"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!