Many Sparrows

Last week I left the house for the first time for some testing. My clinic is taking all sorts of precautions and this stuff had to be deemed “necessary” and I had to pass screening before being let in the locked front doors. I’m grateful for the medical pro’s who keep treating in the midst of all this. Before lockdown I had 3 Therapy Rx: 1) Occupational 2) Vestibular 3) Hip Rehab. Although med environments are starting to open up I’m not eager to pursue these Therapies – except the Hip thing. Coach R is still in charge of that (per my ortho) – but not yet. Being home and not at the doc ALL THE TIME like I was prior to seclusion has allowed me to rest and adjust to these new physical parameters (AGAIN), although it’s still a work in progress and I miss the BPNA with Coach “Let’s Practice good habits” R and Sister “you need Tabata” Maria . Daddy has not been scheduled for GB surgery yet, but has blood and imaging on the horizon in the next month. Mm hmm. 😑 I’m not eager to go anywhere bc I want to minimize my own exposure especially bc I live with Mommy Daddy. Although, it could be argued that I have an underlying health condition and should be careful on my own account, but whatever. 🤣🤣😑. The great thing is, though, that I’m continuing to learn even though I’m not an OutPatient. My people have taught me enough self awareness that this time is very useful as I observe my own performance in daily household tasks like laundry and making tea. But the break from my Medical Rounds has also driven home the seriousness of my situation. I’m busy prioritizing the skills needed to preserve/build my quality of life and I’m realizing just how many things I dismissed as unimportant after I woke up. I might have dismissed them, but God never did – He just shielded me from the full realization of it bc it was too heavy for me to carry. FYI, it’s STILL too heavy. Which is why it’s a good thing He carries it for me. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

I 💗 Telehealth | GB waitlist

I’ve resorted to wearing sunglasses and bringing a pile of chocolate to my appointments. Yesterday – my doc: You look like a movie star 😎. Me: I’m pretending you’re not here 😑. 🤣🤣🤣🤣 JK. My shenanigans make them laugh, which is good, bc healthcare professionals could all use a laugh right now. ***Praying for their protection and efficacy in their work, and for healing for those who must be treated in the hospital, not digitally. 💗💗💗*** Daddy had a phone appointment w his Gall Bladder surgeon and is now on the waiting list for GB removal surgery. Please pray for the Lord’s overruling in the timing of this and Daddy’s stability in the meantime. Also, he might have to go in for maintenance, and I will have to go to my doc for some testing in May. Please pray for protection for Mommy Daddy and me. My preference is for no one to leave this house 😑 but we will do what we must. Don’t worry, we have protective gear, however, after the CDC suggested mask-wearing my plan was simply to stay home bc I have major mask and respiratory baggage. I never admitted that I remember as much of the life-support/ventilator process as I do. My concerns have surfaced in training like this: Me: I am NEVER doing a vO2 test, David. EVER. 😑|| Randy: I don’t like the way you’re breathing. Me: Immaterial. WAS MY PERFORMANCE ACCEPTABLE TO YOU?!?!…[later] Sorry I was mean again. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

And the Word became flesh….

And the Word became flesh and dwelt among us……  To take pains to communicate in a way others will understand is a small way to emulate God’s plan for humanity.  Psalm 121:1 – this is just a token for this year’s Sunday School memory challenge.  I got locked out of my online #cuedspeech course so I had to make some stuff up. ROTFLOL.   I’m cueing in slo mo with my voice off bc I’m super self conscious….but I’m learning.

2 prayer Reqs 💗

Look – it’s Daddy!!!! YAY. Being home and doing quiet home things is SO MUCH BETTER than where we were last summer – with medical drama 😑 and then Mommy Daddy were away for an entire week bc of his gall bladder. I went out to my appointments and they just disappeared. Now, I love being alone, but by the end of the week I was antsy like, Daddy is messing up our Recreation Therapy Recovery Schedule!!!! And let’s be real: I’m looking for Mommy all the time in any context 🤣🤣🤣. So this moment of walking was great, and made me very grateful that there is zero hospital involvement presently and no one’s going to ANY medical environment. However, I have a very active telehealth schedule 😑. Apparently I’m a riot over telehealth. To me, it’s very painful – the only thing worse than phone talking is adding an image 😑. But I’m being very well taken care of, PTL. Prayer Reqs: (1) Ear adjustment: the vacuum cleaner was so bad yesterday, I’ve taken a 24 hour vow of silence (2) Medical decisions for me… thank you!! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Learning How to Cue

I’m learning #cuedspeech – it is a language supplement, NOT a language in itself like #ASL – which I’d like to eventually learn. It makes language visible/accessible to deaf and Hard of Hearing kids. 🔥 CS was invented in 1966, so the first generation of Cuers is now raising kids who have cued from birth. But I’m learning it as an adult and I have a significant brain injury. This is a challenge on many fronts. But I’m trying to learn 1 verse from Psalm 121 for this year’s Sunday School challenge. I can only do 1 verse. In fact, one LINE got me all flustered. But it’s a token – a gesture on my part. One of the reasons I wanted to be a missionary was people need the word of God communicated to them in a way they can understand. The adjustments to hearing, the vacuum cleaner, balance, etc. is difficult. 😳 But praise God, Ed had a good birthday yesterday, and God is teaching me to enjoy His path after all that crazy prep work He’s led me through. He’s also challenging me to pray for those serving the sick and vulnerable, those keeping our infrastructure moving, and those researching a vaccine. 💗 Thank you for what you’re doing. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Abiding = 🔥

What a joy to participate in the virtual Lord’s Supper on Sunday!! I haven’t been to the chapel in over a year, and I confess I cried as I scrolled through the thumbnails of my brothers and sisters. And then KRK preached 🙌. However, apparently exposure to sound aggravates whatever is going on in my head. Also, the last time I saw them over the computer was in the vid Kim made me while I was in the Valley. I had become unresponsive, but the docs said familiar voices might help, so Kim made a vid of my Chapel Family talking to me. Dude – that is one of the sweetest and most troubling memories 💗😢💗. Anyway, I’m really struggling to figure out my new ear and balance parameters, and as much as I believe in the discipline of the body and the mind as taught in the scriptures, my power depends on the extent to which I can abide in the Vine. I am extremely limited. But Christ renders the idea of capacity immaterial. (Pic: our dogwood is getting ready to bloom!) #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Resource Scarcity

I was doing pretty well with this whole COVID-19 business until I heard a PM use the word “ventilator.” And I was all, AAAAHHHHH! Bad things. NOT GOOD. (Flashback.). And then I learned that in the absence of adequate equipment hospitals will have to prioritize access to these ventilators. And my heart went out to the people having to plan ahead, and the patients who are dreading this. My Survivor friends often deal with questions of the value of their life vs. the resources consumed in saving/maintaining their lives. This is DEEP WATER with no easy answer. All I can say is that my AVM Rupture taught me God’s value for the individual. He asks us to turn our faces towards Him no matter how we feel. And He demonstrated the value He places on human life by giving us His Son. And then He demonstrated His power by raising Him again. I don’t need to worry about whether or not I will have access to toilet paper or a ventilator. Resource scarcity is not even a thing with My Father, but our world functions within the boundaries of physical limitation. Praying for the professionals serving the sick and those who are vulnerable tonight. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Other Pathways

When I started to wake, but before I could talk, a CNA named Jessie took care of me. One night – it always seemed to be night – she clipped my call button to my blanket and said, “If you need me, press this button. Even if I don’t hear anything, I will come help you.” 😢 she was so kind. I’m learning Cued Speech. It’s NOT a language like ASL, it’s a system of hand movements that boosts lip-reading accuracy from 30% to ~100%. It makes speech visible and provides access to language so that literacy rates skyrocket. *…faith comes by hearing, and hearing by the word of God…Romans 10.17* Wm. M. points out that “to hear” is to receive the word, with an open 💗 and mind, by whatever means. God’s word is living and active and is not confined to auditory pathways. So I’m exploring other pathways just in case. You do cued speech while you speak, so it’s a good starting choice for me – learning it is primarily to help others, but it will also improve my own lip – reading capabilities. The problem is that the vacuum cleaner in my head is very distracting and makes the one-sided loss harder to manage. Also, I must acknowledge that the R ear could go as unexpectedly as the L. So I’m preparing bc there was a time when I could not understand speech. I never admitted it, but it has marked me forever, and I will do what I can to NEVER let that happen again. When Jessie told me to call her, I understood, even though I couldn’t talk. And as I remember her kindness I pray for the world’s medical professionals. Thank you 💗#avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace NOTE: my lips should be shaping a word. Cued Speech requires on the combo of hand and lip movements. I’m working on it. It’s a huge motor skill and cognitive challenge

Isolation

We are all nice and snug at home, enjoying the mandatory break from appointments. PTL Mommy Daddy arranged over the phone to consult after a month, and I am SO GRATEFUL the Lord arranged the timing of this so I got the bulk of my medical rounds done BEFORE we went into seclusion. Chronic illness is already isolating, though, even if you see people regularly. Not to be negative – it’s just a fact. Which is why God taught me the discipline and joy of solitude in the 18 mo. prior to my illness, and why the constant divine dialogue persisted from my Old Life, through the Valley (not kidding ), and continues now: Reverence and comfort combined in an everyday conversation made possible by Christ – Great is the Mystery of Godliness. However, God’s pattern is also to reach humanity via humanity, and the kind and practical gifts of love and service have been so precious since I first got sick. The latest examples were my sweet friends who texted me this week like, Y’all need anything? Can I stop by with groceries? I may not be able to show my gratitude in an equally practical way, but I talk to God all about you and your thoughtfulness. And if you’re able, I encourage you to reach out (digitally) to anyone you know who might be feeling particularly alone. xoxoxo #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

I pushed him back 😑

I’m taking a couple weeks off. It’s better if I stay home with Mommy Daddy, who have canceled Daddy’s appointments this week. 💗 I needed a break, anyway, since I’ve seen SO MANY docs lately. But I’m sad to not see The Guys even though Sister Maria pushed me last week. He was not pushing me to work harder, he LITERALLY PUSHED ME 😑 While carrying an uneven load Zercher style, marching in place w eyes closed (briefly). PT’s have been pushing me around since I learned to sit, but still. He claimed to be training my Fear Response bc my breathing is bad, etc. I pushed him back 😑. Then Jess came to visit and I told on him. Then I told Trainers J and E, the Cafe staff, Driver D, Coach R, and my Dental Hygienist. 😑. But truth be told, there is always pushing & shoving 🤣🤣🤣. Coach R runs a very tight, but less antagonistic, ship. But I’ve observed since 2014 that his methods yield a near 100% compliance rate. I pep talked this one pro who plays abroad but came home for surgery and rehab, Just save everyone some time and do what the man says 😑 🤣🤣🤣. While we pause the BPNA I will do the HIIT cardio they have both recommended. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace