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

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

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