I started to live in hope rather than despair. But I still have a longing–a heavenly one.

Seasons change. Some view valleys as the struggles in life, but for me it is the ascension to the top of the mountains. One only reaches the top by climbing.

Who can possibly ascend the mountain of the Eternal?
    Who can stand before Him in sacred spaces?
Only those whose hands have been washed and hearts made pure,
    men and women who are not given to lies or deception.
The Eternal will stand close to them with blessing and mercy at hand,
    and the God who redeems will right what has been wrong.
These are the people who chase after Him;
    [like Jacob, they look for the face of God].

Psalm 24:3-6, The Voice

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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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What I Lean On

“Help me. Help me.” I blurt out in a semi-panic but soft-toned voice. I knew my sister, Melissa, was behind me with my walker and bag. I had just taken my first step down the stairs leading to the garage; I felt my body starting to lean backwards in off-balance mode. The last thing I wanted was to take another tumble, thus, my cry for help. Melissa helped me rebalance and I slowly descended. At the bottom, my walker is reopened and I place my bag in the middle compartment. Now holding to the handles, I stand and wait for my ride to church.

I haven’t used my walker in the house since around Thanksgiving. Even my cane I have left in the garage and have only used these two walking assistants when going outside the house to town, church, errands or meeting friends and social gatherings. That is until this past weekend. I first started with my cane. I noted at the beginning of last week that getting up to use the bathroom in the early mornings could sometimes have me feeling off-balance. I never used my cane, but just had it resting against my bedside for “just in case.”

Then I fell. Friday afternoon–I was setting up my painting area for a Saturday morning, “Coffee, brunch and painting,” time with  a friend. I don’t even know technically how it happened, because I don’t remember twisting my ankle, but my tumble forced me to my knees. If I had “snapped forward,” I would have just landed harder on my hands. But my fall sent me on backward whiplash; my legs being folded under me, I crunch down on my crooked feet. As I regain composure, but in pain, I try to shift my feet out from under me but find myself underneath the table (that is the part in which I don’t understand!) I knew I was going to have to have assistance getting up off the floor, and since no one came downstairs yet to check on me, I pushed my Lifeline button. 🙂

Friday’s fall resulted in a very sore left leg: a torn ligament in the knee. It is really the last thing I wanted at this time. I already am struggling with increasing frustration at my right hand and just the mental processing of being slow. Now I use my walker more regular in the house–discussion today also mentioned that it might be time to restart my AFO braces (at least the right foot while my left leg slowly heals.) That decision alone will be something to pray for peace about–my choice to end wearing them, and PT sessions, in the Fall was primarily to live without them until I needed them to walk. I can still walk, but it is only by God’s divine power that I still can.

I see myself weakening and I want to be strong; I force myself to persevere, but need strength to lean on.

What a fellowship, what a joy divine,
Leaning on the everlasting arms;
What a blessedness, what a peace is mine,
Leaning on the everlasting arms.

Refrain

Leaning, leaning, safe and secure from all alarms;
Leaning, leaning, leaning on the everlasting arms.

Words by: Elisha A. Hoffman

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My Choice

This may seem like a sudden decision (which it is); but it has been long-time coming. It was one of the hardest choices I have yet had to make, but this time it was my choice and that alone makes me feel like an independent person.  I have decided that for my safety and the safety of others, I am finished driving.

This decision is not a result of just one physical area, but a combination of many since February: increasing numbness in right hand and especially weakness in the thumb, upper arm strength, weakening right ankle, my balance worsening, and overall energy after hoisting my walker in and out of the backseat while running errands. It is not that I am a bad driver–but God used one weekend to show me that I should consider my driving limits before a worst case scenario occurs. If He hadn’t intervened, my body and mind would still be at conflict with each other about this situation. I knew this choice would be coming, yet I wanted to go as long as possible before I had to finalize the word.

Now what? I am not sure. Ten years of driving, owning a car for five. Like my short-lived apartment experience, I have many memories. Many stories of me and my car. I am now just shifting driver seats to what I do best anyway: co-pilot; but it will take time to adjust to the transition.

For everything there is a season, and a time for every matter under heaven. Ecclesiastes 3:1, ESV

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Selfies

I’ll be the first to admit that I am not tech-savvy. I still use a flip phone, none-Mac laptop and a digital camera. My social media world consists of this blog (I know the basics), a Facebook account and a Twitter (I had to ask my cousin why people wrote with #hashtags as I was clueless.) It was only two weeks ago that I joined, what I consider, the elite ranks of e-readers, as my parents helped me pick a Nook that met my needs now that my hands are starting to change and holding books is not always an easy task. Considering all this, it should not surprise you then if I told you that it was only at the beginning of this year I learned a very important word in the world we know today. The word: Selfie.

By now you have probably regained your composure from having fallen off your chair in laughter, but think me not of being a complete hillbilly, because in my defense, I was taking “Selfies” longer than the word has even been around. And I did it with film camera and it’s timer. It was only this past weekend that I placed the two key facts together (my own pictures and term definition) to realize this discovery:

scan0001

This is me–fresh high school graduate about ready to leave for my first year of college. It was a Sunday and when we got home, I decided to try taking a few “artistic” photos before lunch. I grabbed my golden 35mm Kodak camera and went to the barn where my eye had distinguished a few candid areas. I placed my camera on the third and final step that led to the upstairs recreation room, set the camera to timer mode, and quickly sat in the weeds smiling in the direction of the parked Honda. I didn’t move until I thought there had been plenty of time for the camera to “click.”

When I developed my film, I had no idea if my “Selfie” had even turned out with me actually in the picture; other past pictures had been out of focus, too far away or too close, cheesy, or vain attempts to remember my long locks of curled hair. And so as I sat this past weekend sorting my pictures, I thought of how we see pictures today: Instant. There is no waiting for the film to develop or anticipation of seeing the pictures while waiting in line to pay for them. No strenuous task of ordering reprints by holding the negatives to the light or frustration of even having bad pictures as we simply delete what we do not want before ever ordering prints online anyway. We share our pictures on social media then comment, like (or dislike), and tag each other. Everything in an instant.

I am not condemning “Selfies,” social media or even modern technology, because even I enjoy these and take part in them. It’s more the combination of having found my old pictures and then having to face my life in a new aspect of the “Selfie” living with NF2 that this past weekend caused me to slow down. Even just for an instant and face reality, choices. Life is about choices, change. And one day, it will be set for eternity.

It will all happen so fast, in a blink, a mere flutter of the eye. The last trumpet will call, and the dead will be raised from their graves with a body that does not, cannot decay. All of us will be changed! We’ll step out of our mortal clothes and slide into immortal bodies,replacing everything that is subject to death with eternal life.

I Corinthians 15:52-53

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In the Storm

I’m just going to be honest here…this weekend has been rough. Like a sea of emotions, mixing memories of the past with the present times and having to face the reality of potential changes in the near future. Collide them together and the waves crash into the boat. And it feels as though I have been thrown overboard and I get physically sick. Weak and vulnerable, I feel my courage start to fade.

I am in the middle of the storm. A voice calls out,”Take courage! It is I. Do not be afraid.” (Matthew 14: 22-33)

He bids me come…but I am fearful of the waters, the waves–I am fearful of letting go of the sinking ship that is currently keeping me afloat. I must decide. Do I wait until the boat is no more or do I release my grip while it is still in sight? The decision is mine. How long I remain at stalemate is unknown.

Yet in the storm, I see Him waiting. He has not abandoned me. I cry out; I plead for strength, discernment, hope.

Reach down for me, True God; deliver me.
The waters have risen to my neck; I am going down!
My feet are swallowed in this murky bog;
I am sinking—there is no sturdy ground.
I am in the deep;
the floods are crashing in!
I am weary of howling;
my throat is scratched dry.

But, Eternal One, I just pray the time is right
that You would hear me. And, True God,
because You are enduring love, that You would answer.
In Your faithfulness, please, save me.

Psalm 69: 1-3, 13 (The Voice)

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When You Give

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

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

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

if_you_give_a_mouse_cookie

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

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

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

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

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Clumsy Me

Considering how clumsy my hands have been lately, yesterday morning I thought I was functioning pretty normal: no spilled coffee or dropped medicines, no broken dishes while unloading the dishwasher, efficient in time getting ready and typing (finger poke) a few quick emails. By noon, I was on my way down to the basement to start the top portion of a large painting.

I was having no problems getting my paint tubes from their assorted-by-color plastic containers on the floor and only had one jammed lid due to dry paint. The sole reason I forgo getting beauty nails at a salon is that I manage to paint my own nails (and hands for that matter) in a very festive way. I also chip my nails in a very festive way…and as such was my painting morning.

Somewhere along the way in the afternoon, the tides changed and my hands resumed their clumsy status. Of course the cold fingers could also be associated with part of the problem. I am very thankful that I have not done damage to assets like my laptop as I carry it from my room to the kitchen. I drop my cell phone repeatedly, but it has a protective cover–that is now cracked (time for a new one!)

Yesterday before dinner, I asked Mom to carry my laptop for me back to my room–a brilliant request as I was losing my grip on many other things during the evening…in particular, circular objects like my biscuit full of apricot jam and cylinder shaped objects like my Hazelnut creamer as I was pulling it from the refrigerator shelf. It fell to the floor, lid cracked, and about what I would blend in three cups of coffee spilled on the floor. It was the grand finale to my day.

I’ve written blog posts before about my hand history: how the muscle atrophy started, Occupational Therapy sessions, finger splints and other devices to help my function as my hands weaken, and my left ring finger resembling the appearance of a “Gonzo nose.” And although my MRI results since November have reported back as a stable status, there is a continuing message coming from some tumor (unknown) to the brain that blocks the message to the muscles in my hands–specifically fingers and thumbs. Hence, since November, I have experienced a loss of hand function…which means more weakness, more numbness and 7 more fingers that now too are starting to resemble a “Gonzo nose.”

In moments of clumsyness (or flat-out frustration, embarrassment), I sometimes have a moment of humor–where I can smile contrast to grunts or tears. Enter: Yzma.

EP8aT0z http://i.imgur.com/EP8aT0z.png

In Disney’s Emperor’s New Groove, Yzma goes from being Emperor Kuzco’s long-time guardian and advisor to being fired after she plays “Empress” in his absence. In a fury, she devises a plan to rid the empire of Kuzco and reign in his place. All goes well and according to plan until her handyman, Kronk, burns his spinach puffs at a dinner they prepared for the Emperor. Kronk dashes to the kitchen leaving behind the freshly filled cups on the platter, in which one is intended for Emperor Kuzco with poison. Upon returning, Kronk realizes his mistake, takes the platter to the side, blends all the liquids together returning a portion into each cup, and then gestures to Yzma not to drink hers. She quickly throws hers in the plant beside her, turning it too into a llama (but looks more like a horse.)

At the end of the movie, Emperor Kuzco has had an adventure that leaves him with a changed heart and a new friend, Pacha. As these two enter Yzma’s secret lab to retrieve the bottle that would turn Kuzco back into human form, Yzma and Kronk are already there. As Pacha tries to quickly grab the potion, Yzma knocks the shelf so all the bottles land on the floor. “Oops! Clumsy me,” is what she says. 🙂

My hands–as they continue in this weakening and clumsy state–are another part of my journey. I cannot lie that I have had many thoughts about what life will be like in the event I lose complete hand function. “What am I going to do when I can’t use these?” I cried a few months ago in the kitchen holding up my hands for Mom to see. Mom didn’t have any answers; I didn’t expect her to either. I know God holds the answers…to my prayers in all the uncertainties and fears, hopes and dreams. Unlike Yzma, I will never hear Him say, “Oops! Clumsy me.” Because He has promised me forever in the palms of His hands.

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My Latest Days

Oxymoron: (from the Greek),

an expression with contradictory words: a phrase in which two words of contradictory meaning are used together for special effect

(Bing Dictionary)

“Are you ready to sleep in and enjoy your first day of Spring break tomorrow?” It’s Friday night and we are driving home from a spur of the moment decision a few hours earlier to go out to eat as a family and attend a Nicole Noredeman concert. The fast food dinner, Piada: Italian Street Food, was a new experience and a most tasty one! My main reason for going out that evening was simply dinner with family; I had initial thoughts of not going, but quickly resolved that I could read a few chapters in my book when the others enjoyed the concert session. The concert being at a church, I sat reading in the foyer and got to text my sister, Megan, as well. An evening satisfactory to all.

My question on the drive home was at a red light; there was enough street lights glowing for me to lip read. Marcia slightly nods but adds, “I think I would rather have a full day of doing nothing than sleeping in all day.” I nod in agreement, but as the fullness of her sentence replays in my brain, I couldn’t help but burst out laughing! “Do you realize that what you just said is a huge oxymoron!!” I continue to rant in laughter about this sentence and we discuss it for a few more minutes until it is dark again. The rest of the drive home, I sit in silence.

“A full day of doing nothing.” Right now, my days sometimes feel like this. It is not that I am actually “doing nothing” all day–more what I am doing is nothing planned on my agenda. I am notorious for daily to do lists…there are days when I see great progress and check marks on the sheet of paper; other days, I simply cross off the current ‘day” and set the next in hopes to complete the projects then. I don’t think it is necessarily bad to make lists (I would forget important events/dates/details otherwise), but it has also taken me a few years to learn to become flexible. I am still learning to be flexible. And so, my latest days have been filled with being flexible and “doing nothing” on my to do lists.

Take today for example. I was hoping to get up early and have my usual breakfast with coffee/readings. My list entitled doing the dishes and getting my laundry done; making a phone call to my grandparents; finishing a painting; writing a blog post (different one than this); and finishing a book. Actual day included rising early–nothing like a Charlie horse cramp in your right leg for an alarm clock–and falling out of bed, because I had put my right foot forward in attempts to get to the bathroom. You hear people talk of starting your day by getting out on “the right side of bed” (figurative); since I already have that part complete (literally), I say, “Start your day with your best foot forward.” Obviously for me, it is my left foot.

I contemplated getting ready for the day and having my coffee time early. Instead, I crawled back in bed figuring I can read a little; if I fall asleep, I assumed that I would wake in an hour or so and be back on my feet around 9am, as that is pretty typical. I end up waking four hours later..bummed that I had wasted my morning hours, I get brunch and coffee anyway. I get ready for the day, type a few emails and run some errands in town with Mom in the mid-afternoon. When we returned, I had about an hour before I was to have a Skype session and so I started my laundry.

My Skype chat was to be with a group of girls from the University of Cincinnati DAAP about my artwork. A social worker from Children’s Hospital–who was the first person to initiate my paintings as part of an art viewing when I first moved here-had given my name and contact to this group, “Art for Survivors,” led by Jenny Ustick. Since I cannot make the actual class in physical presence, Jenny suggested Skype.  I brought up some paintings from the basement to show and ask my questions. My session was set with three students of Jenny, who were familiar with my painting styles through my blog. It was a great conversation! I asked my questions on how to thicken my paint for texture, abstract ideas, different brush sizes for different techniques, and pricing artwork. They gave me some suggestions for new abstract techniques and will gather some painting medium information for me as well. Towards the end, art shows were mentioned and I was invited to take part in their art viewing in April.

Suddenly, my “full day of doing nothing” turned into an evening of full possibilities! I am ready to restart my paintings–growing and learning in the process; living in flexibility. “Whatever you do, work heartily, as for the Lord and not for men.” Colossians 3:23

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Lifeline

Yesterday morning, I spent two hours at the hair salon getting my perm redone. For the amount of time taken, the result looks lovely (and bonus points to me as having no sense of smell fully pays off in these instances.) Nearing the end, I had twenty minutes of waiting, during which the solution needed to soak into my hair with the curlers still set in place before my stylist removed them. I asked the lady sitting next to me if she could pass me a People magazine…just something to glance at as I waited. “Pointless readings,” I tell myself, but I didn’t read much anyway as I didn’t have my glasses on at that moment.

I did happen to find one good article about a girl my age who lives with Down Syndrome. As I skimmed the blurry article, I was impressed by her courage not to let the disease define her; she had even gone to court to declare her independence rights on choosing where to live. I don’t know her name or the edition of the People Magazine for quotes, but I do remember reading a few sentences where she states that she is an independent person–she just might need a little help sometimes. I had two thoughts: First, I fully relate to what she is saying. She and I may struggle with vastly different physical limitations, but there is a common understanding both in emotional and mental thoughts of what it means for independent living. And second, whether you struggle physically or not, don’t we all have moments where we might just need a little help? It is our human nature; it keeps us humble.

When I first moved back in my parent’s house, I thought I was losing all independence. It took time for me to process that I never lost my independence; living at home ensures that I can live independently. Yet, I am surrounded by family who can help if I just might need it: opening zip lock bags or medicine bottles if Walgreens places the lids in the wrong direction; putting on my compression stocking or clipping my toe nails; carrying my groceries up the stairs or my full laundry basket to the washer. Or in the event that I have car problems, need to get Muffy’s food from the patio but it is dark outside, I accidentally break a dish while loading/unloading the dishwasher…help is there as well. It is safe independent living.

hermie “I’m…independent!” (samefacts.com)

To maintain continual safe independence–while at home–I now wear a Lifeline necklace. Wearing this necklace does not change any part of how I currently live. I still get up in the mornings on my own; bathe and dress on my own; make myself meals and, of course, the morning pot of coffee; I can still write (chicken scratches), type (finger poke), text, and paint; I still climb up and down the stairs, even if it is a slow one-step-at-a-time; and, I still drive, run errands or go to church on my own as long as I have the energy and weather permits me to do so.  The Lifeline’s purpose is to inform others if I needed help–the communication is accurate and efficient. The necklace works only at my home (garage, basement too) and outside property. Once I leave the driveway, I am too far from the sensor for any signals to send.  However, being out in public, my chances of being all alone are quite slim. 😉

When we first set the Lifeline in place, I was confused as to how I, personally, talk with the personnel over the communicator (set up in my parents room) as I am Deaf. I really do nothing, except push the button on my necklace if I need assistance. The personnel from Lifeline contacts my parents through the communicator and notifies them that my button was pressed, so they can check on me. If no one answers that machine call, they immediately start calling my emergency contact numbers in order; my mom’s cell phone is first, etc. In the case I fall and I am unresponsive, the sensor on my necklace cues in on this and Lifeline automatically sends emergency medical help. It is safe independent living.

Lifeline is unlike a regular 911 emergency contact. It doesn’t have to take a catastrophe of epic proportions for me to push my button for assistance. It can be something even as simple as accidentally breaking glassware while doing the dishes and not being able to safely step away from the glass; if Mom is outside working in her garden, how would she know I needed help? The necklace is also waterproof, so I wear it in the shower. It is only by God’s goodness and perfect timing that my parents were still at home on that Sunday morning when the first blood clot hit as I was in the shower. Because I was hyperventilating and had my left arm slung through the handle on the shower wall in order to stand up straight, the only way I could contact for help was to bang my right fist against the shower wall. At that time, I didn’t even think it was being heard. After a few solid bangs, my mom finally decided to check in on me. You can see the importance of having this in place as I continue to live independently.

Although Lifeline is often aimed in advertising for the elderly, I know for myself–and the family–wearing the necklace puts ease in the mind of constant “What if’s?” It reminds me of my times in prayer. I don’t have to wait for epic catastrophes in order to present my requests to God. Prayer replaces the “What if’s?” with constant peace.

The Lord is my chosen portion and my cup;
you hold my lot.
The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.

Psalm 16:5-6 ESV

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