In The ZONE

Our daughter wants this to remain a big surprise for her friends, so if you know anyone (even your own student!) in the McDowell youth group, please keep this news hush-hush for a few more weeks…

In 5 days, Rick and I will be flying down to Ar-i-ZONE-a on a house hunting mission. Yes, we are moving. We don’t know how long it will take to close escrow on the new house, but we are madly packing in order to be ready as soon as it does. R.’s goal is to simply show up down there and see friends’ reactions.

We have counted 40 unique faint-like events in the 28 days R. and I have been back from AZ…

…even though her elevation medication has been upped to 8 times the dose that brought us 9 glorious days of stability in March. Upon returning to elevation, my own asthma (that was quiet all summer) and tachycardia / POTS (that have been well controlled for over a decade) have been haywire!

We have tried HARD to stay in Reno. God has made it clear, repeatedly, that He has a new season in store for us near Phoenix. I like to think of this new chapter in our lives as our “up from the ashes” season of hope, joy, and restoration.

We are exactly two weeks out from being a full one year since that first school phone call when R.’s elevation-induced fainting started.

Even with a 2-month break down in AZ over the summer, we have now documented 125 events this past year. (Likely many more than that, as we were initially not recording drop episodes, having no idea how much of a “thing” they would become!) We have only learned in recent months that she also often faints while already asleep, so we have no way to know what her true number of events have been this year – I imagine she is likely somewhere nearer to 300.

We are excited to be moving near several world-class medical facilities that will be available to 16-year-old R., to myself with ongoing post-stroke follow-up needs, for our 19-year old who will be flying down with grandparents again to see more doctors, in between our house hunt and move, and simply for great day-to-day care for Rick and our, thankfully, healthy 13-year-old.

We are blessed to have already found the church home where we have been plugging in every time we’ve flown down to Mayo Clinic. R. has been enjoying the youth group on every visit we’ve made to AZ since January, and has already applied to serve on the student leadership team there for this school year. I spent the summer meeting weekly with the prayer team. We were both blessed to join the youth group for summer camp in July.

Prayer Needs:

Rick and I are asking God’s favor on our trip next weekend, that He will lead us to the exact right house, in the best location to accomplish His purposes in our move, at a fair price we can reasonably afford. We are specifically praying for neighbors and school district, along with specific needs (and some wants) for each family member.  Also that the timing of our offer will work out perfectly (the housing market is insane down there, and buyer competition fierce) and that the current owner would be inclined to favor and bless us in the transaction.

Both sets of our parents live here (mine 5 minutes away, his 1 hour). We’ve been in this house almost 15 years now. Little J. has never moved before, R. and older J. have only moved houses once, right here within Reno. Rick has lived outside of a 2 1/2-hour radius of his parents’ house only during his college years. After a lifetime as an MK (missionary kid) moving, often across international oceans, about every 2 years of my entire childhood, this is my first home with deep “roots” that have been established in the Reno community for nearing 22 years. We all need your prayers as we find our new fits in a new state!

Let’s Help Each Other!

If you are local to northern NV and want to get together before we move, please come help pack a box or two so that we have a chance to visit! Also, if you are looking for an antique piano, outdoor playhouse and slide, dressers, or other furniture, we can likely fix you up (for free).

Our current house is listed on Zillow, in case you know of any family that needs a single-story house with 4 bedrooms plus a den (currently being used as a 5th bedroom, but no built-in closet) and 3 1/2 baths, in south Reno (Curti Ranch). We would love to talk with you and receive offers before we list with a realtor, as maybe we can save us both some money by eliminating those fees. 🙂 This is a unique all-on-one-level home that we will be very sad to leave. We’ve invested so much time and love and made some amazing upgrades like wood plank-look tile flooring throughout the kitchen / family great room, and reclaimed 1800s barn wood beams used to build the mantel of our custom fireplace. Finding a comparable replacement for this home will be very hard!

 

Nearly Four Weeks Since Her Last Faint!

Tomorrow night will mark four weeks since 16-year-old R’s last fainting episode. Since that faint was number 31 in 20 days and 4 hours, we got her on an airplane and down to lower altitude. We have been staying near two major medical institutions (where her health has been being addressed by multiple kinds of world-leading specialists).

We are making medical strides on a weekly, sometimes daily, basis! The more than gets calmed down, the more underlying layers become evident. There is still much work to accomplish here.

The hope in giving her body a full 60-day reprieve from altitude, while simultaneously addressing a host of underlying triggers that are pushed over tolerance levels by elevation, is that we will be able to permanently return home at the end of summer and that her health remains stable there.

We have had days here with as many as four medical appointments in a single day, and weeks with anywhere from two to five appointment days in the week. However, as a stroke survivor and a teenager alone together in a state where we had met no one prior to January, we are also striving to approach this trip with as much of a “vacation mindset” as possible. The fact that R remains faint-free is helping that goal immensely!

Since neither of us has a driver’s license, we’ve gotten really good at RideShare services, shuttles, and walking much further (pushing my pretty pink walker, Bubbles) than either of us are used to. We have a great church home-away-from-home that we’ve managed to visit three of our four trips down here in since we started these trips in January.

The youth group has included R in all their events and welcomes her to participate in much summer fun.  We’ve enjoyed cooking and art offerings at the local libraries, weekly classes at a community center, are in our community pool about four times a week, and are taking one “big” special memory-making outing per week. This week we’ll get trained to volunteer at the local animal shelter.

Our first week here was rough, between excessive heat, bugs, and a major issue with the former tenant, all without knowing folks or having much of a support system yet. Now we’ve somewhat acclimated to the temperatures, made lots of medical progress, gained a few friends, become more confident in our own abilities, more knowledgeable of our resources, and settled into more of a routine.

We’ve done girly things to redeem the years my strokes stole from us, like manicures, pedicures, home facials, and hair coloring. We’ve selected beautiful mother/daughter rings.  We’ve taken “mermaid swimming lessons” (complete with fins and tails – I can’t initially get pictures to upload, but I’m trying), and we went indoor sky diving – both were less terrifying but more physically demanding than I had anticipated.

R was the “rock star” (flight instructor’s words) of the mermaid and skydiving classes, while I made excessively modified attempts at each and my body demanded I sit much of the activities out. I was amazing to sit back and watch R thrive though. She’s nearly always smiling, but after past few years she has endured, truly living is a beautiful thing to witness happening in our girl’s world!

I am so glad R wanted to learn how to make “raw lasagna” this week. This free author presentation at the library was actually one of my favorite activities down here, so far. I was capable of many of the skill required, and the results were easy, delicious, and beautiful. Because of all our time in swimming pools, I also just re-learned to do in-water somersaults, something I’ve done since my earliest childhood memories, but had not been able to master since my strokes, coming up on 8 years this fall.

I don’t know why pictures aren’t uploading from the road, but I wanted to get you an update before more time passed. I have successfully added a few pictures with this post’s link (June 22, 2019) on my Facebook page, Harvesting Hope from Heartache, if you wish to view them there. (I would be delighted if you “like” the page while you are there too. Thanks!)

31 in 21

All our family lives here. Two decades of friendships are here. Our amazing church family is here. We know the schools and the medical system.

However, we are hopping on another airplane first thing in the morning. Rick will escort us to another state where R. and I will spend 60 days to learn the reality of longer-term impact of lower altitude on her body. We will see a half dozen different specialty doctors while there.

We will give the trip everything we’ve got. We will fight to successfully return home at summer’s end. We should learn if a two-month reprieve was enough to reset her body, allowing us to continue to live in the only home she has ever known.

The past three weeks have been tough, with 31 drop-episodes (faint-like events) in 20 days and a few hours. Our immediate hope is that tomorrow’s geographic change will put a dramatic stop to the faints. Our long-term dream is that the impact will be lasting once we return to altitude in late July.

Prayer Needs:

Please pray for 16-year-old R. as we seek God’s continued grace and provision of answers as we strive for her health.

Please pray for me as I “single parent” in a strange place without my support team (or a driver’s license).

Please pray for Rick and our boys J. (19) an J. (13) as our family is divided for two months.

Please pray for wisdom for our doctors and very clear future direction.

Jesus Help!

What a week.

After an amazingly “stable” (for us) month with very few drop episodes (faints), we are in a storm! R. was 12-days episode-free when she went down Monday afternoon, the first of eight document-able drops in these past 4 1/2 days.

We’ve been in one ambulance, and two emergency rooms, for her. My baby girl (age 16) got poked and prodded with 10 needles over two days, just to get one tiny blood sample and run a single liter of fluids. (More tiny needles too, because EMTs always do a finger prick to verify stable blood sugars, but those are nothing like the 7 failed IV attempts!)

We managed to create emergency code calls at school every day we attended school this week. The one day we didn’t go to school, we visited the hospital for a planned procedure, and she passed out in the food court there, creating a hospital code call with six emergency responders immediately jumping into action.

The school also had to call an ambulance for me on Monday after her first event. (I couldn’t find her when the emergency announcement went out Monday, so ended up “running” – if you could call it that in my post-stroke condition – down five different long school hallways before I got to her.) I spent three hours in urgent care, had a steroid shot, two breathing treatments, and am now on a week of home Prednisone and a shiny new inhaler, for exercise-induced brochio constriction. God has been gracious in allowing me to be there for R. all week, in spite of steroids that typically are emotionally crippling, and ongoing asthma attacks.

What we are thankful for today:

1. R. can still see.

2. R. can still hear.

3. R. continues to wake up.
Fifty-eight times over the past 8 months and 3 days, she’s gone down, but regained awareness within an hour and a half or less (sometimes in as little as seconds, often within minutes) each time.
Every time we see those beautiful brown eyes flutter open, or hear her tired and frustrated “Hi,” upon comprehension of what has happened again, I breathe a prayer of relief and utter thanks.
Every. Single. Time.

Prayer needs:

1. This situation is progressing. We have some of the very best doctors in the world currently trying to crack the mystery. God already KNOWS exactly every detail of what and why. He can bring hidden things to light. In a word, He can heal.

2. R. is a trooper, but she is hurting.
This is a brilliant, talented, funny, amazing young lady, who no longer is allowed independence to even shower or use the restroom alone (as she has gone down doing both). Driving, preforming, babysitting, summer camp, pretty much any normal teen activity, is totally out of question right now.
Our historically straight-A student has missed so much school this year, that school administration and teachers are working creatively to help her even earn high enough grades to even qualify for course credits so that we can count some of her sophomore studies toward graduation requirements.
Physically, she has a migraine headache that has not dropped below a 4 pain threshold (often much higher) since February 18.
She is utterly discouraged, embarrassed, and overwhelmed, in addition to the terrifying unknown and bodily suffering.

3. Our entire family is feeling hard pressed. R’s bothers (19, 13) are watching their sister get worse and worse. We all are feeling helpless, are fighting hopelessness. It is scary and confusing.
Our oldest has his own mystery medical struggles that have kept him primarily bed-bound since last fall. While the battle isn’t as intense, it is a continual struggle, without many more answers for J. than R.
Rick and I feel at such loss for the next steps God would have us take. In one sense, our marriage has been driven closer than ever, as we cling to each other at the foot of the cross. In other ways, the pressure on our marriage is so incredibly intense and we struggle in many ways!

“Restore” has been my word for this season. It is my heart’s cry. Would you please join us in praying for this?

Fifty

Jennifer Saake Mount Hermon Christian Writers Conference, 2019

Birds sing more on cloudy days! From a 1960 picture book called “Why Do Birds Sing?”

This week we documented R.’s 5oth drop episode (faint) in the past 7 1/2 months. As bad as that sounds, things are getting far better, episodes are getting shorter, farther apart, and less consistent. We have a great (and growing) team of amazing doctors, in three states, who are now working together, fighting for and with us. R.’s eyesight is dramatically and rapidly improving, and we believe we are getting close to a better balance between her combination of multiple medications. Thank You, Lord!

A specific prayer request is for God to clearly lead and open and close doors in His way, His timing, concerning some ordered testing for both R. and 19-year-old son J., and another upcoming medical trip. The tests need to happen before the trip, but right now that scheduling isn’t looking possible, so we either need both kids to get quick cancellation spots (seems the ideal, yet more impossible option, from our perspective), or we need to delay the trip (not at all our preference).

#migraine #cerebellum #PosturalOrthostaticTachycardSyndrome #POTS #EhlersDanlosSyndrome #ConnectiveTissueDisorder #CollegenDisorder #EDS #hypoxia #altitude

More 50s

This isn’t the only “50” in my life. Over Palm Sunday weekend, I had the dream-of-a-lifetime honor of serving as a faculty member at the fiftieth anniversary of the Mount Hermon Christian Writer’s Conference.

Tree Tops

At this conference in the awe-inspiring California Redwoods, I got to teach a workshop entitled Praise, Worship, Jubilee! (notes to be posted under my writing link soon) about the 50-year-cycle God established when the Israelites entered the Promised Land after the Exodus.

I was also blessed to get to co-lead a workshop on critique  groups with one of my dearest friends, Deb Gruelle. We spent three days together before going over to conference, doing lots of resting plus workshop planning. There we spent nearly a week as roommates, learning, laughing, and soaking in the joy of being with 300 other Jesus-loving word nerds.

Tree Midsection. Base of branches to top of nearby street lamp.

I have been excited about and planning (even packing!) for my Mount Hermon trip for two years. On multiple occasions, I seriously considered canceling, even within the final week before I left, due to R.’s health. Months ago, before things got really bad or I had any idea of how long this storm would last, our daughter made me promise I would still go “even if I’m in the hospital at that time.”

Base of Trees

Why I Went

Just nine days before going, R. and I were flying home from two weeks out-of-state for another hospital. I went because I felt unshakable conviction that I needed to go  – I did not have peace from the Lord NOT to go, so at my times of greatest doubt, it became an obedience issue to Him. I also went because I knew it would shatter my daughter’s dream to see me give up mine. With incredible support from my husband Rick and my extended family, I went in R.’s honor.

See that far-off grove of trees in the middle? They are the same ones it took me three close up shots to post here. For scale, the little black dot at the upper end of the left path, is a full grown adult person!

Though R. had 3 significant medical events during the ten days I was away from home, including two phone calls where people on scene called me in California to coordinate emergency care, rather than reaching out to Rick or my mom here in town, as had been the pre-arranged plan, I was undergirded by the Lord with incredible peace all week. I so needed the mental and emotional reprieve from the daily grind of full-time care giving, and I gained so much  from that week spiritually, and in means of writing career learning!

Blessings

Hours were spent with countless writers who took time to pray with me for my family. Sweet fellowship included multiple late-night talks with one precious bereaved mom who had been through much of the same medical roller coaster we are riding right now, including trips to hospitals all across the country. DeeDee poured over lab results with me, talked doctor and facility options, and fought passionately by my side by giving me her hard-earned ideas of what to do and what to avoid, in order to keep my daughter alive.

DeeDee’s K. was born 2 1/2 months before R. Our girls share a common underlying condition that led to her daughter’s fatal complications a little over a year ago. As you think of DeeDee, please keep this precious woman and her family in your prayers. As hard as R.’s journey is for us, our pain is nothing like what it is like for these two precious parents and two younger siblings to go on without K!

Fear

Because of a joke I made to my husband two years ago, and his serious reply, I have spent well over a year mentally, physically (with physical therapy), and emotionally training for the Mount Hermon ropes course. One area of my brain severely impacted by my strokes was my balance center. Walking past a landing with three of four stairs below makes me feel like I’m falling.

By God’s grace I did eight (well successfully did seven, and had to tush-scoot across the eighth, then get rescued by a pull lift attached to my harness to get off) elements (obstacles) at 1- 30- and 60- feet off the ground, two zip lines, and an 80-foot bungee jump. I was slow, I got myself utterly stuck that one time because I didn’t have the physical strength to manage, and I had a full blown panic attack at 3am the day of the scheduled adventure, but I can now say I’ve done it.

Thank you for the custom butterfly and Rose, Tee and facebook.com/WoodburningByGeorge !

Every Thought Captive

That one element where I got stuck was physically more than I could handle, but the battle was mostly an emotional one. I basically said a Bible verse out loud for each step I took. It took me a good 5 minutes, with three people checking my safety equipment, before I said, “OK God, this is a literal leap of faith!” closed my eyes, and stepped off the platform 60-feet in the air, for that first zip line.

Ropes teammate, sweet children’s author Rondi DeBoer.

The second zip line and the bungee jump from 80-feet, each only took about 2 minutes, and one extra safety check. Take THAT strokes! (Kathy, yes I do PT so that I can do life!) My only injury of the day was a stubbed toe! My physical therapist is astounded I came home in such great shape.

The next morning at breakfast, it was announced that an anonymous “Jennifer Saake Badge of Courage” donation of $5,000 was being made to Mount Hermon because of the battle that God carried me through. Amazing! Thank you to all my friends who did the course with me, cheered me on over the course of the exhausting two and a half hour even, and to the generous donor(s).

www.laurachristianson.com/laura/

I’ve worked with Laura Christianson for over 2 decades, but finally got to hug her in person for the very first time this month! I also was encouraged by her smiling face sitting on a bench directly in my field of vision, while I was stuck on that 8th element.

Coming Home

When I flew home from conference a week ago Tuesday, I had about 75 minutes to repack, grab medicine refills, sign school papers, and hug my boys. When Rick walked in the door from a long day at work, we loaded R. in the car and did 11 hours of driving, several hours at a children’s hospital (in response to one of those injuries while I was at conference), and managed a few hours sleep, all within the next 23 hours. Rick made it to work on Thursday, while Ruth and I both slept most of the day, returning to school on Friday.

I’ve never been a “staff member of the month” before!

After being away from work for a month (2-week medical trip, school closed for spring break, 10 days of Mount Hermon travel, a whirlwind emergency trip, a day of “playing hookie”), returning to school was a bit of a culture shock for me. I returned to some tough issues that made me feel like giving up. Then I was surprised by this (pictured —> ) encouragement…

I signed an “intent to return” form this week, very thankful God has provided a way for me to be physically present at R.’s school AND actually be making a difference there for the school community. While I am very tired, I am in awe that my physical health is sustaining (and even continuing to improve!) and am thankful that my medication that was threatened to be dropped last week has been renewed for another year. Please pray that I can mentally and physically better learn to manage work, health, home, family, and writing, while keeping my relationship with Jesus my very top priority.

Update on Our Kids

What an eventful month!

Daughter:

Our 16-year-old and I spent two weeks in Arizona, five days of that as a hospital inpatient, three days doing daily hospital pain IV infusions on an outpatient basis, and a bunch of time running from one outpatient specialist to the next. We left with a long explanation of the “perfect storm” of exceedingly rare conditions and circumstances that piled upon one another to cause our past six months of terrifying medical issues.

Why?

In short, R has a “spot” in her brain that is stable, non-aggressive, and has likely been there for years (possibly since birth). As her body has grown and changed, the migraines she had had at least since toddler-hood, have been exacerbated by altitude, so when she started regular drop episodes (faints) in September, this was actually a very rare migraine complication!

In fact, every one of her symptoms, up through temporary (minutes-hours) deafness and blindness can be accounted for by migraine, according to her neurologist at a major medical center. The migraines have messed havoc with her autonomic system, so the prior diagnoses of POTS and autonomic nephropathy stand, we just finally can add the “why” behind these diagnoses.

What Else?

That brings us around to elevation. We only live at 4,700 feet above sea level, not like Denver, the “Mile High City” or anything. She was conceived, born, and has lived her whole life here. So why the sudden onset of symptoms of this magnitude?

According to our doctor, who treats astronauts for both NASA and JAXA (Japan’s aerospace program), as well as mountain climbers who brave heights like Mount Kilimanjaro, their practice starts seeing chronic altitude sickness in folks who live at as low as 3,000 feet. He measured R’s blood gasses and found they were scarily out-of-balance, even a week and a half after being down at low altitude.

The poor kid has likely never handled this altitude properly, and as her body has grown and changed, her blood gasses finally became so imbalanced that the only way her body could signal the need for help was to take her migraines and create a huge mess. Pair this with that brain “spot” and a couple other more complicated issues, and all her symptoms are accounted for.

What Now?

We came home from this trip both on higher doses of her existing migraine medication, and on high altitude medication designed to bring her blood gasses back into balance.

She has not fainted once in the nine days since she started the altitude treatment. Her eye sight and hearing (the longer stretches accounted for by altitude) are continuing to improve as well.

Grace:

Folks, with both blindness and deafness, R was one step away from coma, two steps away from death. As my pastor put it, “there was only one direction this thing was going.” With cortical symptoms like this, the organs and nerves are still fully capable of function, but the brain looses the ability to process or recognize the information it is receiving. The spontaneous regaining of her sight and hearing on February 18, was all God!

We missed her morning dose of medication yesterday and she had a hard (head-achy, nauseous, moody) day and a horrific night last night (hardly able to sit up in bed, much less stand or call for help). Her pulse never dropped below 120 between 11pm and 7am, with spikes as high as 159! Thankful for the pulse monitor her doctor has her on recording her nights now.  There is now no doubt, whatsoever, that these new meds are making a tremendous difference!

Oldest Son:

In the meantime, my in-laws accompanied our 19-year-old all the way back to Rochester. He received a diagnosis last week – Chronic Fatigue Syndrome, but he tests clear of all the viruses I chronically carry that trigger my CFS. While I have astounding results with anti-viral medication, his battle has no medication available.

We continue to pray for renewal for our first-born. J’s and R’s symptom are quite different, but in many way he is more debilitated than his sister, unable to attend church, job, school, or drive a car. He has been physically devoid of strength, often unable to walk through the house from bed to kitchen, since Thanksgiving. We plan to have him tested by our high altitude doctor in July, just in case there is any causative overlap for our son.

Mount Hermon:

I will be leaving for Mount Hermon Christian Writers Conference tomorrow morning. I’m SO EXCITED! I’ve been counting down to this, our 50th anniversary, for two years now.

A little over a week ago, it was looking like I would have to cancel because of R’s health. Later that day, we started on new meds and our life made a dramatic change for the better. I will be teaching a workshop on Praise, Worship, Jubilee! and co-teaching another workshop, on writing critique groups, with one of my dearest friends, Deb Gruelle.

Prayer Needs:

  • Rick, as he does the “single dad” thing for ten days (the conference itself doesn’t start until Friday, but Deb and I are spending a couple days together before hand, because we haven’t been able to work together on our presentation yet, due to all my medical trips over the past six months, plus travel days).
  • My older kids as they struggle with health issues.
  • R and younger J as they return to school on Monday, after spring break. Since Thanksgiving, I’ve gone to R’s school every day so that I could immediately respond to all her medical crises, so it’s a stretch for me to not only not be at the school, but to be out of state.
  • Deb and I as we prepare our workshop, travel, and present. Physical strength, protection from illness, mental clarity, spiritual receptivity to God’s leading.
  • For God’s Holy Spirit to work mightily throughout the entire conference and in the hearts of all who attend.

Twelve Days

We have been living our miracle for twelve days now. Yes R. (age 16) is still sighted and hearing!

She can laugh at family jokes again. She can talk on a telephone. She can bake AND fully clean up after herself. We are so thankful!

We had hoped the faints would fully resolve with the return of scenes. Sadly, we had another episode at school this week, dictating another ambulance ride and ER trip.

The unique thing about this event was that she had enough warning to try to get herself safely to the floor before loosing responsiveness. She was aware that her ears stopped hearing normally and that her vision went dark, so she froze and started getting down to the ground.

The school police officer watched her go down and was excited that she only had the very last little bit of that process as an involuntary fall, so she didn’t hit the floor hard, as she normally has, and there was no head trauma this time. (She has had three concussions since early September.)

Thankfully, when R regained awareness ten minutes later, she was sighted and could hear again. We went to ER anyway, because of a prior agreement with her neurologist. Additional testing told us yet one more thing we now know that we are not dealing with.

We have now exhausted every local testing possibility anyone can think of. We know many, many things that are not our issues. These newest symptom developments have provided enough clues that new out-of-state specialists are now joining our investigation.

Since regaining her scenes, R has had a chronic migraine (for nearly two weeks – ouch!) so my husband will be picking up new medication from the pharmacy today, for us to try tonight at bedtime.

We also got new glasses last weekend and learned that while she has enough sight to function now, and her eyesight can even be improved with corrective lenses, she is still only correctable to the “legally blind” threshold of 20/200. She is also now “color-deficient” (color blind) in half of the color spectrum.

We had already started suspecting much of this, as she needed to be very close to large print, in order to read. And we had been having several unusual color-related conversations leading up to her eye exam.

R. thinks mustard yellow is a beautiful soft shade of lemon yellow. She thought she was “mis-remembering” what a lot of different colors looked like when she kept getting two shirts confused. When she could not find a large green letter on a highly-contrasting peach background, her full color-spectrum was tested, twice, and found lacking on several levels.

Next week I will start making arrangements for current auditory testing. R certainly hears now, engages with the world around her again, but it seems she may yet be missing some of the finer details. I stood at the foot of her bed and tried to whisper to her this morning, and she had me repeat myself at normal volume before she understood.

I’m trying to rejoice in all the blessings, while we keep digging and fighting for answers. I’ve spent the day reading articles from a mom who writes about rising kids with chronic illness at Not the Former Things, and my heart resounds with so much she shares. I could list several links here, but I think Living In Fear Of The Next Bad Thing probably is the best single article I can link to.

There have been so many Sunday night church services where we’ve gotten called out to the youth group room for our daughter’s medical events. Between church, school, home, and life in general, we’ve documented 43 collapses since Sept. 8 (and may have failed to record a few more!), so I sat in church last Sunday night with my hands clenched, heart pounding, and legs ready to spring into action if there were another crisis.

It took my husband sitting down to pray with me for several minutes before I could calm my mind enough to offer God a sacrifice of praise in the midst of the fear-storm. In His faithfulness, God replaced my panic with a heart ready to enter into worship and receive the message he had for me during the sermon.

Is R all better? No.

However, there is wild improvement, in vision, in hearing, in potential medical direction, in frequency of faints – only three in the past four weeks, since implementing the Mayo POTS faint-reduction protocol. (We have seen up to four episodes with 24 hours, and daily, or an least several per week, were our normal frequency before a month ago.)

Now we are asking God for great wisdom, to direct our steps toward the next doctors who can help us figure out the root cause of her autonomic dysfunction and sensory issues. Actually, our first request is simply for full restoration, if that is His plan. Thank you for your continuing prayers!

J., our 19-year-old, who have been ill (different symptoms), up and down, for nearly two years now, with this round keeping him home-bound and primarily bed-ridden since late November, seems to be slightly improving again now. He is still quite ill and local doctors have also run out of ideas for him.

The current plan is that I will take R. back to an Arizona hospital later this month. J.’s grandparents will accompany him to Maryland for an intensive week of medical testing shortly thereafter. And Rick will stay home to keep our youngest in school, as he keeps working his job that God is using to provide our health insurance benefits.

When R. and I get home from Arizona, I’ll head out to California to attend and teach two workshops at the Mount Hermon Christian Writer’s Conference. God closed the door so that I didn’t go last year. I am so eager to be back with my Jesus-loving word nerd friends again this year, as we celebrate our conference Jubilee! Won’t you consider joining us? (If you go, please let me know and register as part of the Reno LifeWriter group, as we are getting close to earning a group discount.)

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

Page 1 of 5

Powered by WordPress & Theme by Anders Norén

Visit Us On PinterestVisit Us On FacebookVisit Us On TwitterVisit Us On YoutubeVisit Us On InstagramVisit Us On Google PlusVisit Us On LinkedinCheck Our Feed