Friday, November 27, 2009

Parts

As this week comes to an end, I can't help but let my mind race over everything I have to do before the ship sails away from Benin. While the hospital on board is closing its doors, I am gearing up for a big transition for the patients we care for outside of the steel doors. I have three children who are only just past the halfway point in their treatment for Burkitt's.

I have patients who have no means of buying medication or supplies for their wounds, and may live past the 3 months supply we leave behind. When we sail, Africa will still be here, these people stay right in their same situations.

But that's not entirely true. People here have been changed forever. Whether it was by a surgery that corrected a deformity, a farmer who learned how to grow crops, or a pastor who now knows how to council the mentally ill, people have changed. Parts of this country have been altered, for the better, forever. The biggest mistake one could make who is here in Africa would be to think they deserved any of the credit for whats been accomplished this year.

I too have been changed forever, I will never again look at the world the way I did just 9 short months ago. Parts of me wish I didn't have to learn so many lessons the hard way. Parts of me wish I could have stayed in the comfort of home, doing Dunkin Donuts coffee runs on the weekends while working in one of the top hospitals in America with state of the art care for all of the sweet children who come through its doors. Parts of me wish I didn't have to suffer so much heart ache and grow so attached to kids who I then watched die. Parts of me wishes I was done right now, packed up and ready to sail.

But those are just small parts, the whole of me, my heart, is more invested, more in love, than it has ever been. I wouldn't change one thing about this year, not one thing about my life. My latest lesson was learned though those tears over Luc. This story, in its entirety, is in God's control, it always has been.
Yesterday, I was reading through my favorite blog. A while back she posted something from the lay apostle, Anne. Without fully researching her(Anne's) crediblity (actually, I got dizzy looking through all of the different opinions about her), this particular part struck me.

"First, there will always be a difference between the world’s path and heaven’s path. These two paths, while they can run along side each other for increments, will always separate. Ultimately, each man will have to choose. Every man, to a greater or lesser degree, will have to contend with choosing first good over evil and then he will have to make another choice and that is the choice of choosing My plan for his life over his own plan for his life. After that, the choices become even more studied in that the man must choose My plan in each day, in each task and even in each moment. You may say, dear apostle, that this is a difficult call for a man, to study his actions in each day. You may say, this is asking a lot. You are right. I, Jesus, am asking a lot of you. I ask for your full commitment and I do so without apology. Dearest apostles, if you give me your full commitment, there is no limit to what I can do. Look at your life. You have said yes to me on many days. Examine what I have done with your yes answers."

The parts of me that want to be home are outweighed by what I believe to be the call on my life, why I am here. All of me is in a postion of thanksgiving. I have fullness of life, I have gained so much by giving up everything.

"Truly, your hearts, open and filled with My love, call out to others. You provide for Me a welcome to those who feel separated. If they can be taken into your heart for even a brief moment and experience Me, with My love, then they will have the courage to both approach Me directly and to accept Me directly. Please, do not count the sacrifices when you consider your service. Do not count the loss of worldly respect. Count only the souls who are comforted and consoled. Count the repentance and healing of so many who have been restored to unity with heaven. Count the humility that I have bestowed on you, dear apostle, since you began to learn about true holiness. I am your King. I can give you anything. I choose to give you peace and holiness. I choose to make of you a resolute servant. Accept My will in your life and you will then be able to accept all of the graces heaven has stored up for you."

Africa is much more than just a part of my life. Its where I have found my place in God's plan. Its where my heart was broken for 'the least of these', where I died everyday to my own will and desires, and put my trust to the real test. Its where I will continue to learn hard lessons and love with every ounce of energy I have. It is where I will put all of my effort, laced with tears and moments of pure joy, into these last days before the ship sails.

Every part of me is ready.


Wednesday, November 25, 2009

So much

Since last posting my emotions have been labile at best. You could catch me at any time throughout the day and I'll be on the verge of tears. When I became a pediatric nurse I didn't sign up for my patients dying, that wasn't part of the package. I said I would never do oncology, kids with cancer were just too sad.
When I became a Christian, I changed. I wanted to do anything for Christ, I prayed for His heart. I wanted to love like Him.

Luc's parents called on Monday to say he had increased swelling in his right eye, the same eye that once was bulging out from a large tumor. We watched the tumor disappear, he was one of the ones that would make it in my determined heart. I went immediately to Dr. Gary. He said what I didn't want him to, that the treatment works only 70% of the time, that kids who initially respond then can have the cancer fight back.
Maurice's mom called too. He was sick and his cancer was getting worse too. She was bringing him up-country where she could care for him and we promised to call her.
Rachelle has malaria and no money for treatment. We told her to borrow, to do anything she could to go get treatment. She can't get her next dose of chemo without being treated first.

After all of it, I went to my room and sobbed. I cried for Enock and Aime, I cried for little Maddie. I gasped for air thinking about Luc, Maurice, and Rachelle.
Please Jesus. Help me. Help Luc, save Maurice, be with Rachelle. I love them so much. This hurts too much.

My sweet Suzanne. Their story has been written since the beginning of time. I wrote you into it for a reason. When they come home, they will be in Heaven, with Me. I cry for them too. I love them even more than you. I have shown you what real love is, what it is to truly love my children.

Of course my heart feels as though it will burst. Of course I still, even now, sit with tears threatening to roll down my cheeks in the middle of the staff office where I type (great place to blog, Suzanne). I prayed yesterday and sent out an email to my mom asking her to do the same. We had an appointment yesterday with a pediatrician to talk about Luc. There is one more drug we can try but it isn't available fom the ship or even in this country for that matter.
When I shook the doctors hand, I knew he was our answer to prayer. While talking, he was using his hands and after only a few minutes, Luc, who was sitting on my lap, started mimicking the doctors hand gestures. During Luc's exam, the doctor tickled him and interacted in a way that made my heart relax. When we got up to leave, Luc ran over and held the doctors hand. He trusted this man, and through his eyes, I trusted him too. I knew that after we left, God would put the right people in line to do what was right. Instead of blind trust, I got to have a glimpse of who God had in mind.

I walked out of the hot building, hand in hand with Luc. When we came to the edge of the curb and counted,
un, deux, trois.
Then we jumped. We continued this over the cracks in the sidewalk, over some tiles set in the ground (you get the picture) all the way to the car. Again, deep in my soul, I heard a whisper.

Suzanne, be like Luc. Live for this moment. Smile, laugh, be joyful. I have so much for you, just open your eyes. Enjoy this time with Luc, don't look into the future. Have trust, experience my presence, right now. I am here.

God, you have given me so much, so much that I don't deserve. Thank you for loving me, for showing me how to love, and being there to pick up the pieces when my heart feels destroyed by the pain that comes with loving like you. I will set my eyes on you, I will wait on you. I will choose joy over heartache.

Mark 10: 13-16
"People were bringing little children to Jesus to have him touch them, but the disciples rebuked them. When Jesus saw this, he was indignant. He said to them, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." And he took the children in his arms, put his hands on them and blessed them."

Thursday, November 19, 2009

Going home

We have been visiting Enock since the beginning of this outreach. A shy boy with a sweet smile, we always looked forward to drawings and small folded notes from him when we would go visit. He is the little boy I told the story of how he made me a get well card one day when I wasn't able to visit, one of the many actions a child has done that will stay with me the rest of my life.
A few months ago his mom made the decision to fight against his cancer. She knew the oncologist here isn't trustworthy, that he may not do right by Enock, but what was her alternative?

His tumor responded, he regained some of his childhood. He returned to school and he joked with his brothers and sister. He acted tough with his friends and cuddled with his mama.
He was a 7 year old again.

In only 1 month, his tumor came back. This time it was even more angry, more aggressive, and stole back Enock's care-free childhood.
Last week we went to his house where he could hardly hold his head up. His mama leaned in and held her cheek against his closed eye. She kissed the bridge of his nose with her thick lips, an action so tender my heart fell. She was watching her youngest boy, her baby, die.
On Monday we learned Enock had been brought down to a clinic in the city where his aunt worked. We found him in a cool cement room with a soft breeze and clean sheets. He rested on a pillow and his mama smiled as she watched him sleep. He woke up from time to time and asked for 'coca', he smiled a bit when I told him he was a man after my own heart by drinking coca cola. At one point he asked for me so I moved from the top of the bed where I had been holding his hands to the bed with him. I held him up as he sipped his coke, I laid my arm on his chest while he weakly held onto me. I kissed his hands when he would open his eyes, searching for familiarity in that second of confusion. We stayed and talked about Enock, about what a special boy he was. His mom told us a story from the morning when she had gone about changing his bed. Enock, who was too weak to lift his head, was found by his mama on his knees in front of his bed praying when she came back into the room. He had found the strength to kneel before Jesus. I asked him if he wanted us to sing to him and he nodded 'yes'.
mon Dieu est bon
my God is good
I can't stop crying while writing this. I can't.

Yesterday we went to see him again and his mama wanted us to bring him home with her. They weren't sleeping well there and Enock missed his brothers and sister. We loaded into the car, Enock laid across the back resting on myself and his mom. I carried him into his house, whispering "look, you're home. We brought you home", and gently placed him on the couch. He smiled at his sister and then drifted back to sleep. We prayed for him and I kissed his face.
Edabo, Enock.
goodbye

We got the call this morning that Enock had died. I held Luc who happened to be next to me when someone told us the news. I hugged him tight fighting these same tears that take my breath away now.
This afternoon, Mariette (Aime's mom) came by the ship. I had picked up some fabric a week ago as a gift for her as she just recently, since Aime has died, graduated from pharmacy school. She walked down the dock sporting the dress she had made with the fabric and she proudly showed me her diploma. Right before she left she pulled out some pictures, one of her and I lay among them. My eye caught another one, one of Aime before he showed any signs of the lymphoma that claimed his life.
There was no way to control the tears falling. It was too much today, I couldn't help it. She smiled in understanding, and we hugged as we have a million times.

And now, now my heart aches so deeply, it hurts so much. I think of Enock, about his mama who must be so devastated to lose the son she loved so much.
Just now I googled 'edabo' to find out if I was spelling it right. Fon is a funny language, almost none of the people who speak it can read or write it. The results showed some friends blogs from the ship, one of them being my friend Richard. I read through one of his posts, about another patient who died, and found comfort in the verses he included.
Psalm 116:3-7

3 The sorrows of death surrounded me, and the pains of Sheol came upon me; I found trouble and sorrow.
4 Then I called upon the name of Yahweh; O Yahweh, I beg You, deliver my being.
5 Full of unmerited favour is Yahweh, and He is righteous; yes, our God is full of mercy.
6 Yahweh preserves the simple: I was brought low and He helped me.
7 Return to your rest, O my being, for Yahweh has treated you well.


I am not afraid of brokenness,
wash Your feet with humble tears
I will be poured out till nothings left
I just want to wait on you, my God
Lord, I just want to dwell in who you are
-Kari Jobe

Saturday, November 14, 2009

Chicken little

She was admitted to a corner bed in D ward this summer. A tiny 5 month old, hardly the size of a newborn. Her mama's eyes were hard set, her smile hidden beneath months of having a baby she never bonded with, a baby with a deformity that often makes these precious little ones the subject of cruelty, outcasts of society.

She watched as baby Hubert, another little one, put on weight. She saw the nurses coo and celebrate everyday he showed a gain. In her corner of D ward her eyes became more distant, her baby starved in so many ways.
With virtually no gain, we had nothing else to give. We had to have the bed for another patient, we didn't have a pediatrician, the list went on. We had prayer, but we had always had prayer. Countless people prayed, but nothing changed for this little baby. I volunteered to follow her outpatient. Palliative care wasn't full, we had time, and I was switching back that same day. Her surgery was canceled, and a new card was filled out for November, wishful thinking at that point for many.

For so long nothing changed for this little babe. Anicette continued to stay the same, but we did see a change in her mama. It had started in D ward. She began dressing Ani in cute clothes. She smiled when she had to get up in the middle of the night, joking with us in whispers while the bottles warmed.



In the hospitality center, the visitors continued to pour in. Daily, Ani and her mama were getting loved on, prayed for, sung with. A girl in HR was a known pediatric dietitian in the 'real world', she was on the case, and was able to somehow get new formula sent from the States, faster than anything has ever been shipped.
Each week I found the coordinator of our feeding program. At first the reports were a gain in ounces, a few hundred grams maybe. Then she would lose those grams the following week. We feared the worst but desperately held onto a faith we prayed would change the story that was unfolding. She began to gain, each week I saw the mom we would communicate in sign language. It was a simple thumbs up or down, and every week we hugged after a big thumbs up.

I was October, and after months of praying for Anicette, loving her as we know Jesus loves her, I cried when I heard the news she was heavy enough for surgery.
He did it. God did it.
Through all of the heartache, all of the pain I have felt these past weeks, my joy has been consistent. It rests in this story of a little baby. It rests with my God who heard the prayers of so many, who loves Anicette more than any of us could imagine. Before her surgery I snuck some pictures of her as she slept in my arms.



I watched her surgery, even managed to hold it together enough not to cry in the actual operating room (don't want all those men thinking I'm some over-emotional nurse or something).


When I went into the recovery room a while later, checking to see if she was awake, I finally let myself give into the tears when I discovered Anicette awake and eating. Her mama looked at me, and in the English she has picked up over the last months, with tears in her own eyes, she said "Thank you God"
The next day, my friend Meg wandered down to the ward with apparent super-hero timing. She caught this picture which I promptly printed and put in a place I see every day. It makes my heart smile. Seriously, its medically possible. My heart smiles.


When I first met Anicette back on D ward, I had the pleasure of being her nurse. In those first weeks I lovingly nicknamed her chicken little. She had tiny little chicken legs, and rather than just call her chicken as I had originally started, chicken little seemed to fit just right.

Last week I brought Ani and her mom for a second round of vaccinations at a local hospital. After her jabs, Ani cried her way into the car. She ceased only when we sang, which we all did the entire drive home, my translator and her mama laughing at my newly learned French the whole way.
Jesus, you are good
Jesus, you heal

Jesus, you are God
(below, a picture of Mama singing in the car)

Her strips are off, her lip is healing, and she has a ticket to come back for her second surgery next year when we return to Togo, Benin's next door neighbor. I'll be there, and hopefully I will be her nurse so I can share in late night whispers with her mama and early morning cuddles with chicken little.



Jeremiah 29:11
"For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, plans to give you a hope and a future."

Wednesday, November 11, 2009

Maurice, Moustafa, and the Ministry of health

Last week, after I wrote the final story on Maurice, I got several urgent phone calls from his mother a few days later. She wanted to speak with me face to face, and I agreed given she doesn't have the reputation of being an alarmist, and I knew she was serious.
As we sat in their hot cement house, all of us in the one room, sweating and draped in children, Maurice's mom told me about a dream she had. As she slept, she saw Maurice getting an infusion, she knew somehow it was the same kind we had tried before. She saw an angel come and touch Maurice on the eye, healing him of his disease.
Can we try it again?

Yes, of course
.
God please let me have faith that allows me to believe this could happen. I want to believe. Give me the strength to believe.

With only a handful of medication left on the ship I had done some research into getting more at the Ministry of Health here. They said it would be easy, "no problem" which in all honesty is not terribly comforting. At all.
We dropped Maurice off at the local hospital with Rachelle and Luc on Monday and made our way over to see about the medications. We went to the first room where you 'order' what you want. We then followed a lady out to a warehouse where boxes upon boxes of medication are piled as high as the ceiling. The most popular are towards the front.
Mebendazole for worms, Quinine for malaria, Vitamin B6 injections for, well, they give it for any and every ailment. As always, another story for another day.
At this point, my partner and translator split to go retrieve a signature on some official documents we have signed weekly by the minister of health, Moustafa. I don't know why, but I love that his name is Moustafa. Moustafa, Moustafa, Moustafa. Its fun to say, isn't it?
Anyways, I figured I could handle the payment and receipt portion of our transaction with the (extremely) limited Frech I know. The original lady I followed decided to bring me to yet another room, this one with the glorious sound of an air conditioning unit buzzing outside. As I walked past an armored car I remember thinking about how sketchy banks and business transactions can be in these countries. This led me to not be the least bit surprised when I walked through the doors to find two humungous men yeilding giant guns (I won't embarass myself in trying to say what kind of guns they were) and sporting bullet proof vests.
Sa Va? I said like an idiot.
Oiu, sa va.
Whew. haha.
Once Moustafa (the minister of health) found me and returned my team to the room with the air conditioning and guns, we sat and waited. And waited.
A phone in the lobby rang at one point, apparently we missed the memo to answer it, and was prompted to do so by another customer. 'They' (still don't know who 'they' are exactly) told us our total cost for the medication, but nothing else.
Moustafa returned and clearly was not impressed by our waiting game. He marched into the back room and shortly thereafter we were asked to pay up and follow him back to the warehouse.
Within minutes I was handed 10 vials of cyclophosphamide, a toxic chemotherapy drug. In total, I paid 13,o50 CFA, roughly 26 bucks.
In the end, after a few hours, we had enough treatment for Maurice, and all it took was my signature.

I saw Maurice today along with the other kids. He is sick, yet still cuddles, and his mom is hopeful. She knows medicine doesn't believe we will be successful in this treatment, but she is praying that science is wrong. I am too.
Will you join in praying again for little Maurice? His mother says that he will be a testimony to Gods miraculous nature, and everything in me wants that to be true. I also want to pray in line with Gods will for him. For now, I go with my gut instinct to give his mother credit and try a few rounds.
For now, I will continue to love on Maurice and tell him about Jesus. That part is easy.

Tuesday, November 3, 2009

A wave goodbye

No, I'm not going to tie this title into some witty nautical metaphor. Its one of those titles I'm finding a bit cheesy, but alas, I'm tired tonight.

You all met Maurice quite some time ago. He was my first pediatric patient in palliative care, which made him a shoe-in for my favorite kid in Benin. He was sick and so sad those first days. His mama's eyes were always cast towards the ground, but occasionally she would speak in her broken English and smile shyly.
We treated Maurice for the type of cancer that he appeared to have. Several biopsies sent overseas kept coming back suspicious, but we kept sending them because we wanted an answer. If you read about Mercy Ships much, you would know about Dr. Gary Parker. He's been here over 20 years and I have had the honor of watching him work. He took on Maurice each time, praying for him before the first cut, and following up, making sure we were doing what was best for the little 5 year old. We finally got our answer of Sarcoma. I went into the office one night several weeks ago and attached to Maurice's file I saw research Dr. Gary had done on his particular cancer. I got an email soon after explaining that he had spoken with another doctor, and if we pursued chemotherapy, they could help with a protocol.

All of this time, Maurice has been staying with his aunt while his parents care for the rest of his family up north in the country. We showed up weekly to find a dirty, mostly naked Maurice and often left to sounds of him crying. Everything in me wanted him with his family, with his mama who takes such good care of him. I knew it was right for him to go home. They of course wanted him close to the ship, and then we had to have a honest discussion about just how likely successful treatment would be.

Last week I went to see Maurice at his house. He is recovering from the latest infection to his eye, and I wanted to change the bandage. He was smiling and happy, very willing to hold the saline for me as I attempted to make (and keep) a sterile field for his dressing change.
Monday he came to the ship, this time with his mama. She no longer looks at the ground, but kisses my cheeks and hugs me tight. Maurice was the happiest I have seen him, and I knew right then,it was time for him to go home.

His mama reports there is a 'big' hospital up north where, if, we wanted to give 'injections', they could. I can't describe hospitals here, but a thousand factors are against any timely, accurate, non-corrupt care being given to Maurice. I couldn't make the decision on my own. I couldn't. I emailed Dr. Gary.
"Is it worth trying? I want whats best for him."
As I typed, Maurice sat on my lap. I walked into the hallway, not sure of what to do, what to say. I couldn't honestly say I thought it was worth putting him through more unnecessary treatment. As I crouched down to talk, feeling unsure, Maurice came over and curled into me. I pointed to my cheek, ad he responded with a kiss. He doesn't know it, but that was my comfort. God reassured me in that very moment that I was to let go of Maurice, it was time.
I asked;
"Maurice, can you tell me something about Jesus?"
He replied
"He heals"
I asked, Tell me one person Jesus loves"
and he replied,
"me"

I walked them to the dock and grabbed one last hug and kiss from both mother and son. As he shuffled away, still with his big yellow flip flops, 2 sizes too big, I called out, 'bye Maurice', and my favorite kid in Africa lifted his hand, without turning, and waved goodbye.

Sunday, November 1, 2009

Pain in the offering

I was considering writing a post a few days ago, an update of sorts. Immediately following Maddie's death I described my status to a friend as 'crying at random'. The type of burden the whole situation left me with was too strong to carry on my own. When I woke up in them middle of the night, over and over those first few nights, I just laid there, quietly reflecting, privately grieving the death of a two year old little girl that I loved so much. It was me and God during those moments, silently communicating, me starting to gain glimpses of understanding.
Each morning I asked Him to fill me, and I listened to Psalm 118.
'This is the day that the Lord has made, I will rejoice and be glad in it.'

On Tuesday I faced the day, unsure I would be able to hold it together. My heart was so heavy. Our last stop of the day was the hospitality center, a building which houses patients who require follow up care or simply somewhere to sleep while they come back and forth from the ship. I was checking on a little baby we said we could help bring to the hospital. Of course I seized the opportunity to hold baby Anicette while I was there. When I first met her I nicknamed her chicken little. She was so tiny, always throwing up formula all over us, and giving her distant mama a run for her money.
But that was then.
Now, when I ask if Anicette has "puked", her smiling mama replies; "no puke". (Yes, I taught an African mama the word puke. I also taught her the song 'Tomorrow' from Annie)
While extending her English vocabulary to include "fat belly and fat bum are good", a band of chocolate colored boys ran to me excitedly. They held a treasure in their hands, a plastic replica of Alex the Lion from the movie Madagascar. Although it probably came from a happy meal in some far off land months ago, the battery which allows Alex to speak still had some life in it. All you had to do was hit him gently and he would say one of three phrases.
I'm Alex, the only Alex
You got it!
Lets go Wild!
As a result of the battery dying you also had to have your ear right next to the toy in order to hear these wildly funny (if you're a little kid in Africa) remarks. The boys took these factors into account and deducted that if you hit the toy against your ear, you can hear what Alex is saying.
And of course, they thought it was imperative that I join in the fun.
I leaned over, still holding Anicette (now that she is big enough she will go for surgery Nov. 2nd), and started mimicking what Alex was saying every time his plastic mane was whacked against my ear. The boys roared with laughter and joined in shouting the phrases as loud as they could . It only hurt when the toy didn't respond to the gentle hitting, causing my assailant to make the subsequent blows to my ear just a little harder.

Joy started creeping in. With my right arm cradling Anicette on my hip, I found my left hand holding her fat belly as I leaned forward. I glanced at her and my eyes were instantly set on her wide smile, her tiny pink tongue visible through the large gap in her lip.
God was there. He was right there at that very moment.
Actually, He knew that moment was in store for me well before I knew I would even need it.
On my way out, Anicette's mama started singing a song very familiar to me. I sang it as a child, and they sing it here often, in English, then also in French. She was singing in English, and I knew, in that instant, God was smiling at us.
"This is the day
this is the day
That the Lord has made
that the Lord has made
We will rejoice
we will rejoice
And be glad in it
and be glad in it."

On Thursday morning I didn't have much to offer God. I didn't have words, couldn't put down thoughts on paper, so I decided to listen to worship and just sit. The sun was warm and I marveled at how it comes up every day. There isn't a day when it doesn't rise.

'Blessed be your name
When the suns shining down on me
When the world's all as it should be
Blessed be your name
Blessed be your name
On the road marked with suffering
Though there's pain in the offering
Blessed be your name.'
-Matt Redman

God is faithful, there are a million ways to come to that same conclusion. Yes it hurts, yes its hard, but this is life. Life is about changing, about loving with abandon. That life, that kind of love, it comes with a cost, its painful at times. But the alternative, well, no thank you.

'You give and take away
My heart will choose to say
Lord, blessed be your name.'

Oh, and here are some pictures of Maddie to go with her story. The first two are my favorite (Her mom is so excited because for the first and only time, we got Maddie to smile at us)



















As I mentioned though, Maddie was not always a fan of this yovo, which of course made me love her even more. She was such a character at only two. This is a picture taken on our way to the hospital, after I asked her to smile.


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