Daddy Update – the first week


Daddy met with his Neuro, PCP, Vascular Surgeon and PT this week. There is more clarity. 3 PROBLEMS: (1) “mild” stroke (2) multiple blockages (ranging from 65+% to 100%) impeding blood flow to brain (3) 2 small to medium unruptured aneurysms. 3 STRATEGIES: (1) Rehab in home. Pray that we push for major gains this month and Daddy will rest appropriately. Like me, resting is an area of growth for him. (2) Vasc. Surgeon does NOT recommend surgery presently bc it’s riskier to intervene than to live with this level of blockage. Follow up in 6 months (3) Neuro is consulting with Neuro Surgeon to see if Daddy’s aneurysms merit intervention. Presently we are using diet and safe exercise to manage stress and blood pressure. Daddy has been devoted to daily exercise (cardio and weights throughout the day) forever. He has managed hypertension since his youth. There are physical ups and downs. Pray (1) we are able to help him exercise (2) for the Lord’s healing (3) that we will engage the right in home help asap ||| Thank you SO MUCH for your kindness and prayers. And thanks to the friends who have done such practical stuff 💗. No visits yet, please, as we have more appointments to set up. Thank you for all your expressions of care for Daddy. It occurred to me that you might think it’s funny that I call him that. I NEVER called him that until I got sick. When I woke up it was only Daddy!!! and Mommy!!! Ok, mostly Mommy 🤣🤣🤣💗💗💗||| This situation is more nuanced than I thought. I did not see Daddy after the ER and I think none of us understood the physical implications nor the multiple levels of complication. Special thanks to my brothers and sisters who gauged the situation and MADE IT HAPPEN this week. “IT” = making sure we are okay, moving furniture, helping Daddy and Mommy, making me laugh, etc. xoxoxo

LearningHowToLive.org


“We train for Resilience… Confidence…LIFE.” I did not know this was Trainer David’s philosophy, I just show up and (mostly) do what he says. We NEVER discussed the day we met until an event when he was asked his first impression of me during Q&A. So in front of 70 people the man says without skipping a beat, “Well, it was like she was talking AT me with a list of requirements

– like, if you cannot help me, I will find someone who can.” 🤣. I had no idea I came off as so belligerent. I thought I was being nice that day. When David evaluated me at my first session in Nov 2013, Daddy came with me and maintained a perimeter of 3 feet at all times. He was “reading” a huge commentary on Isaiah. 🤣🤣. Oh, Daddy. His covert skills are honed. He’s continuing to be determined to move his left side more. 💗. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Life is my Sport


Ernie stayed while Ruthie took the kids home. 💗 We are so grateful. Boo Boo will be here soon. Daddy is meeting his new Neuro. I’m in the waiting room. June and JP took me to see Randy and then I got home and had 20 min to write a Med Resume bc I ASSURE YOU – we fully intend on inviting all these new docs to give my Daddy the HIGHEST level of care 😑. Mm hmm. Randy and I talked about managing risk/minimizing further injury to myself while helping, and he drilled me on lateral movement and catching + breaking someone else’s fall safely. PT Keke did Gait Belt on Stairs 101 (JP wore the belt 🙌). I have a new script for labral tear rehab (again) but I’m taking some time off. When I met R in 14 he watched for a few mo. then announced casually “I’m going to make an athlete out of you.” Me: 😑😑🙄🙄. I didn’t believe him, but I thought he was a nice person 😑. A yr later a lady saw me in the machine. She was the first African American woman to represent the US in international competition back in the day (track and field). “Excuse me, what is your sport?” she asked. Me: I dont have a sport. I had a stroke. LIFE IS MY SPORT. || She told me her first thought was, That girl IS IN SHAPE!! 🤣 FYI, you can’t tell I’m disabled unless you see my gait up close, or the hole in my neck. I have trained with R&D for 5 years for this scenario. The pressure is much less bc Ernie is here, but I’m confident in the training God provided for me. Admittedly I’m a bit tore up presently. But my theory is sound and I know how to mitigate risk bc this is an emergency scenario. My Daddy is new at this and the full physical impact is yet unknown. Problem is that his mind and body both STILL work faster than mine 😑. Please pray for him, and protection for all of us. Thanks so much for all of your kindness. Mommy says 💗. And thank you for your kind concern re. me “helping” – it’s never ideal, but in case I’m the only option, I am confident that I can do this. But I’m just saying that sometimes I might be a good option. By God’s Grace, I know I can assist positively and am prepared to take the consequences. David – it’s your turn tomorrow. 🙌🙌🙌.

Daddy is Home!


💗💗💗 Thank you so much for your prayers. Daddy is home!! His left side has some “involvement”, but I assure you that his mind is as sharp as ever 🤣🤣🤣 PTL. I’m keeping my Mon Tues appointments bc I need to strategize with R and D and @fyzicalgermantown about core usage, breathing and bracing, and how to manage my joints, especially in these early days. Daddy is using a walker. Please pray he gains strength fast. 💗💗💗

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PT is home and happy to be at home, without the interruptions of a hospital room. PT, Juio and family are very grateful to all for your prayerful support. The prayerful support was definitely felt.
PT had two brain images today, which demonstrated no significant issues (Praise the Lord). Two small aneurysms are present, but these will be managed medically. He will have follow up appointments with Physical Therapy, a Neuroradiologist and a Neurologist in the upcoming week. He does have some mild weakness on his left side and requires some help with walking. This is to be addressed by Physical Therapy. 

Again, very grateful for your prayers. Continued prayers for PT and family are very valued and appreciated.
PS.  P and S from RIO?! Are you reading this? I saw your comment – thank you so much.  I just want you to know I was loopy when I met you, but I meant well 🤣.  Thanks for checking in 💗

Still Waiting…

Thank you for your kind prayers. We are waiting on more results, but Daddy did well today at the hospital. Ernie is with Mommy 🙌. Please also pray for strength and grace for Mommy. She’s dealt with a lot. But as she points out, “We are professionals.” 

Also, I never sent an update about myself bc it’s been kinda…rough…  I had some sudden L ear hearing loss in q4 2018 and at the same time my balance got worse, dizziness, nausea, etc. plus I’ve got 3 different kinds of interfering noise in my ear.  It’s been a tough adjustment and it’s ongoing.  It messed up my gait even more, whereas I had admitted it broke down in Summer 2018 and had just made some great gains.  I messed up my L hip again, but after being medically evasive and giving my people a hard time for two months, I finally saw the ortho and got a proper script for rehab.  

So the WHOLE TIME I was getting the full work up for my hearing, Daddy was just making these faces like, 😞😒😑 bc he is a hilarious and fierce advocate and he was unamused that these symptoms just appeared 7.5 years post injury.  But the images reveal no cause for alarm and no good reason why this happened.

I have a new hearing aid, a lovely Audiologist, and the task of continuing to adjust for new factors.  When I first woke up I learned to adjust for ABCDE.  Now it’s ABCDE + XYZ.  Frankly stated, I see and hear things that are not there.  This is not new, but it hasn’t been this bad or scary in a while.  But the WONDERFUL thing is that the Lord gave me an exceptionally skilled and compassionate group of professionals to help me, and to keep me accountable even when I just want to pretend nothing is happening.

The other wonderful thing is that although things change, He is faithful.  I’m not just saying that bc it’s a phrase in common usage 😑😑😑😑.  I’ve had plenty of opportunities to really think about that.  I wouldn’t say it if it weren’t true. And FYI He is more than faithful – there are so many other things to be said, but not right now,

Thanks for being patient and kind re. my appalling communication patterns.  It’s been so long since I posted, I forgot how this app works.  But I appreciate you, I really do.

Please Pray for Daddy


Please pray for my Daddy. This was our church prayer req: This is being sent to request urgent prayer for PT. Paramedics were called today and PT was taken to Suburban Hospital. He was noted to have a mild stroke, but also two aneurysms that will need urgent surgical management. More detailed tests will occur tomorrow. Juio is with PT at the hospital and will be spending the night with him there. No visitors at this time, please.

Please pray for the doctor’s wisdom in his treatment, for good care, for correct management and for full recovery. Please also be in prayer for Juio and family. Even now, please bring this before our merciful and compassionate Father.
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mm hmm. im just saying, my daddy is SO HARDCORE, you have no idea 😑💗💗. And you know what? yesterday his bed was in the hall in the ER bc he just got back from an MRI and I had previously been out in the waiting room. But I walked back there (it was super crowded!) and when i saw him we were both sad and i took a knee right there and prayed for him. The ability to kneel spontaneously is a HUGE achievement. (thank you, Guys!) and the ability to approach the Throne of Grace with boldness is a HUGE privilege made possible by Christ. The last time i knelt like that at a bedside was 20 years ago with Mrs. Ridgely at Georgetown. 💗

thanks for your prayers.

518.  Declaration of Intent

I got sick in 2011 but this journey started more than a decade ago. || I appreciate your prayers, especially now that the urgency of the acute stage has long gone. 2018 was rough – but great, too – God led me to this old Journal entry (I wrote it the night I decided to move to OR to practice saying Yes to God), and He also grew my ability to search the scriptures bc although I have accepted these things as from my Father’s hand, life is still difficult. This Journal Entry was a clear declaration, but when I woke up I was like, *Ummmm….Lord? I didn’t actually mean it THAT MUCH.* But He knew that through the Spirit-led exercise of my cognitive functions I would acknowledge that this makes sense and I would plow ahead trusting His sufficiency. That said, I had no notion that it would hurt this much. I knew theoretically that I’d be disabled for life, but it only hit home recently. The DMV (unbidden) sent me my Permanent Disabled Parking tags and I wept when I saw them. But I am glad to be in the King’s service – and although He has every right to my unquestioning loyalty/service, He is patient, kind, and gentle – He lets me ask all sorts of questions, He doesn’t just make vague statements about His grace – He sent me help, and He acknowledges, as to Elijah, that “the journey is too great for thee.” God never diminishes my grief but equips me for this path that bears the unmistakable imprint of the Divine. I wrote in 2012 that every step is a choice. It still is. And every day still hurts, but not just with the ache of loss – painfully beautiful and wonderful things have happened that I would never have experienced if I had not gotten sick. I’m not great at talking about, or even tolerating the good stuff. But it’s there. Okay, FINE – I’m really bad at talking about it. Or I refuse to talk about it at all. (Don’t worry, this is a recognized “area of growth” for me.) In any case, I’m ready to say goodbye to 2018 and welcome 2019. Happy New Year. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

517. Thank You! Operation Lift: Burundi

 

You made Operation Lift: Burundi a HUGE SUCCESS. We exceeded the goal – Discovery School is moving forward with the septic system and the excess will go to a much-needed school bus || Joy gave me this scarf when I visited Burundi in 2011. I gave away almost everything, but I kept this. Africa will always be on my heart. Thank you for your kindness 💗, ning || THANK YOU for being a part of building Burundi’s future. Your generosity in standing with us is overwhelming. – Jesse and Joy Johnson

PS.  Individual thank you’s to the people I have addresses for are forthcoming – I appreciate your patience as I’ve hit another physical rough patch.  I know I say that ALL THE TIME, but that’s how the cookie crumbles.  I’m grateful to have a Team to help me.

PPS.  When I visited Burundi in 2011, Discovery School and the work in general were no where NEAR this level of development.  It’s what we talked about in the ideal vision state.  Of course, the ideal has not been obtained yet, but it was SHOCKING to me to see the reality being built – our technically, poured – check out these guys pouring a slab bucket by bucket.  PTL.  I explained to my people (Hi, Matt!!) that “PTL” is a nerdy Christianese acronym for “Praise the Lord.”  But seriously?  This is not a drill.  It’s happening.  And it’s changing lives on a scale that has the potential to shape a nation.  Thank you for being a part of this.

 

Confidence Without Compromise – Liz Margaret


When I did that vid with David for the gym, a question was, Summarize your Recovery in one word. Me: CONFIDENCE. I am confident in owning everything that happened, and every choice I made in the aftermath. I am confident in the Shepherd’s Leading and have no regrets. ||. Thank you, @the_lizmargaret !! https://lizmargaret.com/2018/04/09/meet-ann-confidence-without-compromise-1/ #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

516. Op Lift Burundi Update

Just got an update. THANK YOU 💗. 17 Days left to close the gap. To be clear: The cost of the septic system is $15k. A generous donor gifted DS with half the cost. We just need to come up w the other half, which is entirely doable. That’s what I mean when I say “every gift matched through Mar 22” . $3.39k to go! Seriously, DS quality of education is in HIGH demand and they cannot serve a larger population without this septic system. And they cannot serve existing students with disabilities with the current restrooms. My friends used to carry my chair at non ADA spaces. 😢😢 FYI ADA compliance doesn’t exist in Burundi. Donate now at shreddedgrace.com – click on the Discovery School Eye/Sun. I’m working on individual thank you’s on behalf of my friends, Jesse and Joy, bc we are *very* grateful.