"The night is dark but I am not forsaken

For by my side, the Saviour He will stay
I labor on in weakness and rejoicing
For in my need, His power is displayed

To this I hold, my Shepherd will defend me
Through the deepest valley He will lead
Oh the night has been won, and I shall overcome
Yet not I, but through Christ in me"

Cityalight wrote these words in the Hymn "Yet not I but through Christ in Me".

They resonate in me.

Laboring on in weakness AND rejoicing.

A dear friend recently reminded me that the Kingdom of God is all about reversals and "upside down".

Like the ways that the Creator King can allow open life and spent withering to be displayed simultaneously in His Creation.

Both.

Both weakness AND rejoicing for in OUR need HIS power is displayed.

May this be true of us in these days of weakness AND rejoicing as my Mom lingers on between the spent withering of this life and the OPEN GLORY OF ETERNITY.

Please continue to pray for us and to ask the Father to lead us through this valley.

She is not in pain, sleeps 23 or more hours a day, and is only drinking average of about 7.5 ounces of water a day.  She and I have never lived a June like June 2022.

Jesus is near.

Orange is her Favorite!

What a resilient woman she is!

During the summer of 2020 in the midst of a global COVID19 Pandemic we celebrated her 81st birthday with an "Orange" Party!  

I love this photo of her.  I have been missing her for so many years and her smile is a glimpse into the VIBRANCY that her heart and life were before her diagnosis in 2008.  I want to reiterate today to myself and also  here where I have been writing off and on since that time, that God has led us EVERY STEP OF THE WAY and HE WILL NOT ABANDON US NOW!

The estimate is that 700,000 Americans have Normal Pressure Hydrocephalus, but it is most often misdiagnosed.  What an incredible Father we have who has helped us navigate accurate diagnosis, brain (shunt) surgery, and the living since then.  I wanted to raise awareness about Normal Pressure Hydrocephalus today.  Following is a bit of information about NPH.

NPH is not who she is just like Orange is not who she is.  But BOTH are a part of the story God is uniquely telling through her.  Her Author is still writing today! This is taken from the Alzheimer's Association:

About normal pressure hydrocephalus

Normal pressure hydrocephalus is a brain disorder in which excess cerebrospinal fluid accumulates in the brain’s ventricles, which are fluid-filled chambers. Normal pressure hydrocephalus is called "normal pressure" because despite the excess fluid, CSF pressure as measured during a spinal tap is often normal. As brain ventricles enlarge with the excess CSF, they can disrupt and damage nearby brain tissue, leading to difficulty walking, problems with thinking and reasoning, and loss of bladder control.

Normal pressure hydrocephalus can sometimes be treated with surgical insertion of a shunt, a long, thin tube that drains excess CSF from the brain to the abdomen. Surgery is most likely to help correct difficulties walking, but thinking changes and loss of bladder control are less likely to improve. Shunting doesn’t help everyone with normal pressure hydrocephalus, and there’s uncertainty about how best to identify those most likely to benefit. There’s also a lack of data showing how long the benefit of shunting may last for those whose symptoms improve.

Prevalence

Normal pressure hydrocephalus primarily affects people in their 60s and 70s. The Hydrocephalus Association estimates that nearly 700,000 adults have normal pressure hydrocephalus, but it is often misdiagnosed as Alzheimer’s or Parkinson’s disease. In fact, less than 20 percent of people with the disease are properly diagnosed. In some cases, normal pressure hydrocephalus is caused by other brain disorders such as a tumor, head injury, hemorrhage, infection or inflammation. But in most cases, the cause of the fluid buildup remains unknown.

The following symptoms are considered hallmarks of normal pressure hydrocephalus:

• Difficulty walking that's sometimes compared to the way a person walks "on a boat," with the body bent forward, legs held wide apart and feet moving as if they're "glued to the deck."
• Mild dementia that involves loss of interest in daily activities, forgetfulness, difficulty completing routine tasks and short-term memory loss.
• Decline in thinking skills that includes overall slowing of thought processes, apathy, impaired planning and decision-making, reduced concentration, and changes in personality and behavior.
• Loss of bladder control, which tends to appear somewhat later in the disease than difficulty walking and cognitive decline.

Diagnosis

Because the symptoms of normal pressure hydrocephalus are similar to Alzheimer’s disease, Parkinson’s disease and Creutzfeldt-Jakob disease, normal pressure hydrocephalus is often overlooked or misdiagnosed. The three hallmark normal pressure hydrocephalus symptoms are considered the “classic” clinical picture, but not everyone with normal pressure hydrocephalus experiences all three symptoms. 

In a Mayo Clinic study, among 41 older adults with suspected normal pressure hydrocephalus, all had difficulty walking, 30 experienced cognitive decline, and 14 reported loss of bladder control. Only 12 of the 41 had all three symptoms.

 Artist Julio Romero de Torres created this piece of art in 1904 and entitled it "Horas de Angustia" which means "Hours of Anguish".  Here are words penned about this piece "The scene represents the pain of a young mother before the humble bed of her sick son, who is torn between life and death."  

When I found this piece online this week I was doing some work with the word ANGUISH as I am studying in Galatians 4.  I was thinking about different forms of anguish.  But this image helped me to articulate to my own heart what the last 2 weeks have been like with my Mom, Anne.  

Though she has been walking through the narrowing path with frontal lobe dementia, presented as a symptom with her Normal Pressure Hydrocephalus since her 2008 diagnosis, over the last 2 weeks she has had a more sudden decline.  We are thankful for Hospice of Chattanooga that has walked with us for the last two years, especially in the face of a global COVID19 pandemic.   Now she is only in her bed and has had significant drop in food and water and then with no traceable pattern she has surprising days of "rally" and "lucidity" and more food.  

It is not that our "chores" as caregivers have increased, they actually have lessened, but it is the wondering and wrestling as she seems "torn between life and death."  This is the weight of the wait that we are experiencing and this is the weight I see here.

In one of the many resources I have received as a caregiver I read this quote written by Etty Hillesum who would eventually die in the Auschwitz concentration camp.  This is what she said as she contemplated her own death.

"The reality of death has become a definite part of my life; my life has , so to speak, been extended by death, by my looking death in the eye and accepting it, by accepting destruction as part of life and no long wasting my energies on fear of death of the refusal to acknowledge its inevitability.  It sounds paradoxical: by excluding death from our life we cannot live a full life, and by admitting death into our life we enlarge and enrich it."

MANY times over the last three years, Mom has sang about and talked about her eager readiness to move from life here to life in the Kingdom of God.  Here in the last two weeks she has expressed to me and in prayer her excitement and hopefulness about "finishing her race."  

I don't know when that will be.  And I see her visible glory fading like a flower, while her invisible glory is intensifying!

"As for man his days are like grass.  As a flower of the field so he flourishes and the wind passes over it and it is gone and its place remembers it no more.  But the mercy of the Lord IS from everlasting to everlasting on those who fear Him, and His righteousness to children's children, to such as keep His covenant and to those who remember His commandments to do them.  The Lord has established His throne in heaven and His kingdom rules over all." Psalm 103:16-19 

I have described to some that this anguish feels like thinking you are running a marathon only to find out right at the final mile that it is really a 100 mile race.  Lament and sweat and anguish and endurance are required but the Holy Spirit in us is helping us in facing it head on and in pouring our hearts out to the King and Lord of all life and death and knowing that HE IS IMMANUEL.  He is CHRISTUS VICTOR who has conquered death for us!  

In the tearing.  In the weighty waiting womb.  In the fading field of flowers.  We stand in awe of His nearness and HIS RULING PEACE.  His timing for Aurelia Anne is established and He is on HIS THRONE.  We are HOPE FILLED even in these "hours of anguish" and she is peaceful and we are peaceful even though we WRESTLE.  

Over 15 years ago when she told us she wanted to die at home we could not have imagined what the path would look like, but HE DID and HE DOES.  

Would you pray that we will continue to be flooded with His unfailing love and mercy (HESED) and that we will "keep the charge" (Numbers 9:22-23) as we increase our trust in His moment by moment directives?  We covet the intercession!

I may increase my words here on this "Hello Love" blog as I continue to ponder the legacy that Mom has left me with in not excluding death from my heart and our home.  O Jesus, enrich and enlarge us this very hour!

In the Waiting

involuntary - adj. a)not done of one's own free will; not done by choice.

quarantine - n. a)the period, originally of forty days, during which an arriving vessel 

suspected of carrying contagious disease is detained in port in strict isolation.

dementia - n. loss or impairment of mental powers

My 80 year old mother is so beautiful.

She is waiting.

She has never lived through a Pandemic, though her maternal grandfather died 

in the 1918 Pandemic that swept the world.

This morning I spent time listening and pondering with the Holy Spirit

about the involuntary "quarantine" that comes with dementia.

The World Health Organization (WHO) says nearly 50 million people worldwide have some form of dementia.

This number is set to triple in the next 30 years by 2050.

There are nearly 10 million new cases worldwide every year.

https://www.who.int/docs/default-source/infographics-pdf/dementia/dementia-symptoms.pdf?sfvrsn=7ef38c21_2

When a person experiences any form of dementia, it doesn't fit the historical definition of a "quarantine" lasting 40 days, though it does fit the definition regarding some forms of isolation.

Because of our current Covid19 Pandemic, that seems to especially affect men and women over the age of 65, who have differing pre-existing conditions, I have been thinking even more than normal 

of my Mom.  

She was diagnosed in 2008 with Normal Pressure Hydrocephalus which has a presenting symptom of frontal lobe dementia.

This morning as I was running and reviewing God's faithfulness,

I was struck with how little my Mom's life will change in the current

"isolations" and "distancing" that are unfolding in our global neighborhood.

I have shared with her about Covid19 and we spent time together

yesterday, on the National Day of Prayer,

reading Exodus 17 together and then live streaming our church's worship service.

She colored quietly on the corresponding page showing Moses striking the rock,

while I took notes as our pastor, Louis Belva, taught from 1 Peter 1.

She was peaceful and quiet as she colored diligently.

She is not fretful about Covid19.

But this morning my heart was so struck with several thoughts about other elderly men and women around the world who are now in even more isolation than they normally experience and especially those like my Mom, because of their "involuntary quarantine with dementia."

Here was the contrast for me - 

In a very short span of days our lives as "healthy" humans -  have gone from

"busy to still".

Many things we rely on for both work and pleasure have drastically changed - almost overnight.

Though dementia is typically much, much slower than this....

it is similar.

The things that made up my Mother's "normal" living have been gradually stripped away.

In 2050, if I am still alive,

I will turn 83 years old.  Statistics say at that time 150 million people will suffer the isolation of dementia.

This morning as I ran with Damon on Signal Mountain with the fog in my face and the wind in my lungs, I wondered if my Mother had known 30 years ago (during the spring of 1990 when I was planning for my wedding on May 26) that she would experience this

"involuntary quarantine" of dementia

if she would have done anything differently with the time she had?

Then I recalled all the conversations and laughter and prayers and tears together with her.

I recounted the photos and stories that she has shown me and told me and recorded in her own handwriting.

I thought of all the handwritten notes she has written and how she spends her days now,

in her waiting,

with reading and writing poetry and creating works of art in the form of name puzzles and through bright coloring.

And out of these thoughts and conversations with the Lord,

flowed these words.....

A percentage of the elderly of our global neighborhood are already living most of their days in a fog of isolation of various forms.  They didn't choose that for their story.  

For those of us who see our lives "instantly" readjusting with the circumstances of Covid19 - how can we love them and learn from them?

Loving them....

This may sound so oversimplified, but we can pray for them.

• Who are the men and women above 65 in my life?
• When is the last time I thanked them for investing in me or let them know I love them?
• How can I intercede for not only their physical health and protection, but their need for human contact and encouragement?
• Who are their caregivers and how can I pray for them, whether they are a married couple caring for each other or cared for by others?
• Can I find a way to communicate to them that they are not alone and that God is near?
• What would that look like?
• As I wait with my Mom can I elevate her needs over my own, even if it means that I will encounter forms of "quarantine" with her even though I currently have neither Covid19 or Dementia?
• Do I view her needs, as someone weaker than I am physically, as something that irritates me because it is interruptive?
• Can I be poised to serve and encourage these men & women later in upcoming days, weeks and months when Covid19 is not so "pressing" or will I just switch back to my norms?
• Can children and students who are desperate for ways to fill their time be creating works and words to bless the elderly in our families and community?

Learning from them....

I have so many words and thoughts about this because it is where I live as a fulltime caregiver for Mom.  

Again, this may sound so trite - but will I learn from her and "Seize the day"?

What if there are decades ahead FOR ME where I am not able to :

• Remember key stories of God's work in my life
• Dress or bathe myself
• Drive
• Have a conversation for more than a few minutes
• Make decisions about any area of my life
• Exercise vigorously
• Express a full range of emotions 
• Engage and listen carefully with learning
• Comprehend what I read
• Follow the storyline of a movie or documentary
• Choose what and when I want to eat

Would I live differently in 2020, even during the upheaval of a Pandemic, if I knew that I still have the abilities to experience these gifts of grace? 

It becomes MORE personal now as I sit here at our home, Beacon Hall, and type these words.....

• Am I fixing my gaze on what God is allowing me to do today and valuing it as a gift of His grace?
• Am I learning about how to care for my body, this temple of the Holy Spirit, in a way that impacts me as an 83 year old?
• Am I using the time given TODAY to eat, sleep, exercise vigorously and entrust myself to God even in the middle of so many uncertainties?

Tomorrow is no more uncertain, really, than it has ever been in my life before.  I have never known what tomorrow would hold.  But Jesus gave me clear comfort that He knows and has overcome the world and I am able to wait and take heart because of that truth. See His words in John 14:27.

I have been compelled today to add to this blog that I began when I was in my 30's.  Today I am 52 years old.  83 is not really that far away.  Wasn't I just getting married in my 20's?

My Mother has been such an incredible instrument and blessing in the hands of our Redeemer to transform me from the inside out.  

WHAT IF I am just being given a tiny taste of what her current reality is to increase my compassion for her?

Days of unknown are ahead for both of us, but while I am able to "Remember and Tell" about the trustworthiness of God, I want to do it.  

• I want to recount His nearness in ALL circumstances.
• I want to rehearse His grace today.
• I want to rewind and investigate His intimate care over the widow and the Fatherless.
• I want to exalt His name above ALL.

Together....the generations...

"Wait for the Lord, be strong and take heart, YES!  Wait for the Lord!" Psalm 27:14

Ten years of practicing together at Story Cottage!

"The practice of resurrection begins in household and workplace.  And we never graduate to higher ground.....practice immerses us in named people, specific tasks, the stuff of everyday." 
- Eugene Peterson in Practice Resurrection 

Ten years ago TODAY my mother, Anne, had brain surgery for her condition of Normal Pressure Hydrocephalus.  We have been learning together for a decade of the "stuff of everyday " together here at Story Cottage.  God has immersed us in practice.  Some days it has been a normal routine and some days it has been difficult and discouraging.  

This morning our precious friend, Ginny, reminded me of this day of remembering and celebration.  I had forgotten.  In the stuff of everyday I had not held onto the date of April 3 this year.  I knew it was ten years ago, but I had not held onto the date in my mind.  Because my friend took the time to remember and then prompted me to remember, I got to practice helping my mother remember.  When I asked what she recalled about that day, she said she didn't know.  I reread this blog and we recalled how God had cared for her and carried her and will carry her.  

Story Cottage has been the place that I have learned about caring for my mother and my inadequacies and God's sufficient grace.  He is now calling us away from Story Cottage to a new home on Signal Mountain.  God has provided a new call for Damon and later this spring will bring a move for us. Today I am recalling how this is a specific place where I have been immersed in watching how intimately the Lord proves that He is a husband to the widow.   

On this sunny April day we talked together about how much we will miss Story Cottage.  We also talked about the new place and tasks and stuff of everyday that God will give us to continue practicing together.  I want to practice this resurrection.  He is able and this resurrection power is at work and available and I will never graduate to any higher ground than the sacraments of the ordinary turned extraordinary.  

It has been an extraordinary decade.  Jesus, I stand in awe of you!

I began this place of sharing stories about my Mom, Anne Johnson, more than six years ago when she was diagnosed with Normal Pressure Hydrocephalus.

https://www.lifenph.com/about.asp

Today this beauty celebrates her 76th birthday!  

God has invited the two of us to continue our journey forward as I am now at home with her overseeing her daily and full time care where she lives here in the apartment we had built in our home.  Since God confirmed this to me in February of 2015 I have been learning more about dementia (one of the results of NPH) and facing the inadequacies that I feel as a caregiver of my widowed mother.  Reading, attending classes, asking questions, and wrestling to understand what medical professionals and hospital chaplains call a healthcare crisis today (Alzheimers and other forms of Dementia).  At present more than 5.2 million people in the US have Alzheimers and other forms of Dementia.  An estimated 35.6 million people worldwide have Alzheimers and other forms of Dementia.  By the year 2050 the forecast for Alzheimers disease in the US is 13.2 million people.  I notice God giving me the breath by breath grace to learn and lead, teach and tend.  

Many people have asked me what I am doing and why I am not teaching.  I believe the things I have been teaching our sons and the five years of students in classroom settings have been preparation for teaching my Mother now as her mind slows down.  I remember three years ago when I began learning and teaching Latin.  Learning a new language to teach it was very stretching for my mind.  I notice I am learning to speak the “language” of dementia.  Many of the songs, poems, stories and recitations I have taught children ages 3-10 years old - are also excellent to share with my Mom.  

This summer I taught her how to cross stitch for the first time during our daily learning class.

We enjoy patio picnics daily!

Sunshine for Vitamin D and lots of water for hydration are important parts of our routine each day!

She continues to create with the new things she is learning.  Watching her stitch and sitting with her in the “silence” she says she needs to concentrate has already humbled and taught me much.  This is what she “gifted herself” that we created together for her birthday!

On Monday we will continue our “Story Cottage School” with American History beginning with Jamestown.  I do not know what I will learn or what I will receive - or what Mom will learn or receive - but I walk by faith that Jesus will supply what both of us need in our desperate neediness as we continue to say "Hello Love" to the RICHNESS He is pouring out on us in our poverty!

Thank you for praying for us!

Mother's Day 2009

What a wonderful gift to celebrate Mother's Day 2009 and Thank God for the way He has poured out His mercy and grace over us as Mothers. During our Sabbath meal we were honored by the men in our families with chocolate covered strawberries...yum!! There were four mothers honored that evening. Rhonda Turner, Damon's oldest sister, Ailish Atkinson, our dear friend from Wallington, England, Lea Kelly (me), and Anne Johnson.

My mom, Anne, is gradually healing and we are thankful for the great report she received a few weeks ago at her check up! She has another CAT scan and check up on June 2. We are watching and waiting to see all that God has planned for her now! Thank you for your continued prayers for all of us! We have so so much to be thankful for!