every last breath is sacred

Sometimes I feel like my world gets so small here. I have traveled back and forth weekly, daily, in a 20 mile range. I have spoken to the same 15 expats and had the same Portuguese conversation with every Mozambique because that's all my language abilities allow for me. I haven't watch anything outside of kids movie or episodes of the Big Bang theory (I'm not complaining-- bring on season 7) for well over a year. I'm bad at reading the news because the time I take to sit at my computer I get distracted and would rather read a blog or shop through TitleNine. But recently, through some blogs I got sucked into the news and followings of dear Brittany Maynard. For a few weeks I would wake up, Googled her name to see what the latest was. And, like many, my heart broke when I heard that she had died. As a hospice nurse and a strong believer in the philosophy of palliative care and hospice, I got all heated up many evenings as I read the latest. I know that I have only heard a fraction of this story because I'm not in America at the moment to understand what's going on. But I couldn't help but think, why is palliative care and hospice not being spoken of? Why is the palliative care model of "there's never nothing that can be done" not being considered? I know that I've never walked with cancer or had someone closest to me suffer and walk the difficult journey, but as a hospice nurse I have walked with many. And, each patient that I have cared for I have considered it an honor to believe that there's ALWAYS something we can try to alleviate suffering. I have worked with hundreds of amazing people who also believe in this philosophy and have dedicated their lives to palliative care and hospice. I have been taught by many the beauty that we can't always take away the problem but we can ALWAYS walk along on the journey.

Through all of this I have been moved by others who are walking similarly challenging paths of cancer like Kara Tippetts and Maggie Karner. Their approach to their prognosis is completely different than Brittany's. They desire to make the best of every moment that they are allowed. I think they would say that yes, cancer is robbing them of many good things but they are choosing to fight the devastation to the very end-- trying to milk every last drop of goodness from their sweet lives. As a semi-newly-wed I can't imagine giving up even one second that I could possibly have with my husband or any of my family and friends. And, as a hospice nurse, I know there are many with great passion to turn life-robbing diseases into journeys of peace and, quite frankly, filled with dignity. And, when done well, this can be strikingly beautiful.

My perspective also changes as I step out in palliative care here in Mozambique. In a nation where the life expectancy is 49 years old (UNICEF, 2012), where the pain medications available are Tylenol, Advil and diclofenac, I think it's fair to say that there are loads of people here that would willingly sign up for a program that promises to say "we will walk with you and never succumb to saying, 'there's nothing we can do.'" Because there's always something, at least in America, there's always something. I think the difference is that here in Mozambique the attitude is always (or most often) "That's life. What can you do?" Burial after burial all that one can do here is keep walking on in hope. And they do, they are always hoping for more. And, in America the moment we feel like we've lost "control" we fight to gain that control back. When really, we weren't meant to be in control (nor do I want to be in control of my life because, it's guaranteed, I'd goof it up. I hope my life is an example of that, by giving up "my" control and having faith in Him who loves me and always has good planned for me (us). My life is far greater than what I could have accomplished alone.-- that can be another blog:) Each breath is counted, each breath is valued-- whether here, where too many breaths are cut short, or there, where we (try) to "control" our every breath-- every one is held. Every one is precious and every one is Holy.

Try explaining health care options including physician assisted-suicide to a nation with a life expectancy of 49. Life's precious my friends. I only dream of giving people here a few more years, days, seconds of sacred breath.

So, now, as I close my computer, leaving the land of "control" on the other side of the pond, I enter back into my world of a 15 mile radius without the options of treatment or choices. As I do, I pray for those with cancer, those with AIDS, those children dying of malnutrition. I pray that someone near to them will walk closely on their hard journey noticing every breath, holding every moment and recognizing the giver of every good gift.

Because, Dear Ones, they are indeed, sacred. Every. Last. Breath.

Scriptures to consider: Psalm 103, Psalm 139, James 1:17

I pray every last word here is accepted with deep love and care.

well done God

I would just like to say, "Well done God!"

You're laughing?! Well, did you know that God was going to have me here for what felt like an eternity to then eventually bring me "the one my soul loves"? Then reignite my passion for hospice and palliative care? Did you know that "the one my soul loves" would not just bring me great joy and deep love but that his ministry, that he's dedicated his life to, was going to complement mine perfectly and make both all the greater?! If I can depict what happened on Tuesday you'll say it right with me, "Well done God!"

We carpooled on Tuesday so my scheduled visit with "my little guy" involved Chad and another friend. We didn't know if he'd be home but we wanted to just pop in and see how he was doing. Chad was locking the car and lagging behind. Rebecca, myself and another friend started down the hill to his house. We were discussing whether or not we thought they were going to be home when I started hearing singing. My senses were taking in so much that I actually felt confused. I swore I heard Rebecca singing but that wasn't possible, she was just 5 feet behind me walking down the trail. Just then, in my confused state, I heard Chad from about 50 meters back, "He chasing you from behind." Having recognized him from photos, Chad knew the face that jumped out behind the banana tree. After giving a friendly wave he started chasing after Rebecca and the white girls!

Sure enough "my little guy" came jogging down the hill with the Audio player (from inside his Wildlife Story Teller-- stuffed bear we gave him) loudly playing the recording of Rebecca and others singing praises to God and telling Bible stories. I wish I could journey you more closely along on this story for you to fully understand the beautiful depth that was encompassed in this moment! He was radiant! Sure his shirt hadn't been changed or washed since I saw him last week but he was a different boy! And, I think this day was different that it would have been 6 weeks prior. His life is changing.

I don't really know but I imagine that this is how his morning had gone. Old grandmother needed to go to the field to work the land or there's going to be no food this year. "My little guy's" too unwell to be of any benefit in the fields. I'm guessing granny said, "'Little guy' you stay here, don't get in any trouble you hear?" She locked the door to the house of mud bricks and tin roof, off she went and there he sat-- grateful. At least now he had stories and songs to listen to. By mid-afternoon he probably got bored of sitting under the mango tree. He decided to wonder around a hundred meters or so from his house, but of course, he kept his treasure of hope playing in hand.

And then, a big green car pulls in, parks under the mango tree and white people come out. I'm sure he thought, "I've never seen that big car before. I like riding in that small purple one." Then, he saw from afar his new friend Tia Rebecca and Tia Dara and there were 2 other white people!!! And, "THEY CAME TO SEE ME!!!!!! I better run to them, I don't want them to think they've missed seeing me!"

And, so he came through the banana tree, listening to the hope of Jesus and, quite frankly highlighting 3 white peoples week and touching one Mozambican's heart! This brings me back around to saying, "Well done God" for bringing my heart together with my husband's to literally change the life of one little palliative care patient in a Mozambican village.

"WELL DONE GOD!!!"

he's known

Let me tell you about my day...

On Friday, I arose early, before Chad and even before Nede! She, my trainee, had spent the night so we'd be ready. Ready to take "our little guy" to the hospital for his echocardiogram. For 10 days I had been elated that I had gotten a doctor to order an echocardiogram. I had high hopes that he'd then be put on some medications in which would slow his little heart and give him a bit more energy and strength.

We arrived just past 8 and were told the doctor would be there at 10 to do the test. Okay, annoying but I'll wait. In the meantime we chatted, He drew, we sang, I spoke to the "administrator" of the sonography section of the hospital, etc. The time passed.

Nearer to 11 the doctor arrived-- the pediatric doctor. She called me in to kindly inform me that they "don't do echocardiograms here", we'd need to be transferred to Beira where there is a specialist.  Nearly 4 hours away, depending on the enormity of the potholes, would we really have to do this? And, more importantly, what would it be worth? If we find he has cardiac condition needing surgery which is absolutely unavailable, it's not worth it. If we find he needs chronic medications? What if they're unavailable in this country?

What are my palliative care goals for this "little guy" of mine?

With much disappointment in knowing I'm not going to get the medical clarity that I had hoped for, I was in fact pleased that we weren't sent away. Instead, two doctors collaborated and opted for a repeat chest xray (to compare the enlargement of his heart to the one on record from last year). Fair enough-- we were sent off to xray this little chest. The poor, sweet thing had obviously been in this dark, cold room before as he was wiggling out of his shirt before the command was given. Much to my horror, in order to get this shot taken I had to elevate this nearly 40# kiddo by holding his hands extending straight above his head and lifting him up in the air with his back pressed against the back of the xray machine. With my arms trembling and wondering what sort of exposure this was having on my unprotected body, I prayed it would be over quickly before I dropped him and lost the chance for the 1 diagnostic available to us. Phew, we did it!

Much to our delight his lungs have cleared of tuberculosis and his heart has significantly decreased in size! Praise be to God.

Even though I still have unanswered questions regarding this child's health, we celebrate the small things here. But, as I think about it, maybe they aren't small at all. In the 1 year of knowing this child he's gone from SEVERE malnutrition, tuberculosis and weakness (where he couldn't even walk) to now gaining weight, clear of TB, his heart is miraculously diminished in size. I can't explain these things with or without medical diagnoses but perhaps the greatest palliative measure for my "little guy" is that he now knows he's known. We sat with him for nearly 7 hours because we care. And that my friends, may just be what is curing this one little heart!

it would be enough

If today was one of my first and last days of Palliative care visits in Mozambique, 

I think it would have been enough. 

I am satisfied.

But, longing and eager for more...

Blessed to be used in writing this story. 

More soon....

resting in the abnormal

This week was so weird. It started as a normal Monday-- shopping, laundry, prepare for the week/errand day. But this week I found myself trying to think of everything we might need knowing that we were not going to leave the house on Wednesday or Thursday. Cars were filled with fuel, cupboards were stocked.

Tuesday came around-- as normal as any day.

Wednesday I woke up later than usual since Nede wasn't going to school. My first thought was, "Wow, it's quiet. I can hear birds singing." I don't know what I expected-- I knew violence and war wasn't really likely but because I don't understand African politics I didn't know what this election day (that had been geared up for so long) might bring. Turns out I found it sort of fun. Knowing my family and I were just home together, not to go out for 2 days "just in case". I felt safe with my Loves near. We were okay and all WAS quiet.

But, also on Thursday, that knot sat heavy in my tummy. With someone dear going for an angiogram I found myself in a full blown worry-- a bit anxious and even scared. When all was well I realized that that felt like a big deal because, well, frankly, it was a big deal. Yes, it is so "normal" in America but so ABNORMAL in Mozambique. We wonder if the local hospital even has a stethoscope, yet alone an electronic device of any sort. It felt not normal.

What is this world that I find myself in?

Then Friday, I'm concerned again about 2 special people here. One who I know needs more antiretrovirals or he'll be out for the weekend allowing that blasted virus to mutate and make his medications ineffective. I went to check on him to make sure he'd gone. Not home. Not at the hospital either. Picking sugar cane to sell to have money to buy food. Also important, but not medication. Shoot.

Then, a special young mom that I met on the street had just spent the day at the hospital, hardly strong enough to walk, out of breath, sores on her swollen face. She had been sent away and treated with Tylenol and iron tablets. I could have screamed my face off knowing those are not what she needs. What can I do? Treat her myself and pray against this abnormal.

Despite all of this, yesterday and today I was in a giddy, silly-girl mood. I'm not sure my husband knew what to do with me. And this afternoon, while lighting a candle and rolling out my bread dough I found my mind writing and thinking, "This is normal and no matter where I am, as long as I'm with these Loves I can take a deep breath, light a candle, roll out some bread and enjoy something normal." I can find normal in this oh so abnormal life we journey. If I'm in the center of where I know He wants me, then all is well and even the most abnormal can be accepted as normal. I can be giddy and full of a joy from the Lord. Despite all of this, here is where I'm happy, resting in His place of abnormal.

(Aren't they sweet, too?)

world hospice and palliative care day

 Never before did this day, the day after my mom's birthday, hold much significance. But this year, as I research, dream and reignite my passion for hospice and palliative care I've discovered that today is "World Hospice and Palliative Care Day." The theme, put out by the Worldwide Palliative Care Alliance and supported by Help the Hospices (UK organizations), is "Achieving Universal Coverage of palliate care: Who cares? We do!"

And YES I DO!

In a time and world where the big news is a 29 year old, Brittany Maynard, deciding on assisted suicide and a Jesus-loving, Kara Tippetts, mother of 4 (also with cancer) begging her not to cut her life short, my heart bleeds for the both. I weep because Brittany could have beautiful access to supreme palliative and hospice care until her last breath. She could write a beautiful story with her husband and those she loves for as long as possible. And my heart, weeps at the beauty of Kara doing just that-- working with the best to be able to enjoy reading every last story to her kiddos, to go for that walk holding the hand of her beloved husband.

As my friend here says, "Everything is possible in America. American's can do anything."

And, isn't it true?

Here I am, on this day hoping with the World that we can expand palliative/hospice care into this little dark corner of the world. That I can take a nugget of what I know from the land of possibility and lengthen a day and bring some quality back to the hopefulness of an 8 year old.

Because life, in your living and your dying is sacred. It is beautiful, it is to be treasured-- all your days, every last breath. They are ordained and gifted from our loving Father and it's in our living we  get to learn to know him as we prepare for our dying.

I'm encouraged as I read a quote from Bono saying,

“In life, you try your best to hold on tight to your dignity, in death sometimes others have to hold onto it for you. The premise of hospice care is very close to the bone for me. The hospice was available to look after my father before he died of cancer.

These people are kind of angels. They escort you to the door of your death; they are the midwives for delivery into your next life. The comfort and relief they provide is exponential, it spills over to family, friends, colleagues. It’s a blessing that everyone should be able to receive.

In the poorest countries, where so many people are fighting for their lives, the conditions of death don’t get much of a look in. But how we care for the sick and dying is surely a litmus test of our humanity. Just as we fight for equality in life, we should fight for equality in death.”

Please pray because we do care and I agree, we should fight for equality in death. Not just in America.

it has begun

As this week comes to an end,
my throat still scratching
Me, second guessing my antibiotic choice
And reflecting on the week
Wondering if it's worth it??

Although, really, when I think about it,
Despite feeling not great for a couple of weeks,
It was one of the best weeks I've had in ages.
It was time.
The stirring was there,
We listened.
We made our first palliative care/hospice home visit.

I wish I could show you his eyes,
Because, there is so much there.
So much hope,
Yet so much pain when he says, "I'm too tired to play with the kids,"
So MUCH, when he admits he brushes his teeth with his finger and sand.
So much age when he says "my sores and head are always hurting."

Of course it was time.
It's time to love my "little guy" to bits.
Yes, I am smitten.
And, yes, part of me is really scared to walk this journey--
to risk it yet again.

I wish you could have seen after he visited the clinic later in the week.
After we gave him a foot scrub and cleaned up his feet,
Gave him a warm cup of milk and a lollipop,
He walked out giving me a thumbs up and a wave.
There was pride back in his little hurting heart.
I could see it,
He knew he had value.
He KNEW that day that he was important to someone.

There was no cure,
It may not even have looked like "palliative care"
I might be changing my program already.
My definitions are changing that's for sure.
"Comfort care" may be changing from morphine,
 to giggles.
And that's just fine with me.
Because we saw change, there was quality.
If only for a minute.

And when Chad asked, "So Dear, how was it to be back in the community again?"
"I LOVED IT!"
"I thought so."

everlasting joy!

This seems to tell the story....

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,

to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
     and provide for those who grieve in Zion—
to bestow on them a crown of beauty    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.

 Instead of your shame
    you will receive a double portion,
and instead of disgrace
    you will rejoice in your inheritance.
And so you will inherit a double portion in your land,
    and everlasting joy will be yours.

“For I, the Lord, love justice;
    I hate robbery and wrongdoing.
In my faithfulness I will reward my people
    and make an everlasting covenant with them.
 Their descendants will be known among the nations
    and their offspring among the peoples.
All who see them will acknowledge    that they are a people the Lord has blessed.”

 I delight greatly in the Lord;
    my soul rejoices in my God.
For he has clothed me with garments of salvation
    and arrayed me in a robe of his righteousness,
as a bridegroom adorns his head like a priest,
    and as a bride adorns herself with her jewels.
 For as the soil makes the sprout come up
    and a garden causes seeds to grow,
so the Sovereign Lord will make righteousness
    and praise spring up before all nations.

Isaiah 61:1-3, 7-11

Happiest 9th Birthday to our Nede! 

May "everlasting joy" continue to be yours! 

You are beauty from ashes!

You are a delight to the Lord--

and everyone who knows you!

death where is your sting

We've been asking the hard questions here lately. The ones where there are no answers. The ones that by finding 2 Thessalonians 2:7, I found comfort, "The Mysterious Wickedness is already at work, but what is going to happen will not happen until the one who holds it back is taken out of the way." 
Because, really we know that there's no answers other than God is weeping with us.
I want to ask "Why didn't God stop?" my friends nephew from being abducted and mutilated with body parts being used to make some evil person "rich". I want to say, "Why didn't God stop the bus from hitting her?" 
As I grow, I realize those aren't the questions to ask. Because, what I know of God is that He is ALWAYS good. No, these situations are NOT good AT ALL! They're absolutely awful. 
I've wrestled with sharing these tragedies with you-- I'd rather protect you from hearing the grimmest of grim that we see here. But, reality is, my friends, it's happening. And why? I do wonder. And, being in the positions we're in we're asked, "why doesn't God stop these tragic things?" 
I don't have the answer. The only thing I can promise is that God is always about good. The families of these children probably don't see this, I don't see this. No, not yet. 
This brought me to wonder if my view is too small-- too much of the here and now. Maybe I sit and analyze and only see our earthly life. Fact is, it's all I can comprehend at the moment so of course a premature death has nothing good linked to it. I do know though (in theory) that these tragedies that are pure evil are not God's good plan. Thankfully we can be assured that the story doesn't stop there. Jesus conquered life and death. Not just life. So, maybe the real thing I should be contemplating is what it will be like to see the fullness of God's goodness on the other side. Because, asking just the why's of now forgets about the promises of then.

“Death is swallowed up in victory.”

O death, where is your victory?

O death, where is your sting?”

 The sting of death is sin, and the power of sin is the law.  But thanks be to God, who gives us the victory through our Lord Jesus Christ. Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain. 1 Corinthians 5:55

There is victory. In the meantime, there is grieving, yes, much, much grieving. And, the Mysterious Wickedness is surely at work. But, there will be a time when it's moved out of the way and the fullness of His goodness will be revealed. And then, and only then, will I understand. May I fix my eyes on the larger plan. The bigger view. The whole story!

Mvura Ye Upenhu Palliative Care and Hospice

And we're rolling....

How does one start a pilot palliative/hospice care program in Mozambique? That's the question I've toyed with for a good nine months now.

First priority...Mozambicans. I need a Mozambican to learn from and to train up. My impact in a community as a “pink person” (as Nede refers to us) is minimal compared to a respectable Mozambican. So...

This starts the 4^th week of my training Rebecca in palliative care/hospice. I have chosen Rebecca as my first “trainer”. For many reasons, she is the obvious first person for me to train. I have known her for greater than 6 years, she's been a friend but has also demonstrated compassion and care to the sick in the villages (out of her own initiative). She speaks English well. She's well grounded in her Christian walk-- these are great first steps. Rebecca has made many choices to reject her cultural “norms” and stand in a “Kingdom culture.” These were requirements for me in anyone I would work with on this program. So, with my first “trainer” selected, we've kicked off...

We have now completed 5 weeks of 2 days of training each week. First, we started talking about what palliative care and hospice care are. It's interesting as I start to recognize the philosophy that I so believe in just from being raised in America. The understanding of alleviation of pain and suffering are not the natural thought process here in Moz. The mountain is big!

Into the 2-3 weeks we spoke about grief and bereavement because, tragically, there was a traumatic car accident recently so these talks were not just theory-- it was needed practically. This week we started on HIV/AIDS.

Already I've been faced with many cultural questions and challenges. Imagine being told by the pastor, at the death of a loved one, “don't cry” you will see your loved one one day? Don't show your sadness!

Imagine believing that every death needs to be blamed on someone. There's no acceptance of accidents. There's no understanding of disease pathology-- there must have been a curse.

Imagine that I just spent the equivalent to almost $40 on a box of latex gloves! Oops, I need to do some shopping around for that! That will not be feasible (but necessary)!

To be honest, I'm not sure how to work with this. But what I do know is that I'm excited to try. I'm eager to keep teaching, I'm eager to start working with families. And, yes, we could dive in and start visiting but the crises was here yesterday, it'll be here tomorrow and, I'll feel so much better to start and do it well when we're ready. It's my goal that by October we'll have admitted and started visiting our first family with...Mvura Ye Upenhu Palliative Care and Hospice (Living Waters Palliative Care and Hospice) Because...Whoever believes in me, as Scripture has said, rivers of living water will flow from within them. John 7:38 Yes, that is our prayer....

 Please pray for us!

We've also started recording for our Wildlife Animal players that our patients will receive. These girls have started recording music with Chad. Soon stories and scriptures will join them to bring peace and hope to our patients at the end of life. This is exciting...

(No, the video is not frozen, it's just one photo. I didn't know how else to share the song! ;)

(Wildlife Animal players which will play the music we're recording, along with scriptures and Bible stories)