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
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.
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.
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.”
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.
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!
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!
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.
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.
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).
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.
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.