10 yrs!! Happy 90th Birthday, Ed πŸ’—πŸ€Ÿ

I will rise from waters deep

Into the saving arms of God

I will sing salvation songs

Jesus Christ has set me free…

from “What the Lord Has Done in Me” – Hillsong

I learned to love this song from students at the School for the Blind in Burundi ten years ago. In the 18 months prior to my AVM rupture (April 7, 2011) I filled my mind and heart with good things and when I lost everything I emerged from the Valley with a heart for humanity, a concern for the individual, and this song on my lips. They were among my first words – ask Mommy – when I was just babbling, this came out bc it was top of mind. So much has happened in this decade. Some of you have told me about the moment when you found out I was sick. God knew the circumstances and timing of my illness would be devastating, but that He would make it beautiful. “It is God who arms me with strength and maketh my way perfect.” Psalm 18.32 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

The Nail Prints…

The nail prints are STILL in His hands. As my 10th anniversary approaches, I think more of the great darkness of the Valley. It is never far from me, but I am no longer afraid of it bc I remember so clearly now how the Lord made provision for me, even before I woke up. Still, I have more scars, physical and emotional, than I ever admitted. But I am also clothed with “strength and honor” (Prov 31.25). And the scars themselves pulse with life and power. Surely the power that raised Christ from the dead could have erased every mark of dishonor from His flesh. But the scars are still there. He “bore the cross, despising the shame…” and HE IS RISEN. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

🀟 learning New Things

Learning I could no longer play the piano was more crushing than learning I could not walk bc making music can express what you cannot. And then I realized I could not sing at church. I’ve never been a singer, but I always loved joining my church family in the songs we have loved for centuries and brand new ones. But I had very little voice/breath control for talking, and none for singing. But within months after beginning training w D & R I could sing (softly – Boo boo: you are still an alto) and it took a few yrs, but I could stand to speak publicly and control my voice and breathing. A then I started losing hearing. I play the piano by ear since I cannot use my eyes to read music, and since the hearing is going, my performance has….declined. It’s harder to hear my own voice in my head so my capacity to sing – alto, or otherwise – has declined, too. But Nurse P pointed out to me in #EMDR that although I was scared when I woke up, my body adapted to my new life automatically. My lungs had a TEENY TINY bit of damage on the bottom from the vent, but they figured out how to breathe lying in bed, and then sitting in a chair (that was terrifying, BTW). Eventually, I pushed my lung capacity to the edge then lost it again when my mobility declined as my hearing changed. But the Bottom Line = I CAN LEARN NEW THINGS. I was in Bujumbura with @jjburundi 10 years ago. This pic was the first time I saw anyone sing in sign language – we were visiting a L’Ecole Ephphatha pour les Sourds. And as I learn ASL I am DELIGHTED to realize I am becoming more receptive to ASL worship music interpretation. Music really DOES express what you cannot. I’m warning you, though – in every other context I burst out in very short sentences in an ASL/Cued Speech hybrid. That is NOT a thing. I’m just too slow/new at either to stick to one. And when I say, “short” I mean, SHORT E.g., “Lord, help me.” That’s the first thing I signed spontaneously. And yes, I use it a LOT. || PRAYER REQ: my ears are bothering me and my back hurts ||PRAISE: @erkep got a house!! We are so glad!! xoxo #strokesurvivor #avmsurvivor #lifeismysport #learninghowtolive #shreddedgrace

Feel the Beat…Praise Report!

Top pic: Dancing w Dr. Cheryl @powherchiro and then L foot clockwork πŸ˜‘. Re. dancing: Super Dre @sdpphotostudio was enjoying it way too much 🀣🀣🀣. It’s important to follow the beat. She selected music and played it on her phone. But it’s way harder when you are going deaf. But deaf people love music, too. Apparently one is supposed to feel the beat – relying on the vibration of the sounds. I can β€œfeel” rhythm as a pianist, but as I lose hearing, this is an entirely new ball game. There’s a lot of visual imitation and mental (mis)calculation going on. The learning process is hilarious. Andy Frankenstein did very basic Clockwork with me in 2011 when he taught me to walk. DLee @fyzicalgermantown upped the ante in 2018 when I told him, β€œI need info that will yield a sustainable gait for the duration of my lifetime” πŸ˜‘. Then I started losing hearing and everything got thrown off. So now I’m STILL working on Clockwork – it’s been almost ten years, and the parameters keep on changing. But my capacity to adapt and learn new things is growing, too. πŸ“ˆ Praise: I ran my first mile @alterginc since Nov 2018. No hip pain, greater joint control, reasonable breathing. The breathing thing is a huge confidence booster bc this is the first time I’m exerting myself with 🫁 known to be a tiny bit smushy on the bottom. 🀟. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

He cares

Please pray that God will give me courage today πŸ’—| During a terrifying storm the Disciples woke up the Lord Jesus, who was *asleep* and they were like, DON’T YOU CARE [We are all gonna DIE?!?!]. The Lord Jesus challenged their faith and calmed the storm, leaving the disciples even MORE terrified 😳 bc β€œ what manner of man is this? Even the sea and waves obey Him” 😳. Later, Peter would reassure his readers, β€œHe cares for you.” Craig pointed this progression in faith out recently. (Thanks, Craig!!) I asked Daddy to read me Mark 4 in the hospital 😒. And I just thought to myself, He cares. He cares. It is a HUGE faith challenge to believe He cares for you when your circumstances are bad. And then they get WORSE. And THEN they get IMPOSSIBLE πŸ˜‘. However, this is the pattern of how God does things as outlined in the scriptures. But, while God asks for our faith, He also makes room for our fear, doubt, and grief – and reminds us that definitive proof of His love and power is at the cross AND the empty tomb. Having survived many bad/scary things, it is difficult to hope. This is characteristic of Trauma Brain πŸ˜‘. If you know what I’m talking about I encourage you to simply keep the upwards convo going. Or start it, if you need to πŸ’—. I started knitting to strengthen my mind and hands so I can learn Cued Speech and ASL. This is for my friend who survived *2* AVMs, and is now fighting breast cancer. Burgundy = AVM awareness, Pink = Breast Cancer awareness #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace


The first person to get up in my grill in the hospital was a lovely CNA – J 2nd Hospital. I was just waking up and not producing speech. As she tucked me in for the night she bent her knees and got in my face. β€œI’m clipping your call button to the blanket near your hand. If you need anything, press the button. CAN YOU DO THAT? EVEN IF I DON’T HEAR ANYTHING, I will come help you.” πŸ˜’πŸ’—πŸ˜’πŸ’—. She made it a point to tell me my needs were important although I could not talk. Nights were hardest. I’m glad she worked the night shift. I will never forget her kindness. Mr. D @hyltonjules brought me this Daily Light in the 2nd hospital. I remember his visit clearly and have treasured this book ever since. πŸ’— #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Mask Bracket 😷

If you have any breathing concerns, I recommend a mask bracket! I’m grateful to be able to start moving again in a safe environment.

Thank you, @powherchiro – I can feel the right thing is happening. I just fuss for entertainment value. @sdpphotostudio πŸ˜‘ it’s basically impossible for me to come up with a sassy retort re. Stride length with a hurdler. P.S. I wear a mask bracket to help me breathe when exercising. It helps me not stress about my smushy 🫁 situation, which is minor, but makes me nervous sometimes bc it feels like I’m not gonna get enough air. But there’s always enough if I breathe like @dmurg433 says πŸ˜‘. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Ringing in the New Year

Some incredibly special visitors helped us ring in the new year πŸ’— we are so grateful for dear friends who find safe and sweet ways to celebrate with us during this Pandemic. And we pray for the patients who must be alone in the hospital or nursing home πŸ’— and the healthcare workers who care for them. Xxxooo Thank you πŸ’—πŸ’—