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Calling All LifeWriters

If you are in northern Nevada, love Jesus, and have a passion to share him through the written word, please join us for tonight’s monthly LifeWriter meeting!

REMINDER!!!
Tonight is our first meeting of 2019.
LifeChurch MIDTOWN campus. 5:30.
This time we will be meeting in the children’s area since both the sanctuary and back office (where we typically meet) will be being used by other groups.

Words Stuck

It seems I write update posts for this blog, then life dramatically changes again before I get a chance to post.

Here are short highlights of things I wanted to tell you. I feel like I need to race to try to update with the basics.

  1. Our almost-16-year-old is now deaf.
  2. That happened 8 days ago, as I was at orientation for my new job that puts  me full-time (well, I only get paid for part-time, officially am volunteering every other hour she is on campus, but now have full access to staff locations and resources) at her school.
  3. After my first week, my one-on-one student and I have forged a workable truce. I respect he doesn’t want or “need” an aid and strive to give him some leeway. He respects that I have a job to do and will push back when he pushes too far. He has three times said “thank you” to things he initially resisted, and he has twice assured me to “not take it personally” because his resistance is toward the idea of having ANY aide, not anger at me individually. Between my strokes and our daughter’s journey, I feel for the emotions this young man is processing right now!
  4. By last period of Friday, he turned in the best assignment he had given one teacher all year, thanks to a series of 5-minute timers set on my phone and my continual encouragement to engage in the next thing. He is starting to see some of the benefits of how I can put him on a more-level playing field with peers, thus making his world a little easier.
  5. I’m EXHAUSTED! The latest I’ve gone to bed was 9, once this week, on a day I had also taken an after-school nap. Friday night I was in bed by 5:30 or 6! Most of the week it was around 8. My body is in physical in pain from mentally and physically pushing myself for over 7 hours each day. But I am excited to be making a difference in one child’s life, and ever-so-thankful to have such immediate access to my daughter when she needs me. And they are even paying me too!

To give today’s update, I borrow words from my sweet friend Joy DeKok, when she announced her breast cancer today:

I wasn’t sure I was going to share this just yet because sometimes life experiences are hard to talk about. And intimate…

That’s when the words get stuck in my throat…

In all of the uncertainties, I am surer of God than ever before. His Word. His love. His plan. His Goodness. This disease is changing so many things in our lives, but it has no power to change God – He is the same yesterday, today, and forever. He is the I AM.

No matter what – I believe in the One who is the Way, the Truth, and the Life!

Even when the words get stuck in my throat.

R. and I stayed home from work/school today. I am setting timers for every 15-20 minutes, all day long, to check in on her. I hold my breath as I approach her room, never knowing what I will find. I breathe a prayer of relief and praise when I find her conscious yet again. This is no fun!

My same sweet girl who has now had 37 documented faints and been seen in five different hospitals in three states, all within the past 4 1/2 months, just spent another two nights in a local pediatric ward. (She is up to 14 admission nights this fall/winter, between four facilities.) We have ridden so many ambulances and visited so many emergency rooms I can only count them by the stack of bills now. Of all the trips, this was probably our most physically and emotionally brutal stay. The staff were amazingly fantastic. It is her body continues to mystify doctors and is getting downright cruel in how that plays out.

Before you ask, yes we are investigating autoimmune, various forms of poisoning like lead or mold and other, bird- and animal-born illnesses, birth defects and genetic causes, and all of the most remote possibilities anyone can think of. So far nothing medically makes since. We now have four profound diagnoses at play, and even all together, there are symptoms that remain unaccounted for.

Though God is bringing some clarity as to what processes are unfolding, we are still clueless as to why they are happening, nor how to make anything better. By the week, sometimes by the day, she continues significant declines. Fainting. Hair loss. Blindness. Deafness. Now something that looks a lot like seizure, yet isn’t anything area doctors have seen before.

As you continue to pray for us, we are petitioning God to bring hidden things to light; give wisdom, clarity, inspiration, and insight to our care teams; clearly direct our steps by opening and closing doors; peace and His joy through the process; physical and emotional comfort and release from fear for our whole family, especially R.; and ultimate healing from the Great Physician and Wonderful Counselor, in His way, His will, His timing.

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. So then, death is at work in us, but life is at work in you.
– 2 Corinthians 4:8-12 (NIV)

God has worked so mightily in my heart since I first looked at 2 Cor. 4 after my strokes!

He did this so that all the peoples of the earth might know that the hand of the LORD is powerful and so that you might always fear the LORD your God. – Joshua 4:24

For he wounds, but he also binds up; he injures, but his hands also heal. – Job 5:18

In his hand is the life of every creature and the breath of all mankind.- Job 12:10

Save us and help us with your right hand, that those you love may be delivered. –  Psalm 108:6

The works of his hands are faithful and just; all his precepts are trustworthy. – Psalm 111:7

Your hands made me and formed me; give me understanding to learn your commands. – Psalm 119:73

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. –  Isaiah 41:10

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. – 1 Peter 5:6

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!

Service Dogs

Last weekend we met with a women from our church who, for half of her life, has dealt with similar fainting issues  to our daughter’s (recap in next paragraph). R. has a service dog to detect her coming faints and give her time to get safe before loosing consciousness. We visited R.’s house for about two hours. Half an hour after we got there, the dog got frantic and rushed up to our girl, licking her face incessantly. Within a minute of this sustained behavior, our girl fainted! It was astounding watching this dog exhibit her God-given perception to know our daughter was about to go down!

Our 15-year-old has fainted about 30 times in the past three months. We are headed to another out-of-state hospital in a few weeks and could be there anywhere from about 3 days to 3 weeks. We have a theory, but are headed to a top autonomic specialist to try and get this officially figured out, since, so far, she has been through three local hospitals plus two really large research hospitals in the next state over, all without clear answers nor help.

If God wills to open a HUGE door that only He could, we also desire to take our 19-year-old for evaluation by the same doctor. Our son too has been quite ill over the past month, unable to attend almost any school, needing to resign from his job, and so fatigued he is unable to walk from bedroom to kitchen or drive half a mile! We are working with the hospital to try to get a last-minute cancellation spot, but know that the flight itself has the potential to further damage his health, so we are asking God to do what is very best and safest for him.

We’ve spent the week researching various kinds of service dogs, along with the added twist of severe dog allergies throughout the family.

We think we have narrowed down our preferred dog breed to one of a few kinds of Doodles (half Poodles). We are looking for a medium, or standard (huge) size, to be able to physically protect our girl. And the dog needs to be 2nd generation (grandparents are one dog such as a Retriever and one Poodle, while it seem that parents are Both 1st generation Doodles or a Doodle and a Poodle).

Thanks pixabay.com/en/labradoodle-doodle-dog-dog-park-1696004/

Poodles are hypo-allergenic (because they have hair rather than fur and shed little) and are highly intelligent dogs. In and of themselves, Poodles don’t tend to be easily trained, thus aren’t the best candidates as service dogs.

Mixed with a Golden Retriever (for a Golden Doodle), a Labrador Retriever (Labradoodle), or any one of several other breeds, these half Poodles maintain high intelligence levels, while taking on the traits of easy train-ability found in their Retriever parents. Doodles make ideal service dog candidates and, by second generation (some breeds of Doodle, bred back with Poodle), become hypo-allergenic.

No Guarantee

Faint-detection cannot be taught or trained. A dog either has it or it doesn’t. In our single week of research, it seems that of these “ideal candidate” Doodle dogs, only an estimated 25%-40% are born with an innate ability to warn of a pending medical event. Most studies seems to have been done on seizure- or diabetic-detection dogs. Syncope (fainting)-detection dogs, through formal services, take 2-4 years and between $20,00-50,000, to obtain.

Because we really can’t afford to wait for (or the cost of) a formally certified dog, we are visiting humane shelters, pounds, and pet stores. The dog that literally has been a life-saver to our new friend R., who knew when Ruth was about to faint, was from the humane society!

Yesterday we spent half an hour in a pet store with a 2nd generation Labradoodle puppy that was adorable, but when Ruth fainted (pretty much a daily occurrence right now) there, it did nothing dramatic to clearly indicate a coming faint, so we will keep looking. Perhaps the dog was too young to differentiate spastic puppy behavior from faint-alert. Before we spend $3,000 on a designer dog, we have got to know it can identify her faints!

Once we find that dog, we can start the lengthy and pricey process of formal certification training that would allow her to take him in public places like her school. Even having a dog like this just in our home will be a huge blessing, but once service training is initiated and the dog can accompany her everywhere, we hope to significantly cut down on faint-related injuries (seven Emergency Rooms, with five ambulance rides, since this all stated just 3 1/2 months back).

 

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!

Hospital Blankets Make Great Tree Skirts

I have started volunteering at our daughter’s high school each day and staying on campus for the entire seven hours. (Her school staff has been AMAZINGly supportive through this crazy medical journey!)

Writing is, by default, taking a sideline in my life for a bit. I am, however, over-the-moon to announce that Deb Gruelle and I will be team-teaching a workshop at Mount Hermon in April. I will also be leading a course entitled Praise, Worship, Jubilee! as we celebrate the 50th anniversary of this conference. If you have ever dreamed of writing, I so hope you will join us.

Life is crazy, but we do have a pre-lit Christmas tree up. My hubby and youngest set it up as a surprise one Saturday in early November.  I don’t have the time, energy, nor gumption to decorate it this year, so my husband bought 4 dozen candy canes and our 12-year-old had fun hanging them while he was home sick one day last week.

For a tree skirt, the white blankets they sent home wrapped around our girl during her latest ER trip (we are now at 6 ER visits, several via ambulance, in the past 2 1/2 months) made a lovely addition. Setting out our new Advent Calendar next to the tree will probably be the extent of this year’s decoration.

Her medical record says she “pulled her hair out,” but I can testify she lost half of her hair volume (in patches as large as 4×6 inches, as well as in showers of individual strands), all within 36 hours. She was not pulling it!

We shaved her down to a tiny fuzz of hair, since what she had left was so patchy and stringy. Just a month later she went into the shower with hair and came out with a dozen new bald patches! Since her hair was not really even long enough to grab that second time, she couldn’t have pulled it out if she wanted to.

We are waiting to see an autonomic specialist at a major hospital in Arizona, and hope to find answers there. We have January appointment currently scheduled. A large chunk of my daily time is spent in multiple calls to this clinic, waiting on hold, trying to find out if any new cancellation slots have become available over the past two hours, in hopes of getting to fly down to be seen before Christmas.

We are tired.

Yesterday’s advent reading greatly blessed my heart. It is perfect for my reader-friends in our In Darkness Sing community:

“The people who walked in darkness have seen a great light; those who dwelt in a land of deep darkness, on them has light shone.”
Isaiah 9:2 (ESV)

It isn’t about the frills of Christmas. When you strip joy down to the most basic of elements, this season is about the Hope brought to earth by One Baby.

 

 

 

Crisis Amidst Crisis

If you’ve been following along on our 15-year-old’s medical saga of the past two months, you know things are rather crazy in our home. I’m sad to say that this faint-free spell only lasted a week. We’ve had code blue calls from her school the past two days in a row again.

Our nerves are so tightly strung that the phone can’t ring or a door open without us physically jumping, every muscle tightly wound, ready to respond to the next medical crisis. Rick called to say, “I love you,” yesterday, and instead of answering the phone with my typical “Hi Handsome,” I saw his number on the screen and grabbed it with a panicked, “Is everything OK?” God is the anchor we are clinging to, but this is HARD!

Cast all your anxiety on him because he cares for you.

While our 18-year-old was driving our girl and me to her doctor yesterday, our son nearly had to pull over the car because of sudden, rather intense chest pain and trouble breathing. He got us safely to her doctor, I called my mom to come take over with R., then I rode along with J. who was able to drive himself to urgent care two blocks away. A breathing treatment did wonders and our oldest is now carrying an asthma inhaler. So thankful this medical issue was quickly addressed and had a cut and dry solution!

When anxiety was great within me, your consolation brought me joy.

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)

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