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)

my dream for courage

Sometimes you just have to dive in, don't you? Be like Peter and "get out of the boat"! All the while, there may be fear and trembling but, with eyes fixed on Jesus, take a step. Baby as they may be, just walk, keep on walking.

I've been here in Mozambique the better part of 5 years now. All the while I've been busy doing what God had in front of me but never was I secure enough, never was I well enough, to dream another dream. But now, as life settles, I enjoy my family and our life here, I've started to dream again. And so, after months of writing, planning programs and trainings, I'm to the point of being ready to "get out of the boat and walk..."

You may have read about Courage which later lead to my sharing about my desire to start a program in hospice care. And then, not long after I had an experience which reminded me, if God has asked something of me, I need to walk in it, I need to listen, I want to be Obedient.

So, for the rest of this year, I will slowly be rolling out my plans for a palliative care/hospice program in Mozambique. (I have a more detailed plan if anyone is interested to know more please email me at darajeanhillstrom@gmail.com). The basis of the program is to teach families and communities to care for, in their homes, those with incurable disease. I foresee this being many HIV/AIDS patients, those with things such as cancer (that which there is no treatment for here) and even children with special  needs who have little to no access to support structures.  I will hire and work alongside 1-2 Mozambicans (for starters) who will be titled "trainers" who, after much training themselves, will be able to train families and caregivers in how to care for and what to expect in caring for their terminally-ill loved ones.

Historically in Mozambique, there is no understanding of "comfort care" or that "suffering" isn't necessary. Many people may even believe pain and "symptoms out of control" (ie. nausea, vomiting, diarrhea, seizures, hallucinations) are a result of a curse or a sin that they've committed. In preparation for planning this program I've conducted some interviews to gain a better cultural understanding. I've been shocked to hear from my friends that the only acceptable reason for death would be due to old age. Any other prior death would be a work of witch craft or a curse. Disease process is not understood. Accidents aren't called for what they are, an "accident", all is a matter of sorcery.

What a scary way to live. Terrible.

Okay, okay, so you maybe thinking, it's unlikely that I'm going to be able to change a nation and culture's world view on death and dying. I will be the first to agree with you! There are mountains in front of this messenger who's trying to bring good news of eternal life to those who are suffering. But, my hope is that within the next many months my team and I can walk with a few families, primarily the Courages and  my little guy with tuberculosis to bring them some relief and care but most importantly love and hope!

To kick this off, I will need a little bit of extra support to do things such as have training programs translated into Portuguese, have salary money to pay my "trainers", transport money to bring our patients to the hospital when necessary (not to die there but to be treated and returned home), and money to buy some supplies. I would like to give you the opportunity to purchase a Comfort Care pack that will help provide some additional TLC to one of our dear patients. For a donation of $50 (suggested) you can provide this bag for a patient. Inside they will be provided with a tooth brush, tooth paste, mouth wash, aqueous cream, lip balm, a new capalona (cloth used for everything here--a sheet, towel, skirt, headscarf, everything. Literally!) and best of all a  Wildlife Storyteller!!

With the help of my great husband and his ministry (Audio Scripture Ministries) we're working on having a culturally appropriate recording that will be in these animals (on the blue player here- a solar powered device that plays up to 15 hours of stories, music, scriptures!) and the best thing is that we working to have it in the local dialect. There is NOTHING available in this dialect for people to listen to, nor is there even a written Bible or New Testament of the language of the people right here where we're living and working! Our goals is to record stories of hope, stories of love, Bible stories, Psalms, music and songs-- things that people, children and adults, can listen to and hear when they're ill, even until they take their last breath. This will reach much further than just to the palliative or hospice patient, the African family is large and many people will hear the word of God through through these adorable tools. 

Please know that we're starting this program off very small but will incur some additional expenses. Every patient that we care for will receive one of these packs but some of the funds raised will have to go towards the translating and recordings for these devices, salaries, supplies, transport, medications, etc. 

If this is something you'd like to partner with us in please fell free to send a gift via the "DONATE" Paypal button to the left of this link, click here Dara's support and follow the directions. Any additional support above the personal support I receive, by either of these 2 means, will be set aside for the palliative care/hospice program.

Thank you for your care, love, support, encouragement and believing in this need! I am excited to be dreaming again! 

A special thanks to Nede and Simba for their assistance in this photo shoot. 

the one in the tiger suit

Several weeks ago, while at a rural village church doing a Bible distribution, we were getting in the car when Nede said with that, oh, so enthusiastic Nede way, "Mom! You see that girl in the tiger suit? She's my best friend ever!"

Well, this Sunday we were back to the same church and, once again, Nede came running to me, "Mom, I found my tiger friend again!"

Let's hope she never wears a different dress because Nede will never recognize her "best friend ever" without her tiger suit on!

that's all i want.

Do you know what I want?
    I want justice—oceans of it.
I want fairness—rivers of it.
    That’s what I want. That’s all I want. Amos 5:24

shoot. another lesson in obedience.

I felt nervous to go to clinic today. Because, I had to back track some steps. My steps of disobedience.

Four weeks ago my Little Guy "I'd like some rice and fish now" came to the clinic. He wasn't well. I happened to have brought some new clothes for him that day, clothes Nede picked out for him because he has worn the same red sweat pants every visit to the clinic. Likely his best. On this cool day I added his new long sleeve shirt to what he was already wearing but he kept on shivering. He said he felt fine. His Vovo (grandmother) also confirmed that he was fine. But, it wasn't THAT cold. Why was he still shivering? I guessed that if I took a cold water bath on this morning I'd be shivering for the next 3 months as well but, he's a bit hardier than I am, he shouldn't be cold from a bath.

I took his temperature. Normal.
I listened to his lungs. Fine.
No other obvious acute illness.
Other than the fact that he has abdominal tuberculosis and HIV I can't find anything else wrong.
I guessed that those 2 huge diseases within themselves could be causing the tremors and, if that was my assessment, there was nothing else I could do.

I didn't feel right in myself as I prepared to send him home. I thought, "this isn't looking good, what if this is the start to another end?" As a staff we talked about taking him home so that we could know where their house was for future needs. But, for whatever reason, I decided that we'd do it next time. I can't recall if I had a good reason to not go that day or not. Would I be late to pick up Nede? Was I just tired of the challenge? Bottom-line. I didn't go.

For 4 weeks I waited. Hoping. Praying I didn't miss it again. My Little Guy who we already saw go from glory to glory Eating rice and fish was teaching me a lesson. My worry wasn't necessarily that he'd declined and died (which I obviously hoped wasn't the case) but my greater concern was I had had the stirring to do more and I hadn't. I was disobedient. I know I myself can't take away his TB and HIV but I have (tried) to commit myself to walk with those I'm asked to. Had I missed it with him?

This morning, a frigid one, apparently no one wanted to be out (yes, 44 degrees is cold with no indoor heating), there was no one waiting to be seen at the clinic-- the perfect time to go look for my Little Guy. I was afraid. What if he had died? What if he was suffering in the hospital. We set out-- filled my car with fuel so we'd be sure to have enough in case we were gone for a while searching. As it turned out, this time "very close" actually was very close. I parked my car under the mango tree as this stranger who said she knew my Little Guy led us to the house. I could have screamed and done a little dance as we walked down the hill, I saw Little Guy playing with some other kids. He immediately came over to greet my friend and me. He was okay! His Vovo had been sick and today she was in Chimoio selling bananas.

Oh, the relief that came over me as he sat on my lap. Of course he's not well but he's the better. He wasn't shivering on this cold morning. And, I pray he now knows I care. And, when the Lord asks me to "go" next time, I hope I'm able to respond.

But, for today, I enjoyed another visit with my Little Guy and we'll see what more we can do for him. I thank God for the grace of today and for having mercy on me while I keep on learning.

Another lesson in obedience....

family. freedom. faith.

Family.

Friends.

Flowers.

Food.

Faith.

And. 

Freedom.

Celebrating them all.

Happy 4th of July!

And, missing things of "home".