Miracle

Our daughter got both sight (blind since late September) and hearing (deaf for the past month, since January 14) back around 4:30 this morning (Feb 18). Not even a week ago I was sharing how we have been praying for this!

She yawned and her “ears popped” and her “eyes popped”.

The eyesight is still a bit dim (and quite blurry, but she has worn glasses since second grade and her glasses prescription seems to have significantly changed again). We don’t know if her scenes will fade again or not.

But the massive migraine that happened in conjunction with restored sight/hearing gives us a major new clue.

Praise the Lord!

It’s been an eventful day. I really haven’t slept much in the past 13 1/2 hours since R. burst into our room!

I also started with a new physical therapist who is both chiropractic stroke- and EDS-literate (he has EDS himself!) this morning. MyPT intake interview lasted an hour and a half. Boyd was SO KIND and GENTLE and ENCOURAGING.

He warned me I would feel run over by a truck the rest of the day, and I do. He hardly even touched anywhere other than my shoulder, mostly just coaching me on proper head and neck and eye movements to address stroke deficits, yet I was so dizzy and sore by the time my hubby drove me home, my teeth hurt! Yet I am looking forward to going back Friday. I anticipate huge help as a result of this new partnership.

The most encouraging words he said to me was that I was “so brave” coming to him to help with physical therapy for my severe post-stroke neck pain, after what I endured seven years ago on a very similar looking table. Having the reasonableness of PTSD acknowledged in that situation helped so much. Just a year ago, I wouldn’t have been able to emotionally tolerate the kind of physical therapy I so need, and finally pursued today.

Towel

My daughter went blind and deaf this past fall. It is a steep learning curve for our entire entire family to figure out how to operate under this new reality.

Doctors say her sensory loses should be “temporary,” but no one knows what that means. We are past both “days” and “weeks” and are hoping for resolution in “months” rather than “years.”

In the midst of this huge unknown, we press on to forge a new normal within these parameters. One interesting experience has been cleaning.
We are trying to give R as much adult-like freedom as possible, so we allow her fairly unlimited use of the kitchen. We strive to hang back and just stay ready to jump in to help prevent injuries, watching intensely when fire or sharp objects are involved.

Bless her heart, our girl truly does try hard to fully clean up her messes. But I am currently spending 2-3 hours every 4 or 5 days, deep cleaning all she has missed because she could not see, nor hear verbal instruction about messes.

When I try to explain what R is missing, there are many tears, usually some anger, and we have to wrestle through self worth and belief that she feels we don’t think she is “good enough.” We had a long “chat” (in addition to hand-spelling everything, a friend recently discovered she can feel word vibration patterns through bone conducting head phones, with a fair level of accuracy when we speak slow and concise, so we can now use the telephone as another tool) last night, so hopefully the kitchen will get easier on both of us! It is so hard to express what needs to happen without hurting her in the process!

Since going blind, yellow has become R’s favorite color. In her memory, her mind’s eye, it is “the color of happiness.” She asks the color of nearly every object she encounters, and if something is yellow, she is delighted.
She was given some lemony yellow towels for her 16th birthday last month. They are a very light in shade, like butter, but bright in intensity, like sunshine.

Towels

Within a couple of weeks, her new towels were stained with streaks of black eyeliner, all colors of eye shadow, flesh-toned makeup, and more. I tried not to let it bother me, but it made me very sad.

So I said many prayers and dug out every stain treatment product buried in the dark recesses of my laundry room cupboards. While I did discuss using clean towels only on already fully clean bodies, I decided this specific issue did not need to turn into a confrontation that would make her feel inadequate. I quietly set to work, hopeful that I could at least improve all but her washcloth (that seems utterly unrecoverable).

After much effort, her entire set of bath towel, hand towel, and even wash cloth now are stain-free and look brand new again. R never need know what her inability to detect towel stains truly costs me.

It is that way with God. There are times His gentle corrections hurt and feel suffocating, leaving us feeling less than. We are doing our best yet feel like all those “shall nots” that trip us up are only meant to tear us down.
What we cannot see is all we are spiritually blinded toward, ignorant about. We do not know all the times and ways God is working behind the scenes to accomplish our freedom.

Right now we see darkly [reference] but one day our joy will be complete as we see Jesus in all His glory. Just as I will delight in fighting to keep those towels looking new until R can see them for herself for the first time, our LORD takes great measures to bring us good gifts [reference].

What’s Eating You Up Inside?

I wore my favorite red high- necked sweater. Over the sweater I wore a beautiful, large crystal-cut heart necklace. Under my sweater, unseen by anyone, I wore a second heart necklace, one of solid metal and inscribed with the words of John 15:13, “Greater love has no one than this, that he lay down his life for his friends.”

We started by talking about thoughts that came to mind when hearing the words “consume” or “consumed”. Answers varied from eating and drinking, to living in a “consumer-driven” society where we practice “consumerism” of material goods. I then asked for input about what kinds of things we can be consumed by or that consumes us. The first answer was “fire,” followed by more of an understanding of what I was getting at: all-consuming goals, passions, ideas, anger, fear, etc.

I then pointed to my crystal necklace and talked about the ways we can strive to look beautiful on the outside and reflect a good image to the world around us, just like the facets on this necklace reflect beautiful colors and light. To look at most of us you might think that we “have it all together.” But if I take off my necklace (as I did while saying these words) and hold it off by itself, we can see that all that beauty is just outward and that inside there is nothing there but plain glass. Sometime what we portray to the world is simply a disguise for the fragile emptiness we are feeling inside.

We all have different heartaches. Yours may be longing for someone to love or be loved by. It may be seeking fulfillment in an unfulfilling job. It might be trying to make your body look differently than it does in order to fill that void in you heart. For me it was a combination of infertility and losses, along with chronic health issues, that lead me to the point of desperation and even contemplating suicide. No one could see that lonely emptiness inside, but I knew it was there. I was consumed by the pursuit of motherhood and my feelings of failure as a woman because I couldn’t get there. The heartache and grief consumed me every day and I felt abandoned by God because it seemed that He didn’t even care.

Many of us know the verse John 3:16, “For God so loved the world that He gave His only begotten Son, that whosoever believes in Him should not perish but have everlasting life.” God made this verse very personal to me in the midst of infertility when I realized that “God so long to call me His daughter that He allowed the death of His only biological son to pay the price of my adoption.”

Thankfully, how I may “feel” about God doesn’t dictate reality. Lamentations chapter 3 is a long book of heartache about all the things this author suffered. But hidden right in the midst of his complaints, he dramatically shifts gears for a few verses and boldly proclaims, “Yet this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail.”

While I was busy feeling overlooked by Him, He had already been going out of His way to prove the opposite to me. What is the value of something? It isn’t the cost of an item as much as it is what someone is really willing to pay. There are many things I don’t buy because the price tag is higher than I feel the value to be. But God placed the ultimate value on me when He choose to pay the price of His Son’s life to prove His love for me!

If you are feeling empty and fragile and wondering about God’s love for you, He has proved it better than any knight in shining armor ever could. John 15:13 is engraved on this necklace (as I pull the second necklace out of its hiding place and let it rest outside my sweater) and states that “Greater love has no one than this, that he lay down his life for his friends.” Just like this necklace is strong and solid and full of meaning, when I put my hope in God and trust Him at His word even when I don’t “feel” Him there, He fills that empty place in my heart with hope.

” Yet this I call to mind
and therefore I have hope:
Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness…
For men are not cast off
by the Lord forever.
Though he brings grief, he will show compassion,
so great is his unfailing love.“

-Lamentations3:21-23, 3:31-32 (NIV)

(c) Jennifer Saake, 2009

DeafBlind Communication

I’ve been repeatedly asked how we are communicating with our daughter through the combination of blindness and deafness. I’m actually finding an amazing number of resources, but being less than two weeks into our experience, we are just in the very initial stages of finding what works for us. I honestly don’t yet know much about how other people cope with dual sensory loss, but here is what we are doing so far.

I learned Sign Language in high school and college. As I taught my kids the alphabet, I taught them their manual letters, so they have each known how to finger-spell since before kindergarten.

It is slow and tedious as an only form of communication. Like texting, when left without tone of voice, facial expression, nor body language clues, mixed with STRESSED parents and teen hormones and mood swings, we (all of us) have tears many times each day, from misunderstandings, hurt feelings, and frustration.

It is hard, but we are so thankful to still have this bridge into our daughter’s world by spelling one letter at a time into her hands! I keep reminding myself of how Helen Keller started, without the verbal and visual background R. can still access in her memories, and I know God will bring our girl through this storm.

Because she can pick up vibrations, we have also established some family codes, like I’ll walk into her room and knock on the wooden frame of the bed she is in – tap 1, 1-2, 1-2-3 in quick secession – to say, “I love you!” When we need to get her attention fast, like alert her she is about to be in danger, the whole family starts banging on walls and stomping hard on the floor – occasionally she will feel the vibrations in time to freeze so she doesn’t trip over something in her path. (Edited to add that today we had a big scare when she walked two car lengths farther than I had directed her to do and walked out into an open parking lot during the busy time of after school pick up.)

Exploring YouTube, I found a few fascinating deafblind videos. Here is one where two friend help their friend experience a world cup game. This video  explains the basics of the development of Pro-Tactile ASL (American Sign Language) by the deafblind community.

Nation Center of Deaf-Blindness

American Association of the DeafBlind

National Family Association for the DeafBlind

Helen Keller National Center

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!

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