July 13, 2017
Today, for the third time in a week, I truly thought that we
had lost Edy. He frequently has episodes
where he tenses up, and forgets how to breath for second, then a minute, and
sometimes more at a time. He tenses up
every muscle until his hands fist, and turn out, and his arms and legs shake
with the force of his clenched muscles.
His face turns blue then grey, and as the color leaves his face, my own
breath stops as well. All of us here
have held him during one of these episodes, and eternity stops and is
compressed into seconds and minutes until he breaths again. On bad days, he will stop breathing from many
times a day, and frequently now he will cough without passing any air. So understand it when I say, we know what his
episodes look like. We have loved him
for over a year, and have learned how it feels to wonder if he will breath
again, or if at last this is the final breath he will release. But as bad as those moments are, we have all
had hundreds of them. And although some
of the panic has been pushed a little farther form the surface with time, it
still resides there every time. We have
seen his good days, and his bad days. We
know that he suffers so much in this life, but God also gives him some moments
of pure joy. But we know that his good
days here will be nothing next to the eternity he will have after this
life. So though we love him dearly, and
fight down the panic every time he stops breathing, we also think of the life
he may be on the verge of reaching; a life free from pain, spasms, chocking,
coughing and seizures. And then he
breaths again, and we are flooded with both relief that he is still with us,
and sorrow that he is still hurting so deeply in our arms.
So today when his episode was different, and I truly thought
he was gone, my mind raced, capturing a moment in eternity. In that moment, I knew every detail. I saw my friends, our nanny’s, watching Edy’s
face, and searching mine. I saw the
lines in the concrete stairs, and wondered if I would forever remember this spot
at the top of the stairs like I will remember in eternal detail the front
doorway where we collapsed when Angelita breathed her last, or the table where
we fought so hard and long for Maggy, or the place we sat on the couches with
Micah when he finally was free from suffering.
Would I remember it like I remember where I was when I heard that
Esperanza and Thania had died? Or my
friend Manuel? Or where I was when I
learned that my friend Cody, or my cousin Gavin had died?
We have been touched by death. And it isn’t what I had thought. For these children in our home and in the
villages, it is a freedom from a lifetime of pain and suffering. It is a fulfillment of the hope which we
seek. “For we do not mourn like those
who have no hope”. We will meet them
again in the wholeness.
All of those things flooded my head an hour ago when Edy
didn’t start breathing again after he lost consciousness and grew limp. And then another eternity of time through
seconds passed, and he breathed again.
And then he cried.
And I know that when he is crying, he is breathing.
Tomorrow we leave for our third medical clinic in Escuintla
this week. These are incredible, and
challenging. It is challenging because
of the language barrier, and much more.
The first clinic day, I served as my own translator for much of the day,
which was both terrifying, and encouraging.
I also ran my own medical station, which meant that for most situations,
I had to rely on my own medical judgement.
Again, both terrifying, and encouraging.
I have frequently described some of the situations that occur in
Guatemala even in hospitals. So although
in the states I would never presume to do something like this, there truly are
no good options for people living here, and I am slowly learning how to operate
more independently here.
We are able to help so many people. But there are so many people whose problems
are too great. People who we can’t
help. An older diabetic lady who will
never get the insulin she needs, or a child we suspect has muscular
dystrophy. An unfortunate aspect of my
character is an inability to shake off the people we can’t help and focus on
those who we can. The reality is, we
have lost friends here who could have been helped if they were in the
states. A mother of one of our children,
whose blood sugar topped out my meter anytime I would check, died in December
because she could not get insulin, and would not have had refrigeration to
store it if she had. We encountered a
boy at the clinic on Monday who has a sunken in chest which in his climate will
lead to chronic lung infections, and may likely lead to his death, like it lead
to death of a little boy we loved in La Gomera who also died in December.
On Monday we had to turn away many people because although we
saw patients an hour after we said we would, we had to leave, and people still
were waiting since the morning hours. It
is they that I think of, not the child with parasites who received medication,
or the mother of 5 who received an antibiotic to combat her urinary tract
infection.
On Wednesday, we were in another village that boarders a
dump. The families here work by
scavenging the piles and piles of trash hoping to find items to salvage and
sell. It is long hot work in the sun in
a humid climate. Many families work the
dump together, and bring their small children into the piles as well because
there is no safe place to leave them.
One family we work with has a particularly sick little boy, and among
other reasons, she fears taking him to the hospital because he was born on the
floor of her house and has no papers—because when she called the ambulance,
they would not come there at night. She
fears that the hospital would take him away if she took him there. The adults all yell for the children to run
whenever a government vehicle comes by because they could take the undocumented
children away.
Every child we saw was in need of vitamins. But sadly the vitamins we carry are only for
adults, and unsafe for children under 4.
This is especially sad because we used to receive children’s vitamins as
an overflow form a U.S. company. Our
supply ceased because the company stated that they were unaware that their
vitamins had been sent here, and they did not want their vitamins to be sent to
countries outside of the U.S. Forgive my
bitterness in this statement, but it would appear that the children of
Guatemala are less important than the children of the United States in the eyes
of this company. This is sickening.
This village is separated some from the surrounding areas,
and has few tiendas or places to buy supplies or food. The malnutrition rate here is extremely
high. One third to half of the children
we saw were malnourished. We saw rotten
out teeth in 3 year olds, deep creases and hardened fingernails, and copper
streaks and thinning hair in a community who should have thick black hair. We saw children who did not have the energy
to run and play, and one child who was unresponsive because she had not eaten
in three days. Neither had her siblings. And their mother gave them her food and went
without many times.
Our team from the states here to help run the clinics was
shocked. They had never seen a story
like this in person. In no time they had
emptied every bag they brought of granola bars and chips they had for
snacks. What an incredible heart. They had seen the heart of God. This was the first time they had seen true poverty. But it wasn’t ours. We know of so many stories of pain,
injustice, homelessness, poverty, malnutrition, hunger, abandonment, abuse, and
social injustice. But it still moves us
to our core. Every single time. These are God’s children. Forgotten by the world, but not alone.
So this is all so very heavy. Edy, and our terminal babies in casa 2,
malnourished children and chronically sick adults, abandonment and the plight
of human suffering. May God never harden
our hearts so that they get used to hearing stories such as these. He desperately loves every last one of these,
his children. And every story, every
single life is incredibly precious.
Every single story breaks his heart.
To cry for them is to have a taste of the heart of God.
May we never stop crying for the pain of His children.
Tomorrow we go again to this community surrounding the dump
for our third and finally medical clinic this week.
July 18, 2017
Morning:
Today we learned that Ruth, a little girl from San Pablo, is
finally at rest. She suffered from
extraordinary seizures that took from her speech, her ability to walk, and her
ability to eat by herself. Last week
during their monthly trips to San Pablo, Joel (co-director in the ministry)
sent us a disturbing update that she was not eating much formula either, and
was wasting away. The picture he shared
was shocking. This was no longer the
little girl I had once played with. She
was a layer of skin stretched over her bones.
She had no strength to move her own body, and she was so malnourished
and emaciated that no photo I have ever seen of malnutrition came close to
hers. She is finally free and She is
finally free and walking and talking again.
Please be praying for her family.
Nothing about this is easy.
Night:
Tonight we had another hour plus attempt at feeding Edy an
ounce with meds. During these attempts,
we will sit and drop drops of his meds and formula onto his tongue at a
time. This is a frequent struggle. Some days, Edy drinks 5 ounces quickly, and
with ease without aspirating a drop. But
most days, he struggles at some point with drinking, and frequently these last
few weeks, he has had less than 8 ounces In a day. Some days less than 5. Tonight, after placing just three drops on
his tongue while he sat upright at 90 degrees in my arms, he began coughing and
aspirating his saliva and the meds.
During one such bad feeding like this, that can happen a few times. But tonight he aspirated on three drops for 5
consecutive attempts.
Tomorrow we are placing a feeding tube in Edy. I’m
devastated. I was not quite ready to
hear it, but I knew it was coming. I was just thinking he needed it for meds.
But they Daryl explained that, although we knew he was dying, we didn't want to watch
him waste away.
We did not share the shocking pictures of Ruth from San
Pablo who died last night, but Joel sent us the photos last week when he
visited. And I have never seen someone so emaciated in my life. Not in any
book, not here. And I have seen terrible malnutrition and emaciation. But the worst part was that I could remember
when that tiny skeletal face was full, and when she could walk. And when Daryl
said why we needed to place the tube into Edy, I know he was thinking of her
too. We can't watch Edy slowly starve to death.
But this is killing me. His
breathing just gets worse and worse and every day he is doing something else
that is new and scarey. Now so
frequently his chest and muscles will expand like he took a breath, but he
passes no air, just a short sound like a tiny bit of air has squeezed
through. And then he releases his
muscles like he is exhaling, and then expands his chest again as though he were
breathing, but he is not. For months
when he is not breathing well his whole head bobs up and down because he is
using the wrong muscles to breath with to help his diaphragm which alone does
not do the job. The entire shape of his
chest is deeper than it is wide because of a lifetime breathing with these
muscles. We hope that the tube will help
him maintain his weight, and that it will not increase his respiratory
problems.
July 27, 2017
Yesterday we finally saw another Edy smile. We all live for, and celebrate “happy Edy
days” Last night however, we had to
remove Edy’s NG tube overnight because his breathing had deteriorated so. He is doing better again today.
Over the last few months, a few thins have been impressed on
my heart, and a few things have become apparent concerning my short term
plans.
First off, I am very nearly finished with my BSN, the
bachelors degree expected of Ohio Nurses to obtain within 10 years of their
graduation as associates level nurses.
If all goes well, I may finish as early as December, although this final
semester needs to be in the states.
However, there are many complications associated with schooling online,
and there may be a number of complications with the university, and a few
personal obligations as well, which may push my graduation date back until
May. In either case, God has made me
aware to an opportunity to work with the Spanish speaking community in a small
town in Tennessee called Lebanon. There
is a ministry here which works with people fresh out of prison to disciple
them, and help them reintegrate. Cross
Style ministry also hopes to reach out to the Spanish speaking community to
welcome them and serve them. One
potential goal is to help many who work so hard obtain their citizenship. While working here through the end of my nursing
schooling and continuing on into May, I will also be taking classes in
ministry, an opportunity I look forward to as I have never had any education in
ministry.
***To be clear, One does not need an education to serve
God.***
But I look forward to this privilege while finishing formal
nursing education, following up on a few personal obligations, and working with
the cross style ministry.
After this period, I will be returning to Guatemala by the
grace of God, and I am very excited for all that is happening here, and all
that will be happening in my absence as well.
Here are some of the changes: Stefanie Konrad, a Canadian
nurse, and midwife will be joining Hope for Home ministries and begin working
to train other midwives. In perfect
timing for her arrival we learned that Building Guate, has space on their
property, and will soon begin the construction of a building that they will
work with to use as a station for midwives complete with a few hospital beds,
and a space for the midwives to stay nearby for long labors. This area is truly God appointed. We have been working off and on with Building
Guate through teams visiting, and their help in finding a few families in the
dump with children with special needs that we now work with. They have helped in transportation to and
from appointments, and in reaching out to this community. Now, it will be expensive to furnish and
supply such a station. But God has shown
in advance that nothing is too difficult for him, and we learned through
friends and fellow workers here in Guatemala, that there is a group who wish to
get rid of a number of birthing chairs.
They don’t want them, but we sure do!
Truly, our God provides!
To read much more about how this vision has grown over many
months, please read the director’s blog about the medical clinics, and the
future of our ventures into maternity and care of this at risk population. http://hopeforhome.blogspot.com/2017/07/when-god-shouts.html
July 27, 2017
Yesterday we accepted another baby into hogar 1. He is 3 months old, and we are told that he
has hydrocephalus and a shunt already placed.
I believe he may also be on oxygen, although details are always
confusing in a house with so many people receiving information from a system
with so many kids! He sould be coming on
Saturday!!!
A few weeks ago we shifted a few children to help us give
better care to the children in both homes.
Our Merlyn and Genesis moved to hogar 2 who had only tiny babies and
older children, and Walter moved into hogar 1 to be closer to our medical
equipment. Walter is 15 years old, and
is very twisted from CP. He has a G
tube, which is a feeding tube which was surgically placed directly into his
stomach. This is the same tube we hope
to get for Humberto and Ruavis because NG tubes, the tubes that travel through
the nose into the stomach, are very hard on the soft tissue of throats, and can
cause more respiratory problems. Now we
have 4 little boys receiving their food through tubes. We have been working on helping Walter gain
weight.
