Thursday, December 29, 2016

Death, Hope and Christmas

In my last blog I wrote about our little Margareth (Maggy). And now I must write that she is with Jesus. 

We were able to bring her home from the hospital on the morning of Christmas Eve. I spoke with the doctor and explained the set-up of our home. I told him that we were well equipped to administer her meds through her IV port and that we had all the equipment we needed. So, he allowed her to come home for Christmas.

We arrived back home mid-morning and got her settled in our own hospital ward right next to the Christmas tree. We had the oxygen concentrator ready, along with a suction pump and nebulizer. She settled in and was breathing well, with her oxygen sats in the mid 90’s. She actually seemed stronger and better than we had seen her to that point.

Because of the extensive amount of care she required, we had to establish a printed schedule of feeding, oral meds, IV meds and nebulizations. I spent much of the afternoon making that schedule and administering meds.

Our normal Christmas Eve tradition is to eat snacks and watch the movie, The Nativity Story. We had just settled in and pressed play at around 8:55, when Wanda said, “Daryl, she’s not breathing!”

For the next 35 minutes, Katie Riley, our staff nurse, and I did CPR. Let me just say that I could not have had a better partner than Katie. She was professional, composed and very methodical and precise. We worked together well with me doing respirations while she did compressions until I was exhausted. Then we switched without missing a beat.

Twice Maggy began breathing again, but her breaths were shallow and did not continue for more than a few cycles before she stopped again. At times she had a heartbeat, so we stopped compressions. But her heart would gradually slow, get weaker and then stop, so we would resume compressions. 

But at 9:30 she had no heartbeat and we could not get her to breath. In my heart, I knew she was gone, so we stopped CPR.

I have found myself in similar situations to this numerous times in the last six years. When you are in the midst of the crisis, adrenaline carries you. You go into a machine like mode of breathing and compressions. You focus on what you have to do. And then, when it is over, you are suddenly overwhelmed as the emotions that were put on hold suddenly come flooding in all at once. And that is exactly what happened. 

We hugged and wept together. We all loved little Maggy, and we had hoped that she could survive until she got stronger and received heart surgery. So we grieved and grieved deeply. And, after a while, I slipped away to be alone.

I walked to the far side of our outside steps, sat on the floor and laid my head on one of the steps. And I sobbed. I cried so hard I could barely breath. Because, in addition to grieving the loss of a precious baby, I also had a huge weight of guilt. If I had not talked the doctor into sending her home for Christmas, Maggy might still be alive.

Wanda found me like that. And as she tried to comfort me, I unloaded all that guilt on her. And, at one point, I told her, “I don’t know if I can spring back from this. I don’t think I can keep doing this.” And I really was not sure that I could. 

The next few hours are a blur of visitors, telephone calls, a casket delivery and arrangements discussed. I called our social worker, who told us how to proceed. Maggy’s body was prepared and placed in the casket next to our Christmas tree. And, in the middle of it all, we comforted one another.

At about 1:00 am on Christmas morning I walked over to our doctor’s home with Maggy’s file that he needed to complete her death certificate. Dr. Augusto had never met or examined Maggy, because she came to us late in the evening and was hospitalized the next morning. And when she was discharged he was away visiting family for Christmas Eve. So this was his first chance to see her records.

He spent a few minutes reading her medical file and then looked at me. He told me, “Daryl, she was a very sick little girl who was not going to live. You know that don’t you? There was nothing you could do to save her.” When I began to cry he said, “It was good she died in your home with your family instead of in the hospital.”

As I walked back to our house, I felt that God had given me what I needed to make it until morning. I finally laid down to a fitful sleep at around 2:00 am.

The next morning at 7:00 am, Jeremiah, Joel, Andi, Stevie and I walked to the graveyard and dug her grave. Dale showed up and lent a hand as well. We then returned to the house, cleaned up and had a brief service for Maggy. I read of the birth of Jesus from Luke 2 and spoke about how the birth of one baby gave us hope during the death of another. In reality, the only reason that we have any hope at all is because of that one baby that was born in Bethlehem, and because if his death 33 years later. A couple of other spoke as well, then we said our goodbyes. 

We had a small procession of people who walked to the graveside, and some of our neighbors saw and joined us. I said a few words and prayed, and we lowered her tiny casket and filled in the grave. And then we returned home.

I knew that we needed to salvage what was left of Christmas for the kids, so when I arrived back home I loudly announced, “The funeral is over! It is time for Christmas!” We signed in with our daughters, Carissa and Taryn via Skype, and they participated from Uganda. I shared the story of Simeon with the kids, and we then opened presents.

In spite of our grief, we had a good time together. The children loved their presents, and there was laughter, photos, and hugs. We then enjoyed a huge lunch together. I believe that the children will have pleasant memories of the day, even in the midst of the painful goodbye.During this time, I have felt God’s presence, even during the darkest moments. I don’t know what to call it, except His smile. I know this is the life to which He has called us. I know that He loves these children, including Maddy, far more than we ever could. And I also know that He is pleased when we love them, as well. So, we keep moving forward.

I have struggled somewhat since Christmas Eve. Call it a general sadness. In addition, whenever someone speaks in a urgent voice my heart rate escalates quickly in a panic. When falling to sleep, I often jerk awake suddenly, thinking that Maggy is still with us but she has stopped breathing. And I struggle with paranoia regarding the children’s health. I guess you might call it a mild case of PTSD. 

Last night we made the decision to receive a three year old girl named Genesis into our home and family. She has severe cerebral palsy and cognitive delays that were caused, we believe, by meningitis.

I am truly proud of my family, which includes our interns, that is willing to step up again so soon after the very painful loss of little Maggy. Every one of them understands the importance of grieving, but they also understand it is important to keep serving and reaching in the midst of our pain. Each day they continue to humble and amaze me.

The courts will not be open to order the move until January 3rd. It will likely take a few days after that, due to the backlog of cases that will be waiting. She is currently in an orphanage that is not equipped to care for special needs, but, thankfully, I know it to be a safe place that cares well for its children. Please pray for little Genesis and for our family and team during the transition that lies ahead.

I wish I could tell you I have the answers to all our huge questions. I wish I could tell you that I am strong and stable. I wish I could say I do not continue to struggle with my own fears and pain. But I cannot. I am experiencing what I believe to be slight depression with lots of accompanying fatigue. I have not struggled like this since Thania’s very traumatic and sudden death in July 2013. 

But I can tell you this: God is good, and He is my Sustainer. In my weakness, He is strong. So, for now, I will be weak and allow Him to be strong. And, together, we will advance and not retreat.

Happy New Year from Guate!
Daryl, Wanda and the Crew

Friday, December 23, 2016

Merry Christmas and Happy New Year!

Close Calls & Christmas

Let me describe our week with one word. WHEW!

It all started on Monday when we received a call from the courts in Guatemala City. They told us they had a three month old little girl with microcephaly and wondered if we would take her. Our home is full, but we also know that we specialize in brain damage cases. So, we agreed.

Little Margareth arrived on Monday evening at around 8:30, and the first thing I noticed was that she was not microcephalic. The second thing I noticed was that she was very malnourished. When I questioned the social worker who brought her, she told us that she, instead, suffered from a severe seizure disorder and had spent her entire life in the national hospital Roosevelt. She also told us that she was being treated for a cough and we simply needed to follow the treatment plan established by the hospital.

She showed signs of severe low-tone cerebral palsy. She was unable to support her head at all, and her arms hung limply at her sides. She was very unresponsive. The problem with this situation is that we have never seen her before this moment. We have no baseline against which we can measure her current status. Is this “normal” and a result of brain damage? Or is there a problem that needs to be addressed.

And this is where I made a nearly fatal mistake. I trusted the hospital. Roosevelt is the nation’s largest and best national hospital. They have the best doctors and equipment. And they usually provide semi-decent care. The hour was late by the time the paperwork was completed, and I decided that, since she had just been discharged a few hours earlier, she must be stable. So I decided to wait until the following morning to have our doctor come and check her. That decision nearly killed a precious little girl, and I have kicked myself repeatedly.

She slept in a porta-crib in our bedroom so that we could monitor her closely. She coughed during the night, and Wanda got up with her early to take her downstairs and hold her while she slept. I eventually got up and started getting ready for the day.

Suddenly Wanda burst into the bathroom where I was and said, “Something is wrong! Is she breathing? I don’t think she is breathing!” I grabbed her, took her to our bed, and checked her breathing and pulse. She had, indeed, stopped breathing, so I started CPR.

After a moment, I realized that she had phlegm that was blocking her airway, so I ran downstairs to our changing room where we keep a suction machine. I attempted to suction her, but the machine was malfunctioning (even though I inspect it regularly to assure that it is working well). I cleared her mouth and continued CPR while Stevie worked on the machine and got it working. 

This continued for around 5 to 7 minutes. I will be honest, I thought we had lost her. I would do several courses of compressions and breathing, and would then do an abdominal thrust to help clear phlegm. I could feel air flowing into her lungs and felt I was getting good compressions, so I kept going. 

After what seemed like an eternity, I blew air into her lungs and she coughed, bringing up a large wad of phlegm…and started breathing again! Shortly after, she began to cry, and what a beautiful sound that was!

Meanwhile, we had been trying to reach the rescue squad, but their phone was not on. (Yes, you read that right.) So I ran upstairs to finish getting dressed (I was wearing boxers and a t-shirt for this ordeal.) and we started grabbing items to take to the hospital. At the same time, Stevie had gotten the suction machine working and was able to suction out additional mucous. So Wanda and I headed to the hospital via a breath-taking ride in our new ambulance with Margareth. We were seen quickly and she was immediately admitted.

And this was when I collapsed in exhaustion. And, as more info came back to us, I moved from fatigue to anger. Little Margareth had a severe case of pneumonia, which means she had pneumonia 16 hours before when she was discharged from Roosevelt. And, as more info came to us, I got angrier. She also had severe anemia, which may require a transfusion. And a lung infection. And a heart defect. All of these were undiagnosed and untreated when she was discharged the day before, in spite of over three months in that hospital. And this negligence and incompetence nearly killed her.

And then I got angry with myself. I should have called the doctor and had him come the night before. I should know better than to ever trust any national hospital. I should always verify the health of a child immediately. And I did not. And I nearly killed her as a result.

Finally, I settled on something besides angry and guilt…gratitude. She was still alive. God had orchestrated details in such a way as to save her life. Katie, our nurse, was away in Guastatoya on a village trip. I had been scheduled to leave early that morning and head to the far side of Guatemala City, but at 5:30 am I received a message from my friend telling me that power lines were down across his driveway due to high winds, so we could not meet. As a result, I slept in a little longer and was home when the crisis hit. Praise God for His orchestration of power lines and schedules to save His children!

Our little girl has a huge battle ahead. I am typing this blog from her hospital room while this very sick little princess lies beside me for the night. We have to get her past this current crisis, help her gain weight and get stronger, and likely have heart surgery. Lots of work lies ahead as do lots of  expenses, because I guarantee you that the national hospital will not touch this little girl again if I have anything to say about it. Please pray for her.

After the immediate crisis passed, I realized some important plans we had made were in jeopardy. As a part of our Christmas present to our kids and interns, we had made arrangements to rent a home in Antigua for a night away as a retreat. All the Fulps and interns were to spend that time together while some of our nannies spend the night in the home to care for the other kids. We have faced some serious challenges and losses in the last year, and we really needed the time together. But, with Margareth’s hospitalization, I did not see how we could follow through. At least one of us would have to stay at the hospital with her at all times.

But the Beyer family came to the rescue! Dale, Anita, Kristin, Kathlyn and Alyssa took turns with shifts so we could all go away together! Words cannot adequately express how grateful we are for them!

So, yesterday morning we all headed out for a wonderful time together. We swam, played games, laughed and talked for hours. I have not felt so relaxed in a long time.

Then today we left the home and headed out highway CA-1 toward Lake Atitlan. Every year during the month of December children come out and stand by the highway and wave at passing cars. Some cars throw out candy and snacks as a part of the Christmas season. So our whole family, including interns, took candy, but that’s not all. We also took coats, shoes, warm hats, toothbrushes, toothpaste and small toys. Instead of tossing candy, we stopped and were swarmed by children and families as we passed out the items.

This is a poor region, and many of the kids were without decent shoes, coats or hats. The region is almost 9000 feet above sea level, so it is chilly most of the time and cold the rest of the time. Many of the children were dirty and poorly clothed. They lined up and we gave away almost everything we had.

One powerful moment came when a lady with special needs approached us. She was barefooted and needed shoes. But we only had shoes in children’s sizes, so I thought we would have to send her away with nothing. However, I watched as my wife gave her her own flip flops. And I fell in love with Wanda all over again.

I have struggled this year with finding my “Christmas Spirit.” Life is busy, and we have been dealing with some very sick children in our home. I have just been overwhelmed and a little nostalgic for an “old fashioned North Carolina or Ohio Christmas.” It just has not felt like Christmas.

But today I found what I was looking for. As we stood surrounded by a crush of children, I was reminded of what Christmas really is. It is not about family. It is not about cold weather. It is not about the smells and memories of my childhood holidays. It is not a feeling or emotion.

It is hope, joy, and love that we only have because Jesus came to be God with us. In the most astounding event in human history, God became one of us so that He could be with us in every moment. And through this, we have what the entire world longs for, even if they do not realize it. And due to this incredible event called Christmas, we have the incredible privilege of taking hope, joy and love to the world every day and in every interaction. Today, on the side of a highway, surrounded by a crowd of children, I found Christmas.

If you are struggling to find Christmas this year, it is because you are looking in the wrong place. You won’t find it in traditions, decorations, cookies, gifts or parties. You will find it among the hurt and the broken who are looking for what you have. Go find your Christmas today.

God bless you, and Merry Christmas!

Daryl, Wanda and the Crew

Wednesday, December 7, 2016

Five Words A Christ-follower Should Never Utter

It appears we are losing another one…

Edy joined our home right after his second birthday, but you would never have guessed his age. Due to severe malnutrition, he was, and still is, tiny for his age. His mother abandoned him, and his grandmother did the best she could. But the coffee and tortillas that were all she could afford were just not sufficient for an infant.

It is unclear if his brain damage was due to the malnutrition, if it was from complications in  pregnancy or birth, or if both were contributing factors. But the results were devastating. Our neurologist informed us that 80% of his brain was damaged or dead, including his brainstem, which controls his autonomous functions such as heartbeat, breathing and body temperature. He also told us that he likely doesn’t have long to live.

He is blind and severely cognitively and physically impaired. Yet his smile and laugh can light up a room. His laugh is the most contagious I have ever encountered. You cannot hear it without laughing yourself.

Yet he seems to be slipping away. Due to the brain damage he suffers from apnea. He simply stops breathing. He exhales and doesn’t inhale again. And these instances are terrifying. 

We have different levels of intervention to get him breathing again, and until recently they have worked well. In some instances, a loud noise such as clapped hands will startle him and restart his breathing. At other times it requires a sudden pat on the back or chest. If these don’t work, we mist his face and chest with cold water, which has always worked.

But as time passes, the frequency and severity of these episodes are worsening. The loud noises and pats seldom work now. The cold water occasionally does. But we have recently had to resort to giving resuscitation breaths. We pinch his nose, seal our mouths around his, and forcibly blow air into his lungs, just like we would while performing CPR. And, to this point, this intervention has restarted his breathing. But it seems his time is running out, and I find myself wondering when this final step will stop working.

Last night, after a particularly scary episode in which I administered the resuscitation breath, I prayed a one sentence prayer that was more of a statement…

“God, I can’t do this again!”

In the last three years we have buried four of the children from our home. These were children that we loved like our own. Esperanza, Thania, Micah and Angelita all came into our home, captured our hearts, and then left us…taking a part of us with them. The grief has been deep, powerful and, at times, devastating. And the thought of facing that again terrifies me. So, maybe you can understand that prayer I prayed last night.

“God, I can’t do this again!”

Yet, even as I said the words, I know that I can and will. We will likely lose Edy, and we will grieve. Oh, how we will grieve. And it won’t be the last time. There will be more children, likely some who are currently in our home, who will begin to decline and slip away. They will leave our arms and go straight into the arms of Jesus. And there will likely be others whom we have not yet met.

The call will come. We will be told of a sick child that needs a home. We will be told that they are very severe. We will be told that they may not live long. And we will say “Yes,” against every piece of common sense that tells us to guard our hearts and our sanity. And we will do it all over again. Because if we don’t, who will?

Over my adult lifetime, I have often heard believers utter words that should never come out of a Christ-follower’s mouth. This sentence usually follows a conversation in which they hear of people serving in a way that sounds extreme to them. They open their mouths and the words come out…

“I could never do that!”

These words are quickly followed by their reasoning for why they should never be expected to do such a thing.

In response to foster parenting: “I could never do that! I would love the children too much!” (If you have ever uttered that to a foster family, please go find them and beg their forgiveness.)

In response to the mission field: “I could never do that! I wouldn’t want to uproot my children!”

In response to caring for dying children: “I could never do that! It would break my heart!”

In response to going to dangerous parts of the world to minister: “I could never do that! It would put my family at risk!”

As Jesus followers, the words “I could never do that” should be stricken from our vocabulary. They should be taboo in our household. I need to stop allowing it to pass my mind, even in the heat of crisis. These are spiritual profanity.

What’s the big deal? Why are these words so forbidden? Here’s why…

  1. If we cannot do it, who can? If we have the same spirit that raised Christ from the dead living within us (Romans 8:11), how can we believe any work that would bring glory to Jesus Christ is beyond what we can do emotionally, physically or spiritually? If we, the church of Jesus, cannot do something, then who can?
  2. They deny God’s power and rely on our abilities. We speak to the world about the greatness and majesty of God, yet deny His ability to accomplish His work through us. It makes our faith appear foolish a weak, because it is, at least if we think this way.
  3. They place a limit on our level of obedience. Do we really want to tell our God who left His throne and hung on a cross that there are things we are unwilling and unable to do for Him? What can He ask of us that He is not worthy to receive?
  4. They slam the door on God’s calling in our lives. This is important! The things that most break our hearts are likely the things with which God wants us most involved. What most stirs your heart? What makes you shed the most tears? What injustice keeps you awake at night? These are the areas in which God is moving in your life. But if we shy away from these areas of brokenness because they are hard to face or contemplate, we will miss our calling.

This life we are living is both hard and wonderful. There are moments that the beauty and privilege of this ministry and calling take my breath away. There are other moments in which I am brought to my knees in brokenness and grief. And, through it all, I feel God’s smile.

Almost everyone we encounter loves the ministry we do. They love the IDEA of children with special needs being cared for and loved. They love the IDEA of children who are dying being surrounded by a loving family. They love the IDEA of ministering to the broken and poverty stricken. But very few love the idea of actually doing it.

I occasionally am told, “I would love to do what you do!” And my response is always the same. “Great! Then do it! I will help you!” And that is where the back-peddling begins. And that is where those five stinking, lousy, good-for-nothing words rear their ugly head.

What breaks your heart? What is the one thing to which you find yourself saying, “I could never do that”? I am begging you…please stop saying it. Instead, hit your knees before the Savior who went to the cross for us. And ask him...

 “Jesus, do you want me to do that?”

If you can find the courage to do so with an open and obedient heart, it will likely transform your life and take you to places you have never imagined. Who knows? You might even find yourself loving a dying child…and feeling God’s smile raining down on you. And He will give you what you need to do what you never thought you could.

Blessings from Guatemala!
Daryl, Wanda and the Crew