Category: General Articles (Page 1 of 2)

When They Say You Are Crazy

A year ago today, R (soon to turn 16) was having surgery to remove all cartilages from her 4 lowest left ribs, along with a little bit of sharped bone. Little did we know that in May, she would have another rib surgery on the other side, along with that accompanying hospitalization.

Then 30+ faints over the past 4 months and 1 day.

Or to 2 concussions, blindness, hair loss, significant hearing loss, and some memory issues.

Ten hospital night stays broken up between 4 different hospitals.

Seven ambulance rides (including a 4-hour ambulance ride to one out-of-state hospital).

Seen in 5 different hospital systems in 3 different states.

Undergone many more pokes, tests, draws and scans than anyone should have in a lifetime.

Not In Her Head

After a dozen tests and appointments in another big hospital, we have confirmation on some suspected conditions, as well as some new diagnoses. Multiple doctors in two different state have been telling us that her symptoms were only physical manifestations of emotional trauma. (Once this theory was proposed by one doctor, everyone who encountered her chart thereafter, jumped on that premise. We’ve been battling this mindset for months now, while watching our daughter continue to physically deteriorate, growing worse by the day.)

We would not settle for the “emotional” answer, even when a panel of a dozen doctors in one hospital room included a passionate young intern who fought tears as she proclaimed, “Until you can believe, and help your daughter accept the fact, that there is a psychological basis for her illness, she will not, can not, start to get better!” Let it be known that she has at least four document-able PHYSICAL health issues at play here! I am so thankful God did not allow us to settle for that garbage-can explanation!

How To Pray

If you are praying with us, we are specifically asking God to continue to give our current doctors great wisdom and insight, and to bring hidden things to light. While all the guys stay here for work and school, I will fly R. back again in another week and a half for even more testing. (My husband’s job has been so flexible in allowing Rick needed time off and the ability to work remotely. Thank you also to family members who are significantly aiding with transportation and medical costs!)

Less than 24 hours after our last appointment and diagnosis there, our oldest was tentatively diagnosed, back here at home, with a separate serious issue. We are in a 2-week testing phase to see if we can confirm his working diagnosis, or if a new approach will need to be taken with his care. If he has what his doctor thinks it is, the answers are hard, but we would finally know what we are up against. If he doesn’t respond favorably to treatment trials, we will wave to expand the search into other specialty field and do some deep digging!

God is good ALL THE TIME. We are in a wild storm, but my Jesus walks on water and will hold us every step of His perfect way!

First Adult Job

With all else going on, I will be starting a new job on Monday morning! Because we were getting so many emergency calls from the school each week, we got to the point, around Thanksgiving, that any time our daughter was on campus, I would also be at the school. My days were typically spent sitting in the front office or clinic all day, volunteering however I could, while waiting for medical code calls to be announced every time our girl fainted.

By being on campus, I was immediately available for feedback as the school’s emergency response team evaluated each situation to consider ambulance need. After a few weeks on campus, I was asked to apply for an open position. I soon filled out my first job application in over 20 years (for a job I did not get offered back then). My interview was shortly before Christmas. It is exciting to have a reason to be there each day, other than waiting for my girl to go down!

 

 

Not What You Think

Rick took the day-shift in ER yesterday. I traded places to spend the night in the hospital roll-away cot last night.

In bed, IV penetrating left hand, not our daughter for once, but the 19-year-old!

In the meantime, our girl’s longest faint-free record since this all started on Sept. 8 was reached yesterday, 11 days, 2 hours!

She proceeded to faint again tonight too.

This afternoon she lost more hair.

The book that’s become a family tradition every Christmas closes with these words:

“Surely,” the woman spoke softly, “the Lord lives this day.”

“Surely,” said Father, “the Lord does live this day, and all days. And he is loving and merciful and good.”

…To these truths we cling!

Not THAT Thick

Have you ever said, “I wish there was something more I could do than pray”?

Lately God keeps impressing on my heart that prayer can be much like “digging through the Berlin Wall with a spoon”. Prayer feels so ineffective at times!

I looked up facts about the Berlin wall. I expected it to measure many feet thick, like The Great Wall of China or something. While I could never find actual wall thickness dimensions, the picture evidence shows that, as boarder walls go, this one really wasn’t THAT thick!

https://www.irishtimes.com/news/world/europe/how-the-berlin-wall-fell-a-chronology-1.1987852

Photo credit: Irish Times

It was tall, stretched on for miles, was stationed with watch towers, armed guards, attack dogs, anti-vehicle trenches, and more.

But the depth of the wall itself? Not that impressive. Only barbed wire in some places!

Tactics

That’s the thing about the enemy. He traffics in intimidation.

Sure, he has multiple tools of the trade, but when it comes to what appears to be the hardest thing of all, yes there is work required, and the progress might seem neither swift nor evident, but the barrier is far more fragile than the devil would have us believe!

So get on your knees and start digging with renewed fervor. Sharpen your blunt weapon of prayer by way of vigorous and repetitive use. As you faithfully erode the foundations of your insurmountable wall by prayer, you are leaving cracks and inviting God to do the heavy work of tearing down, not just your wall, but removing every enemy blockade that accompanies your barrier!

Explaining Soup

It has been 7 weeks at 2 days since our 15-year-old’s saga started. We’ve been in local ER 4 times, twice resulting in 2 night local admissions, once sent home, and most recently the local ER visit resulted in her getting ambulanced to an out-of-state hospital for a 3-night stay last week. (The ambulance made it in 4 1/2 hours in the middle of the night with clear weather, but drive has taken as much as 8 hours with bad weather and traffic.) We also flew ourselves to a different children’s research hospital three weeks back, where she spent two full days in about 10 1/2 hours of outpatient appointments, followed 3 nights inpatient.

Between all these hospitals, I’m happy to say we have ruled out pretty much every imaginable life-threatening issue we would need to take imminent action to address.

We know a ton of things that are NOT wrong with our girl, and for each we are very thankful!

She has been off medication for over a week (last dose was a week ago Wednesday) and fainted again Sunday night, twice Tuesday (instigating the ER trip that resulted in Stanford ambulance), but not at all since. Perhaps we are dealing with  something in the autonomic world??? (Yes, we started with a tentative POTS diagnosis on our very first hospitalization, then that has been repeatedly questioned, medications have been tried with severe complications, and now we seem to possibly be circling back around to something potentially related to the original diagnosis.)

We anticipate about three more months of intensive testing, likely to unfold in about four different states, before we expect to have clear answers. I’ll probably not talk much about specifics, or answer most questions, as it is all rather overwhelming, confusing, and medical advice is often contradictory.

What I do know, what we cling to now more than ever before, is that God is sovereign, that He has a good plan for our daughter and for our family, and that He is loving, just, and wise.

Current issues are fainting (though not in the past six days – thank you Lord!), blindness, hair fall (but most of her bald patches are filling back in with new growth), some recent hearing loss (as of a week ago Sunday), and fairly intense cognitive/memory issues (since Tuesday, Oct. 23rd). Tuesday morning our daughter initially did not even know her own name, when the school was trying to wake her from her first faint. After that, she knew one classmate, but only the name and not why she knew the name or who this person was. It was a hard struggle, but she could piece together who Rick and I, and both of her brothers (though one only by nickname and not given name) were.

The one and only name she did not struggle to identify, came about an hour after initial faint. I asked, “Who is your Savior and Lord?” Without a moment’s hesitation she beamed, “Jesus!”

Our girl has gradually regained more and more grasp on reality, remembering a few past events. She currently has about an 80% grasp at retaining most new-to-her information as we tell it to her. She remembers next to nothing of this entire past couple of months, does not remember having had either surgery earlier this year, or that she has ever broken any bones – she’s broken 8 for the record.) She does not know her favorite color (Rick says blue, I think it was green) so has decided (remember, she is blind, so this is a memory choice) that she now prefers yellow.

We eat soup and tacos each several times per month; she did not know either word and we had to explain both. In most things she acts like a mature nearly 16-year-old. Random words and memories are totally non-existent to her. And we are dealing with a lot of breakthrough 4-year-old type questions and emotional behavior.

Please pray as Rick and I and her school, as we start arranging accommodations to face these newest challenges.

Bald Blind BEAUTIFUL

Yesterday, our daughter posted a selfie on instagram. In her own words, her hair “was falling out in handfulls, and I told myself I wasn’t going to loose my hair to sickness or medications, and if I was going to be bald it would be because I was confident enough to not feel like I need my hair to protect me or make me beautiful and to be able to shave it off myself, so that’s exactly what I did”.

In synopsis, since September 8, we have been in two ambulances, three emergency rooms, countless doctor’s offices, and inpatient in hospitals in two states, three times. We know a ton of information about what is NOT going on, but no clear answers about why she is struggling.

She hasn’t fainted in three weeks now. She is still totally blind (lost eyesight within 48 hours). Over half of her hair fell out, in individual strand cascading like a waterfall, (over two weeks) then in huge chunks as large as 4×6 inches of baldness at once (over 36 hours)! We broke down and shaved the remaining hair on Wednesday after another huge section on the side of her head came off with the beanie she wore to school on Wednesday to camouflage the large patch missing off the back of her head. One area fell out in a nearly-perfect heart shape, so once we shaved her remaining hair to ¼ inch, the bald heart looked intentional.

Today will be our third doctor’s appointment of the week. She is very frustrated by the amount of school she is missing. We are tying to emphasize that our priority is her well-being. The teachers, school staff, and her counselor are being fantastically supportive. The school started her on learning Braille on Wednesday and started mobility safety training with her VI (visual impairment) teacher today.

We are on the waiting list for a referral to an “undiagnosed conditions” program out of state. Please join us in praying that she will be accepted into the program (they receive so many applications that only a small fraction of kids actually get in). Also pray for doctors to have wisdom to figure out what’s going on and be able to help her. According to God’s perfect will and timing, we are simply requesting full healing for our girl, whether He wants to accomplish that through the common grace of medical aid, or to move miraculously to bring about dramatic healing that glorifies His name by leaving the medical community without explanation!

It is a HARD road we are walking. (If you don’t know the backstory, I told more at missed-deadlines and literal.) We are clinging to God’s grace through the darkness.

I cry to you, LORD;
I say, “You are my refuge,
my portion in the land of the living.”
– Psalm 142:5 (NIV)

Missed Deadlines

I’ve missed at least three deadlines and a doctor’s appointment this week. I’m sorry if you were one of the people I let down. I’ve reached my limit and I know it!

One of my children had to go back to Renown (where they were admitted 2 weeks ago) via ambulance from school yesterday. They sent us home last night so that we could go to a previously-scheduled appointment today (fastest treatment plan). We went to that appointment with hospital bags packed, in case we got admitted to Saint Mary’s (other main hospital in Reno) today, but by God’s grace, those bags were not needed.

My child will not be allowed to attend school again until at least Oct. 8, and will have an MRI as soon as insurance approves. Vision is the immediate concern, as yesterday’s hit to the head darkened this child’s eyesight dramatically, now only seeing lights, or details about two inches from the nose, about 17% vision.

The bigger scare is that this is day 18 of the underlying medical crisis we still don’t have clear answers over. We now counted about 11 major (and a few minor) events in 2 1/2 weeks.

Rick is out of country until Friday night. He has been amazingly supportive to the best of his ability, but it is really hard on him to be so far away. Please pray for our other kids too. Our parents and adult son are taking up all the driving duties as I’m still without a driver’s license since my strokes.

Physically I’m utterly fatigued, exhausted. I fell asleep today in the length of time it took a son to go get a drink of water. We were talking when he came home, while I rested in bed after a medically-intensive day. He was thirsty, so ran to the kitchen for a drink. When he came back a moment later, I was asleep. He tried to tiptoe out of the room, but the phone jolted me awake. Our entire family is in desperate need of long, refreshing, restorative sleep tonight.

I don’t have words to even try to describe God’s grace and peace in the midst of this storm though. I’m afraid any attempt will come off sounding corny. Simply know this. Life is very hard. God’s love is so much bigger!

Guidepost Writing Course

I love to write.

I love to help other authors polish their skills.

So when I learned I could review this product and tell you how to receive two hours ($90 value) worth of Master’s level video writing instruction, plus all the course extras, all for less than $25, I was ecstatic! You’ve got to check out the amazing Guidepost Academy training course, How To Tell A Great Story.

That this advice is offered through Guidepost, a magazine known within my writing circles for being a really tough magazine to break into, has me especially intrigued. Since I hope to submit a story for their 2020 competition, I really want to hear all they have to say!

Given our past month (Who am I kidding? Make that seven years!) of medical craziness, I have honestly not had opportunity to complete this entire course yet, but I am so looking forward to doing so.

Read what others have said about the high value of this incredibly low investment:

Guideposts Academy 5 Stars

By Patricia Parish

July 8th, 2018

This course an incredible opportunity for me. No university could have done better. So much for so little money. I thank you all so very much. Will be sending something to you all regularly even if all I get is rejections! So grateful for the helpful information, I am tearing up as I write this. Patricia (Pat) Parish, Blessings to the teachers and all your personnel.

Rating: 5 of 5

Quick Course that is Very Helpful

By Barbara Litchfield

April 30th, 2018

Thus course is excellent!  The short recorded sessions with Edward, Rick, Colleen, Jim, and Amy, were full of helpful information for writers in any genre.  The workbook download helped me with note taking and reinforced the learning.  I also am grateful that I can retake the course whenever I need a refresher.  It is definitely worth $24.99.

Not The CODE BLUE I Know

Our school’s “Code Blue” is NOT the same as a hospital flat-line code.

Just sayin’.

This would have been really nice information to know before one of our kids’ schools called me at 9:30 this morning, to say they had to call a Code Blue on this kid today!

 

Our school’s code blue simply means “serious medical concern”. It is an all-staff call for medical assistance, not usually a statement of resuscitation needed!

The cardiologist’s decision late yesterday afternoon, to try to cut medication dose in half, was an utter failure.

The good news is, this child was on a 48-hour heart monitor, so whatever the heart did or did not do during this episode, is now recorded, and will become known early next week when the test gets read.

We went to the orthodontist at noon, as that appointment has been rescheduled 3 times, due to medical events, and was now WAY overdue. I only earned a few eye rolls from my child when I insisted on caution at the speed the dentist chair reclined on was straightened back up afterward.

We also tried to go get my temporary orthotic for my toe, across town, only to find the staff left at noon today.

*sigh*

Otherwise, my child is now home for the day, as the school wouldn’t risk the liability of further attendance today, even though they have been feeling fine since half an hour after the incident.
Exciting times.
Yet we will praise Him!

What a lead in to the announcement I was typing up when the phone rang…

I’m launching a new community for my author page TODAY – facebook.com/groups/InDarknessSing – for all kinds of griefs and heartaches, like infertility, pregnancy / infant loss, death and bereavement, brain injury and stroke, chronic illness, marriage or parenting struggles, disappointment, disability, discouragement.

Please come check it out. I’m trying to grow my numbers really rapidly as publisher eyes are on this project. I hope to build a real place of support and encouragement where heavy hearts find hope in Jesus. Please spread the word!

On my PAGE, facebook.com/HarvestingHope, I try to gift you with near-daily inspirational content to uplift and encourage you. It’s my “give-out” page, yet I know it is hard to interact as a community here.

So today I invite my readers to a private GROUP where we can interact together and make friends. Please join me at facebook.com/groups/InDarknessSing and share this link with all your friends looking for a home of hope.

When you join, AND EACH TIME YOU SHARE THE LINK and leave a comment and link to your share, there on the group, I’ll enter you in a give-away! I’m planning to draw a gift winner ever 100 new likes over there. Share however you can: your blog, message boards, social media like Twitter, Pinterest, Facebook, even word of mouth (just have new members tag you, so I know to count your word of mouth share that led a new friend there).

Please be a Burden Bearer and help lift one anothers’ loads, as we strive together to sing praises to, and worship, our loving King, the LORD Jesus Christ, in the midst of our deepest struggles, and darkest trials. InDarknessSing is a community where my readers can joyfully fellowship and encourage one another through ongoing interaction.

Again

Our family is WAY too acquainted with Emergency Rooms, ambulances, hospitals, and medical tests! This is the third immediate family, overnight hospitalization, of 2018.

We were back in the ER Sunday night, after 3 closely-related medical crises in less than 24 hours, for one of our children. (If you know us personally, please don’t ask details or name names publicly, as kids get tired of being featured in my blog posts! Contact me privately if you have questions, please. I’m happy to talk details one-on-one.)

As we were being discharged after one o’clock Monday morning, the issue repeated, so discharge papers were changed to transfer papers and we took an ambulance ride across town, from our smaller satellite hospital, to the children’s hospital at our big, main branch (where I lived after my strokes).

There was serious talk of ambulance transport to the huge medical school children’s hospital hours away, but in the end, we came home late on Tuesday instead. We now have three local specialists lined up for appointments in the next week or two.

We started new medication Wednesday morning, and have now gone 44 hours without another event (7 major, and 3 more mild crises between Saturday night and Wednesday afternoon). We are praying this new medication prevents further events.

Three specific prayer requests are:

  1. Significant reduction in the severe nausea this medication is causing. (Side effect lists indicate it could resolve as we adjust to taking it.)
  2. Profound increase in thirst and ability to tolerate hydration. (Nausea is making it very hard to take in fluids.)
  3. Resolution of symptoms, allowing a safe return to school and outside activities, and ability to quickly get fully caught up with all missed assignments. (Missed this entire school week. As our kids, jr. high, high school, college, are getting older, a solid week of missed school, plus the additional classes that will be missed for follow-up care, is a pretty big deal.)

Our church has been beyond amazing. Several friends showed up in ER, bearing hugs and gifts. Then the next day of admission across town was a fairly steady stream of encouraging visitors. We feel loved and very blessed!

This child could hardly fit in the hospital bed that was so piled with cuddly comfort items. Even the nurses were amazed! I was awed by the boldness and maturity this kid exhibited in seizing the platform to boldly share Jesus with lots of hospital staff.

I am a tired Mommy.

God is good, all the time!

One Night…

What Does It Take?

One of my favorite things about writing a blog is that people introduce me to all kind of cool products. They do so in hopes that I’ll share them with you. Mind you, I am very picky about things I’ll actually share here.

I get way more  review requests, than hours have available to review. So, right out of the starting gate, I’m quite selective about offers I’m even willing to try. If I say I’m going to honestly review something, I’m going to commit the time to really exploring that product. My first consideration is deciding if it is something I feel meets my needs and could bless my readers.

If you are taking time to read what I write, you are placing a certain level of trust in the validity of my opinion. I value your trust! I don’t take your loyalty for granted. I never wish to compromise or minimize the confidence you place in my words.  Please know that I have your interests at heart, am treating you as a personal friend, when I tell you about something that makes me own life happier.

I ask myself if I feel a product world be worth spending my money on, in order to have it in my life or not? Encouraging you to get something that I’ve talked about here, will typically involve expense on your part, and I don’t take that idea lightly. (So, yes, I’m telling you about a product that has been supplied to me for free, in exchange for my honest reaction.)

This kind of careful evaluation takes time, so something has to really interest me to begin with, in order for me to be willing to invest that time.

What Do I Want To Share With You Today?

I signed up to review the ONE NIGHT advent story calendar for two reasons:

1. I love  entire season surrounding the celebration of Jesus coming to earth. #Christmas

2. I’m trying to cut way back on sweets. Is it even possible to replace the cheep cardboard countdowns I buy each year, with something that offers anything better than candy behind each door, while still keeping my kids excited?

(For the record, my young-adult son thinks ONE NIGHT is far superior to any advent calendar we have ever used, but suggests that I also buy giant chocolate bars and hand out individual squares to each person to enjoy while we are exploring that night’s continuation of the month-long story.)

Why?

We had passed the first test. I liked the premise of the product enough to want an in-person look.

Then a HUGE flat box showed up at my door. I wish I had thought to take a picture. Instead, I was too curious about the contents of this box to think to grab my camera. We excitedly opened our mystery parcel and were blown away by what we saw. No tiny, cheep cardboard with plastic windows here! 

Did I mention this thing is really big? Here it is pictured next to a pair of my shoes and a big Bible study dictionary. Oh, and that guy holding it in the first picture is about to turn 13. He’s on the rather larger side of the growth chart, for a boy his age range.

Better than candy, these flaps hold the greatest Story ever told. The Story progresses over 24 days, facts told through the fictionalized perspective of two shepherds who were watching sheep the night angels interrupted their evening to announce the birth of the King. Beautiful black and white, hand-drawn images lead the imagination through a detailed journey of wonder that holds true to time and culture.

I’m Impressed.

Solidly designed to last, this new part of our family’s Christmas tradition reminds me of a picture book. Here, let me give you a close-up of the book-like binding construction:

The Book of Luke (2:8-20) says that on the night of the first Christmas angels visited shepherds tending their flocks and told them to visit their newborn savior.  ONE NIGHT reimagines the story through the eyes of one of the shepherds.  

Set against the turbulent backdrop of ancient Judea under Roman rule, ONE NIGHT follows the shepherd as he risks his flock to journey through the countryside in search of the baby Messiah — and the elusive promises of worldly and spiritual redemption.

There is a long and diverse artistic tradition of imagining the story of the shepherds.  In our telling, we have tried to capture what it would have really been like to be there the night Jesus was born, and how a regular person might have tried to make sense of that extraordinary event.  The story is intense, exciting — and even a little spooky.  

It’s a feeling that’s echoed in the stunning visual art.  Rendered in the style of a classical draftsman, ONE NIGHT feels like an ancient document, full of timeless drama and mystery.

Whether you know the Bible inside out, or you haven’t read it since you were a kid, we hope ONE NIGHT will surprise and move you with its riveting portrayal of its characters’ search for goodness and a better world.

How YOU Can Help:

This exciting tool is NOT available to the general population for purchase YET. The author and artist want to produce them for distribution soon. YOU can help bring that mission into reality. Check out this video from their Kickstarter campaign.

Any pledge, even just $1, will help fund production! A gift of $30 or more will also earn YOU your own beautiful keepsake story calendar ($40 retail value) in time for use THIS December, 2018. (As  long as they get all the funding they need over the next month, as I suspect they likely will since they are well on their way and this is a worthy investment.)

Recap:

ONE NIGHT tells a story in 24 parts.  Each part of the story is hidden behind a numbered door (1 through 24) that you open to reveal an illustration and text.  You can open one door each day, from December 1 through December 24, counting down to Christmas.  Or you can binge-watch, by reading all 24 parts in one sitting, like an illustrated book.  

Printed on heavy-weight paper wrapped around millboard, ONE NIGHT is a sturdy, free-standing triptych that you can place on a mantle, table or windowsill as an amazing Christmas decoration.  You can also close the triptych and keep ONE NIGHT on your bookshelf or coffee table.   

 

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