Update: The In Darkness Sing blog at JenniferSaake is experiencing prolonged technical issues, so I'm temporarily posting back here on my old Stroke of Grace blog.

Thirty-nine-year-old Jennifer Saake (founder, Hannah's Prayer Ministries), experienced 6 strokes via vertebral dissection at a chiropractic office, including brain stem and cerebellum bleeds, in Oct. 2011. Jenni remained hospitalized for nearly 2 months and was not expected to live (near death experience) nor recover, but if she even survived, she was slated to live out her days in a nursing home or, best case, to maybe come home but wheelchair-bound and needing 24-hour care. At 5 years, 7 months God showed how He was writing her story from the beginning.

Jennifer is currently writing more books and stays active on both Facebook and Pinterest. Stroke of Grace became In Darkness Sing in early 2018 and has moved, along with all five of Jennifer's active blogs, to one location at JenniferSaake.com. (Please see above temporary update note above!)

Tuesday, June 25, 2013

20 Months

It's a week of "graduations" for me!

Yesterday was my last scheduled appointment with R, my wonderful Speech Therapist. Hopefully I will soon be receiving the desired referral to the local university's voice program, but it is sad (and amazing and exciting and a little overwhelming) to think that more than a year and a half of ST is over!

Tomorrow is my last (currently) planned PT day, specifically tied to the strokes. My physical therapist thinks I could benefit from ongoing therapy, but we also wants to save some insurance coverage for the future, in case I were to need additional rehab in the face of another surgery or injury or anything like that, especially given my added stroke-related potential struggles. So we have spent the last several sessions intensively drilling things I can work on at home without her regular and ongoing coaching. Recovery, therapy, is far from over, will be a lifetime pursuit, no doubt, but scheduled PT sessions with a therapist are coming to an end for now.

For the first couple months these were daily therapies. When I came home, still 3 or 4 times a week. Still at least weekly long after that. The last few months, formal PT has been at once every other week (with daily gym or home therapy work-outs in between) and ST had tapered down to just once a month. After having this be so much a part of my new, post-stroke life, it feels a little intimidating, and a whole lot freeing, to be closing these chapters of my life this week! I had wondered if or when this might ever come about!!! I expected to be nothing but beyond thrilled, and I am so very happy and thankful. I am surprised to also be processing a bit of panic and abandonment emotions. Odd! (But then again, what about this journey isn't odd?)

How I thought I would feel!
How I find myself surprised to actually be feeling, as well. Both pictures via Facebook.
Therapy/counseling continues on a weekly basis. There is SO MUCH to be addressed there, I don't know that I will be ready to see those appointments begin to dwindle in frequency for a very long time yet to come!

If you have a Facebook account, could you please do me a huge favor??? I am trying to win a Luminosity membership (brain training) and have entered their "6 word story" contest, describing my own brain. If you would please go to https://apps.facebook.com/sixwordstory/entry/2847716 and vote for me (you can vote again, once every 24 hours), I would so appreciate this moment of your time!!

From Facebook

Sunday, June 23, 2013

Among the Living

Church was hard this morning. About half way through the sermon our pastor started talking about Moses's seeing the glory of God. The message hit too close to home.


I've often questioned why I never "saw God" when I had my near death experience. It was amazing and beautiful and is still more than my heart can really process, but I never saw the face of Jesus. Today, when our pastor was talking about how Moses got to behold a glimpse of God's glory, but not His face, because Moses would be too overwhelmed, consumed even, by the sight, I realized God's grace and protection on a whole new level.

I totally lost it. I guess you could describe my reaction as a PTS recoil, but rather than this being due to trauma, it was due to overwhelming wonder and the stark contrast between this reality and the next. Simply no words are adequate for the emotional process here.

There was another issue I need to resolve with the Lord too, but that isn't for this blog.
Just as I was starting to get somewhat under control again, came our closing set of songs. We opened with a song from Psalm 51, "Create in me a clean heart, O God, restore a right spirit within me..." The tears started to fall again, as I have shared what a struggle this particular passage has been to me.

I can't even tell you what the next couple songs were, because by now our kids were concerned and stressed, trying to comfort me, so I was pretty much just focused on trying to comfort them!

But then the last song came on loud and strong, including  words along the lines of, "I go where God and glory are...this broken body I now resign..." In a totally different context than a physical stroke, meaning brain damage, this song also includes the word "stroke, " as in a measurement of time, but to me there is profound double meaning in this word. I never have made it through this particular song without tears, not once! It always does me in.

Since the tears were already flowing, and I was hick-upping to try to choke down noisy sobs, that's all I needed to really push me over the edge! I was a total mess when service ended. Then came trying to explain myself to several lovingly concerned friends. Thank you, everyone who checked on me. This is what I couldn't begin to know how to explain!

Would I trade that moment of heavenly wonder? No! I am totally thankful for God's grace in this. As I've explained to my husband, it is the most amazing part of this whole journey. But the contrast of life here, seeking to understand my purpose this side of such profound revelation, makes having a foretaste of the glory there, the homesickness,  also the very most painful part.

Bless our God, O peoples; let the sound of his praise be heard, who has kept our soul among the living and has not let our feet slip. (Ps. 66:8-9 ESV)

Wednesday, June 19, 2013

Calling Reno Locals

(Please pass along and re-post wherever you can. Thank you! If you are from northern Nevada, this post is for you. If you aren't in my neck of the woods, do you know anyone who might be?)

I thought you might like to know about my stroke recovery journey since I'm a local, Reno, homeschooling mom for 10+ years, forced into "retirement," or at least changing educational direction, due to health circumstance. More of my story is found at www.StrokeOfGrace.blogspot.com


And this weekend: Yard sale, this Saturday, June 22, 2013 at 581 Secretariat Ct., 89521. 8AM - 2PM. Saturday only. Support a family in young mom's stroke recovery journey. Items for sale include homeschool curriculum and craft supplies (preschool through 8th grade, including My Father's World and Math-U-See), a dresser, a hide-a-bed couch, exercise bike, wheelchair, toddler bicycles and scooter cars, clothes, book, toys, and assorted housewares.

Let's return to the LORD. He has torn us to shreds, but he will bandage our wounds and make us well... Let's do our best to know the LORD. His coming is as certain as the morning rain renewing the earth in the springtime. - Hosea 6:1 and 3

Open Wide

Here's where I sit almost all day, just about every day (at least when I'm home, not at a doctor or therapy, still taking up at least a part of nearly every day of my life!). It is where this computer (usually on my lap, not the side table, because I can't support my weight on that left arm due to pain and distractingly violent shaking of the arm when I try) is and where I connect with you, where my blog and my books are getting written, as well as where I do many of my therapies, like my therapeutic music program and work on brain strengthen computer programs. (My left eye still looks like I've been injected with Botox! Doesn't my emergency beeper make a fashionable necklace? ;) )

Tuesday's scope went well. They didn't even have to stick the camera down my nose, just my mouth, to the back of my throat! I learned a lot about my vocal chords. I have quite a bit of scar tissue from my intibation and some narrowing of my trachea as a result (since this isn't causing me breathing issues now, I just have to be sure all doctors and radiologist know it before I ever have surgery and am intabated again), but the vocal chord function is surprisingly, mechanically pretty good. I didn't know it was possible to have ataxic vocal chords (the involuntary shaking of my left arm and leg, attributed to the damaged cerebellum, is referred to as ataxia), but I still do, fairly profoundly at that (wiggly, vibrating vocal chords)! I have been told about the arm and leg (so would presume this applies to the voice box as well) that this will likely never be fully resolved.

It sounds like the doctor is going to refer me for further speech therapy, but vocally, the voice box is in pretty good shape though the left vocal chord is visibly smaller (slightly atrophied?) than my big beefed up right side, but able to open and shut (the issue they were concerned about with paralysis) quite well. I have a little sore throat after the procedure, but not nearly as much as I expected. The doctor encouraged me by saying I was amazingly articulate and I would make a fantastic and inspirational public speaker, we just need to work on the hesitation, breath control for phrasing, and occasional pronunciation issues, to help me master more smooth speech patterns, but pretty much all of that should be able to be addressed through continued therapy since the structural function seems to have been mostly restored now. This did my heart a world of good to hear!

Jaw and Face Stretches - Sorry you can't read my hat that reads, "Failure Is Not An Option!"

Kendra and I are discovering, as we get farther and father into recovery, that the differences in our injuries and recovery progress are becoming more and more obviously profound. I don't know how reliable my estimations may or may not be, but from my perspective, I seem to be seeing somewhat of a more rapid physical recovery than she is, whereas it sounds like Kendra is likely seeing more cognitive gains than I am? We realize that the nearly 6 month difference in our recovery journeys, still is rather significant at this stage, as things I can do today I couldn't DREAM of six months ago. But even with so much similarity, there are profound (sometimes painful, when we give into the comparison game) differences too. We are both thrilled for one another in every measure of progress, it is just becoming less and less of an identical journey than it was in the earlier months.

I mention this because I have made several stroke friends through this blog and I ask you to please don't let anything I post discourage you if you are not there yet. I know I am blessed not to face some of your challenges (I can't imagine being non-verbal, especially for months or years, for example!), but even if we aren't on exactly the same course or speed of recovery, there are likely some things in my recovery journey you may find yourself thankful to not be facing as well! I never want to hurt you by sharing my miracles. Please don't hesitate to share your progress (or frustrations at your areas of challenge) in my comments either!

"I say to myself, 'The LORD is my portion; therefore I will wait for him.'" Lamentations 3:24

Monday, June 17, 2013

Videos and Scopes

From Daily inspiration from Jon Acuff, via Facebook.
The strokes have given me a sickening and profound new fear of heights (I'm guessing due to their messing with the balance center of my brain). Love this picture! (Well, not at all the picture, as it makes me want to throw up, but both parts of the words!) True, all the way around!!!

What to write? I'm feeling fairly quiet this week. I'm rather out of ideas about what I should even share. So here goes randomness.

Let's see. First I want to tell you about an article at Five In Tow, titled Ordinary Days. It is a bittersweet little piece about an adult woman's reflections on her childhood loss of her own father. The bit that rather shook me was, "Someday, you’re going to slip right out of your body and your kid is going to be left grappling with the loss.  It’s kind of strange how one soul can be free and another weighed down by the same event.  You will be gone, and they will be here, remembering."

This made me catch my breath as I reflected on the fact that I nearly died a year and a half ago. For a long while I was mad at God and really thought it would be better for my family if they didn't even have to deal with all the changes in me. I just wanted to be gone, spirit freed. It has taken me well over a year to begin to understand their perspective, how the same event that could have been so freeing to me would have been equally weighty for them, for the rest of their lives.


Tomorrow, I get a scope of my vocal chords (camera in through the nose, then down the throat). When I talk to strangers, it is still usually, "What?" with an occasional, "But the strokes didn't effect your speech, it sounds like!" With such a wide variant in reactions, I really don't know what to think! The scope should tell us what level of vocal chord paralysis still remains. It is required in order to evaluate me as a candidate for a new speech program I'm hoping to get into, on the advice of my current Speech Therapist. I am really focused on ST because I hope to have a public speaking ministry some day. Please pray I don't throw up on the techs (that I'm able to go at all) as I am pretty queasy today and don't want to gag tomorrow!

Next, I guess I should give an update on my weight loss efforts. The weight is still a battle. My system is doing better, but could take a couple years to find the combination that really gets it under control. Still yo-yo-ing within my same 5-pound window, so no loss actually. :( At least no real gain either, as there were a couple weeks there where I topped my regular little window and saw 170 for the first time in my entire life (the highest I even got pregnant was in the 130s to low 150s, depending on the pregnancy and what weight I started at).

Lately I'm about 164-168ish, but haven't seen the 150 for many, may months now. I should be/would like to be 120-125. My old "high" used to be 143, so 170 may seem an "I wish" weight to some readers (and I wish to in no way mock your struggles if my 40-50 pounds of needed loss seem minimal), but it is pretty hard to cope with for me! I love the article at MyFriendTeresaBlog on how if feels to want to hide from the camera if you aren't at your ideal weight! Tonight I signed signing up for Beyond Diet (if you are interested in signing up, contact me first as I will be happy to walk you through how I found a coupon for 15% off their services), a set of lots of healthy meals plans and message board support. Hopefully this will help with my post-stroke frustration in meal planning too.

I did read just this week that when the brain is working SO HARD to cope with the simple requirements of life (like breathing, heartbeat, circulation, etc.) it burns a BUNCH more calories than normal. So in addition to a feeding tubes, nothing by mouth, then baby foods in the hospital, this accounts for the dramatic weight loss there. I was down around 110 or maybe even closer to 100 when I got home from the hospital. While there, once I could take liquids by mouth, they were feeding Boost-laden chocolate milkshakes 6 times per day, just to try to up my coloric intake. I have to admit I rather liked that part and was fairly addicted to chocolate milk or milkshakes once I got home!

I'm kind of thinking the whole brain work burning calories is why my doctor saw the weight gain as a good sign because my body was no longer burning every calorie (plus some) I took in, just to survive. She also said the gain provided more energy to burn off during my therapy sessions, whereas, continued loss would have left me too weak for recovery. Add to this massive metabolism changes, not being able to burn calories via walking for much of the first year, along with brain changes causing serious food cravings and lots of high calorie foods gifted to me that first year, and I guess it really isn't too surprising that at soon as my body stopped just burning to fight for basic survival, I ballooned! 

Still, I would like to convince my body that it shouldn't be hanging onto the pounds now! If only hours and hours of therapy each week were doing anything to melt away my growing buldges, but alas, no. I would like to think the creeping scales were, in part, attributed to muscle weight being higher than fat, but my huge belly bulge (that has been mistaken for pregnancy) tells me otherwise.

My eyesight is still too messed up for me to feel safe/comfortable trying to drive yet, to see back over my shoulders. I have already seen so much improvement in such a relatively short amount of time that maybe someday it will still be possible? Two doctors agreed and my eye doctor signed off on my permission to reinstate my license months ago, but until I am confident in my lack of endangering anyone else on the road, I won't be getting behind a wheel. Risking by own life is one thing (like I do every time I get in the pool for water therapy), but putting anyone else at risk is simply not an option! It is a fine balance between the need to "get back on the horse" so to speak (not letting the fear of driving keep me from even trying) and the realistic evaluation of what I believe to be in the best interest of fellow drivers.

My feet are good (I was recently asked about the foot pain from my boots that had to be medically evaluated a few weeks back), though I've noticed if I'm up on them for a few hours (like out shopping after church), that my toes go numb and either or both feet start to really hurt, no matter what shoes I am wearing. I think a wheel chair still needs to be my default when we are out for long.

 Getting up once I'm down.

I'm not quite sure what to do about the post stroke pain, also called CPS, short for Central Pain Syndrome. (They say 40-60% of us get it.) It is getting pretty bad and there are not really any strong pain medications I don't react to. My left leg hurts most of the time, as do my shoulder, neck, jaw, and upper arm. My hand hurts quite often now too. Last week I almost had to quit water therapy because the water pushing against my left leg just hurt!!! But I move SO MUCH better in the water than out of it, the pain will have to get a lot worse in order to drive me out of the water. I guess I'm stubborn like that.
Hand therapy / recovery video with prior hyper-mobility (double jointedness).

Our daughter still says {yet another!) hurt foot, but she isn't complaining as much nor as often and she is able to do pretty much anything and everything on it now (she spent the day running around a water park last week, climbing the stairs, splashing and playing) so I am not too worried about the likelihood of it being actually broken anymore (as we thought from the x-rays, but the orthopedic surgeon decided not to cast).

Remember my rose garden? I have just posted a few updated photos I took there this week. over on my original post. But here are a few other views from my garden right now. :)

General exercises (part 1)

Not much else going on here. All the kids are home for the summer. {Happy dance on my part, at least in my heart, since not in my feet! :) } We still haven't heard anything about school for our daughter, so I would really appreciate your prayers for an opening there, and to put our minds to rest, we would love to hear this news very soon! We are working on moving our oldest into his own room (he has been sharing with our youngest and we no longer need a school room). All the kids start the new school year on Aug 12 (early this year)! Thanks to the home school moms who are helping me sort curriculum, clean out or old school room, and are evening hosting a garage sale for us this next weekend!
Single-handed hairdo.

 I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me. - Galations 2:20