Ramblings on Muscular Dystrophy, because I need to

In the past few days, Dick and I have visited a number of young men with Muscular Dystrophy, checking on and repairing their power chairs. As I list them in my head, I am dumb-struck by the number of guys we know and love with this disease:

Ronnie

Fulvio

I remember those we have lost to this disease, such as Ronnie and Fulvio.

Dick with two of Ronnie's younger brothers

We still closely watch the two younger brothers in Ronnie's family for signs they may be developing MD. Fulvio was the fourth son his mother had lost to this disease.

Stephen (left) and Sebastian (right) are two brothers we have known in Santiago, Atitlan who have MD.  Sebastian recently died from this disease.

Dick recently put Sebastian, their nephew, in his first power chair.  This little guy's disease is progressing extremely quickly.

Daniel (above) and his brother Christian live in Jocotenango, just outside of Antigua.  Their dad has been out of work for over a year after losing his job managing the local Pollo Campero restaurant.

Luis (in the blue shirt), who has MD, with his brother Francisco, who does not.  Francisco did not inherit the gene for this disease.

Wilmer and Miguel live in San Francisco el Alto, in Totonicapan.  Each time we visit, their dad asks us what he can do to make his sons better.  It breaks my heart each time I must tell him there is nothing he can do but love them well for as long as he has them.

We also recently gave a second power chair to Francisco who lives outside of Antigua.  His older brother Javier has had one for a while and they had been sharing it as Francisco has gotten weaker.

Finally, here are the two brothers we visited just yesterday in Texcuaco, along with their cousin, Yelsin.

If you notice, these are often brothers or cousins or nephews. This is because MD is a genetically related disease, striking 50% of the boys who are born to mothers who carry the MD trait. Nephews and cousins often have the disease, too, since 50% of the girls born in these families will pass on the disease to their sons as well.

Can I just say how much I am coming to hate this disease? It is, in my mind, as deadly as childhood cancer in this country.

Praying with Fulvio's mother during one of our
visits to his home.

It is the hardest for me to face when I see multiple siblings in the same family have this disease, and know the future facing them and their parents. Imagine, as a parent, watching your "normal" son suddenly begin to stumble and fall for no apparent reason. Then they can no longer support their weight, and lose the ability to lift their hands high enough to feed themselves. Later, they will no longer have enough muscular strength to even breathe properly, and this will eventually lead to their death. To watch this repeatedly in more than one son is beyond my comprehension.

Please pray for these young men and their parents. Most of these young men we know have a relationship with Jesus, as do their families. That does not make it easier, however, to watch their decline.


Sometimes, for me, it makes it harder, knowing that our all-powerful God could heal them in an instant if He chose to. This leads me to the conclusion that their disability has a divine purpose. As when they Jews asked Jesus why the man was born blind, He replied, "So that the glory of God can be revealed," I have to believe that God allows these boys to struggle with this sickness to somehow bring Him glory. How I would love to see His glory revealed in miraculous healings, as with the blind man who approached Jesus.

That does not often happen though. Some might accuse us of not having enough faith to bring about theses healings. I don't believe God's ability to heal is limited by our faith, however weak or strong it is. I often bring these young men before Him, as the friends lowered the paralytic through the roof to get to Jesus. But nothing outwardly happens. They do no get up and walk back into health.

Does that mean God does nothing? On the contrary, I believe He heals them spiritually, giving them to ability to face their deaths with faith. They bring Him glory in the way they live each day until they are reunited with Him. They bring Him glory by the very evident confidence they and their parents have that this life is not all there is and that death is not an ending but a transformation.

So what are we to do? First and foremost, we remind them of the Jesus who loves them, whatever their condition. We challenge them to live with purpose and to pray that God will use them, just as they are. (This is where power chairs, computers, and education come in.) As they become weaker, it becomes more difficult as our challenge becomes that of helping them see the glory and wholeness that awaits them when they see Jesus face-to-face.

Francisco y Javier

A few years ago, we met two young men, brothers, both of whom have muscular dystrophy. At that time the older brother, Javier, needed a power wheelchair to get to school since he was too weak to push a manual chair. His brother, Francisco, could still walk some to get around. We offered him a manual chair, but Mom was not ready to accept that he needed a wheelchair while he could still walk some.

Javier, the older of the two boys
was reading the newspaper when we arrived.

The other day we stopped in to see them. Both boys are now in wheelchairs, and had been sharing the power chair, each one using it for a portion of the day. Neither can self propel anymore. The last few weeks, however, the tires on the power chair had gotten so bad that neither of them were using it. Mom and Dad (who works from home as a tailor) had been pushing them to and from school each day, a distance of I would guess three kilometers.

Francisco was playing an "antique" computer game
when we visited

Dick took the power chair to the Bethel shop for the needed repairs. As we were getting ready to leave, Dick asked Dad if they had room for two power chairs in their house. Of course they did.  Francisco lit up the room with his smile at the possibility of having his own power chair. We asked the boys whose chair should be able to go faster. . .and they both said, "Egual" (the same).

So, we are looking for another power chair which will work for Francisco so the boys no longer need to share.

This is such a neat family. How many parents would push their children so far just to get to school, let alone take the risk of traveling on foot along busy and hilly highways? These folks so desperately want the best for their boys. Learning is so important to them.

The sad truth of this situation, however, that since both boys have Muscular Dystrophy, they will most likely not live into adulthood. Some question the validity of putting so much time and effort into their education since they will probably never "benefit" from it financially.

The way we see it, God has continued to keep these young men with us for a reason. He has a plan and purpose for their lives, however long they might be, just as He has a plan for us. It is our responsibility to do everything we can to help them carry out this plan as best as they see it.

Javier with some of his neighborhood friends--
I think they were curious to find out what the gringos were up to!

Right now, His plan and purpose for them seems to be attending school. Who knows the impact their presence in there school has on their classmates, or on their neighbors who see them struggling so hard to get an education in an area where many boys their age don't bother.

I know their determination and their courage impacts me each time I see them. I know that the dedication of their parents to give them the best possible life even as they watch their beloved sons decline physically, motivates and inspires me to keep advocating for the kids whose parents are not so dedicated.

So we will continue to do what we can to give them the best life they can have, for whatever time they have left. Some would call this a "quality of life" issue. On a human level, it is. Imagine the excitement of being able to get around on your own when your body will no longer allow you to do so. That's what power chairs do for these young men.

But beyond that, I pray that what we do enables them to carry out their God given purpose for this point in their lives. I am sure that in supporting them in this effort, we are carrying out the God given purpose for our lives.

UPDATE

Through the generosity of our sponsors, and Dick's never ending hard work and determination, both Javier and Francisco now have their own power chairs.

The boys showing off their power chairs

Please know, if you contribute to our wheelchair or battery funds, you are helping to change lives.  These donations are not just a one time gift, but provide daily freedom to move for many people here in Guatemala who would otherwise be confine to their homes.

Each of the boys proudly displayed for us their "Licencia Educative de Conducir" (student driver's licence) which was given to them by the local traffic police.  Usually these are just for fun, but to these two brothers, this is a sign of acceptance of them on the part of their community as they daily "drive" their chairs to school.

Here, There and Everywhere

While Lauren Chapman was down working with us, I took the opportunity to do some traveling to show her "my" Guatemala--the part that tourists seldom see.

Santa Rosa

We spent one weekend in the department of Santa Rosa, visiting friends there.  Dick had gotten a tablet computer to give to Wilmer, one of the kids who is sponsored through Bethel.

Upon arriving at the house, we were warmly greeted by his mom and sister, and of course, Wilmer and Walter.  Within a few minutes, his two sisters who were in school came running up the road to greet us.  They were at recess when we drove by the school, and they had gotten permission to leave the school grounds for a few minutes to come to say hello.

A short time later, Dad returned from down at the village.  We had unknowingly driven past him, and he, too, came all the way back home so he could visit us.  It is humbling to see how important our visits are to these families.  We often bring nothing but ourselves and our friendship, and this is more than enough for them.

I so love this family.  They are not the poorest family we know, but they are far from rich.  Dad works in the fields, when there is work.  Other times, he is in town looking for whatever odd jobs he can find.  He has even told me that he's willing to come to Antigua if we could find him work.

Education is so important to them.  Mom and Dad have struggled to keep all their children in school, through career education--even the daughters.  This is highly unusual in this part of the country, where girls often stop going to school after sixth grade.  We talked about the possibility of their older daughter coming to work for me when we open a woman's home, and she is ready whenever we are.  Though she has the equivalent of vocational education training in business, there just are not jobs here for her to find.

Wilmer has been doing well with his studies, and Mom told us that he would be "graduating" from sixth grade in primary school, having worked with a private teacher in his home to accomplish this..  He is so excited, and justifiably proud.  She went on to tell me that Wilmer would like to come and live with us in Antigua so he can go to Basico.  The schools where he lives will not allow him to attend because he is handicapped.

Of all the kids I have met, I would so love to have Wilmer live with us.  He is a determined young man, with specific goals for his future.  He wants to study Human Rights at the university level and become an advocate for those in Guatemala with disabilities.  He doesn't want other children to suffer the discrimination with which he has had to deal his whole life.

He's so young, though, only fifteen.  And he has a great family.  I hate to see him leave home so soon if he doesn't have to.  We are exploring the possibility of him completing at least some of his Basico schooling through a correspondence program we use in Santa Maria.  This would enable him to continue his education, but spend more time with the family who loves and encourages him so well.  Of course, when he is ready to start his career training, we would love to have him come to us.  I am so glad that the family approached us so early about their desire for him to be with us.  We will make sure we "guard" a place at our table for him when he is ready.

When we first started to visit, Walter was so afraid of us that he
would hide and scream if we came near him.  Now he loves to be with us.

Walter, his little brother, wants desperately to start his schooling.  He's eight, and the teacher working with Wilmer is willing to take him on, too.  I think Dick has found a sponsor, so, come January, Walter will begin first grade, also working at home, since he, too, is not allowed in the local school.

Often we find that once a child can no longer write, they cannot go to school, since so much of the work here is copy work.  This, however, is not the case with Wilmer and Walter, both of whom, despite their inability to use their legs, have great coordination and strength in their arms and hands.  This makes me so mad, but we know better than to fight it at this point in time.  We could push the issue and contact the head of education for their state, but, we have found time and again, that forcing a school to take a child is not the answer.  The child may be in school, under the protest of the principal and/or teachers, but he will not be treated well.  I've heard of kids lying in the back of the classroom on the floor all day, while the teacher and other students ridicule them.  This is not what we want for these boys.

After we had visited almost an hour, Dick brought out the tablet.  The boys had used my iPad on a previous visit, and fell in love with it.  No, they did not ask us for a computer, though they would love one.  But, watching their excitement with the iPad, Dick decided they could sure use one.  They live in a very isolated area, and don't even have TV.  So, while they won't have internet access, they can make good use of the educational programs Dick downloaded for them.  They could hardly believe that the tablet was theirs to keep.

Wilmer taking his turn using the tablet.

All too soon it was time to leave (though we had actually been there a couple of hours!).  We headed for our favorite hotel in the area, only to find it looking pretty deserted.  When Dick went to ask at what had been the office, he was quickly shooed away by the owner, who said "no more hotel."  We weren't too sure what was going on here, but didn't sick around to find out.  This town is known not to be too friendly to gringos, and the owner had always been suspicious of us.  Luckily, we found rooms in another hotel we knew about only a few miles away.

The next day we headed to Barberena, to visit Bayron and Edgar and their grandma.  A few years ago, my church helped to build them a small house, and we like to check on them when we are in the area.  Bayron is deaf, but has made great progress, first working with a special teacher in his home, and progressing to the point where he now attends a special class in a public school.

As we drove down the highway to their home, we saw Bayron's cousin, Oliver, who walks with crutches, begging in the middle of the road.  We had had a sponsor for Oliver to also work with a private teacher, but he's not interested in studying.  The sad truth is, he probably makes more begging each day than he would even if he finished school.  Jobs are not easy to find, especially when you can't walk.  Add this to the fact that his father is often intoxicated since his mother passed away a few years ago, and we can understand (though not agree with) his decision to quit school.

Dick bought him a coke, and he agreed to show us where Grandma and Edgar were working that day--in the local garbage dump.  When he is not in school, Edgar helps Grandma sort through the garbage that comes in daily, looking for a few things to recycle to eek out their meager existence.  We had never been to this dump, and were a bit concerned about just showing up, but Oliver assured us that it would be okay.



As soon as we pulled in, Edgar spotted Dick's car and came running over, followed by Grandma.  We didn't have too much of a chance to visit, since in the few minutes they were with us, they missed out on two new loads of trash to sort through.  They seemed to appreciate us stopping by, though, and we were able to leave them and a couple of other families working at the dump, with some food packages.

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They had told us that Bayron was down working at the "Chatarero" or scrap metal recycling.  We stopped by to see him, and he was elated.  He was a little disappointed that we would not be taking him on an outing this trip, but was happy to see us nonetheless.  While he cannot speak, he is very good at making himself understood, and seems to be able to read lips at least some of the time.  When we could not get our point across, a couple of young men sitting by the road, who seemed to know Bayron pretty well, helped us out.  It was good to see that they kind of look out for this little guy, and he seems to respect him.  He needs some good males in his life.

We didn't feel comfortable taking pictures at the Chatarero,
but here is a picture of a bit younger Bayron with Edgar
and his cousins.  You can see how he has assumed
the role of protector of his family.

The determination of Bayron and Edgar, brothers who have been abandoned by their mother after their father died, is impressive.  Grandma has taken it upon herself to raise them, and is doing everything she can to give them a better future.  Dick and I spent quite a bit of time brainstorming what we might be able to do to improve their situation.  Perhaps, when he is a bit older, Bayron can come to live and study with us in Antigua, and Edgar could come as his "caregiver" and continue his education.  But, for now, they go to school in the morning, work in the dump in the afternoon, and are looked after as well as possible by Grandma, who does the best she can.

This type of visit is hard--emotionally, psychologically, and spiritually.  To be confronted with so much need, and so great a desire for a better life, and find there is little we can immediately do to help them is overwhelming.  But these friendships are important.  If all we can do is continue to let them know we care, encourage the boys to keep studying, and help with sponsorship so they can, that needs to be enough.  I so wish it were more, however.  They need so much more.


Lake Atitlan and Patulul

Lauren really wanted to see our famous Lake Atitlan, and Dick and I decided we could use a "fun" trip, so we decided to take her up there one weekend.  As usually happens with us, part of our fun is visiting folks we know around the lake, and this was not exception.

We stayed in Panajachel and took boats criss-crossing the lake to visit the various villages.  This is usually no big deal, but, at one town, we faced the challenge of rough waters and a "floating dock."  It was a challenge to get out of the boat onto the dock, but at least they were both being moved in the same direction by the waves.  The biggest challenge, though, was getting from the moving dock onto the fixed one, though with the help of Dick I managed, even with my short legs and ample derriere. Lauren was kind enough to archive this memory for us, and, to exercise a bit of humility I'm sharing it.

We stopped at Santiago Atitlan to visit the family of one of our friends, Sebastian, who recently died from Muscular Dystrophy.  His brother Stephen, also has this disease, and we wanted to see how he was handling this loss.  We took a tuktuk (three wheel taxi) up to where his father lived, and found no one home, though we had a great visit with some of the workers at a school next to their house.  We then headed up the road to their mother's house in another tuktuk (yes, Lauren, Dick and I could all fit, much to my surprise), and, thanks to Dick's eagle eye, encountered them just outside the town. Stephen and his mother were headed to visit Sebastian's grave and were so glad to see us.

Fortunately, Stephens step-brother Pedro was there to help us with translation.  This young man, shown here on the right, is eleven years old and speaks fluent English, Spanish and Katchiquel.  Since Stephen knows little Spanish, and his family knows none,  Pedro was a great help in allowing us to communicate with them.  Our friendship with this family, though, shows how love transcends the limits of our language, and we are blessed to know them.

The next day it was time to head back to Antigua, but not before we stopped to visit another of our "grandchildren," Jessica who spent almost a year in malnutrition at Hermano Pedro.  Though her mom is a widow with five children, a son-in-law and a grandson living with her, this family seems to be doing well, and Jessica is thriving in her home environment.  Mom often calls me, not to ask for anything, but just to tell us they miss us and see how we are doing.  Relationships like these keep me going on the hard days, and I am always encouraged by visiting them.

Blessed by Those Who Have Been Blessed

While I'm often tied down with the house and school and don't get to travel much, when I do, it's always a blessing.  (I have to admit, though, I dread it ahead of time. . .especially with the preparations I need to make at the house for me to be gone even for a few days.)

Lauren Chapman's visit was a good excuse for me to get away for a few days, though, to show her the side of Guatemala most gringos never see.

We took this opportunity to visit a family of seven who recently lost more than everything when a drunk driver plowed into their house in the middle of the night, killing two of their seven children.  When they took two of the surviving children to the hospital, their neighbors robbed them of what few things that were not destroyed in the collision.

The youngest daughter was a bit afraid of us, but she warmed up a lot
when Dick "found" a coin in her ear!

Through a friend in the US, Dick learned of their situation and went down to visit.  After posting a story about them on his blog, donations flew in to help them rebuild their lives.  And they are doing so.

Interior of the Perez family's new home

They have moved to Santa Rosa, far away from their memories, and, with the funds provided, have in only about a month, built a home for themselves.  When we were there, they still needed doors, windows, and a floor.  Dick gave them funds to buy the door and windows, and I'm sure that by now they have put them in.

This house was not built by a mission team.  The work was done by the family and local tradesmen.  But it could not have been built without the help of missional minded friends in the US.  This is a great example of God's people working together.  Through their donations, the family was able to not only construct a new home, but provided work for local artisans in the process. . .connecting them immediately to their new community.

They could not be more proud of the new home which they have helped build with their own hands.  They are so grateful to so many people who they might never meet, but showered them with the love of Christ.  I don't know that the folks in the US who sent us donations feel the same sense of satisfaction that teams who come here to build houses do.  I'll tell you, though, they should and more so.  They gave expecting nothing in return--not even the good feeling that comes from being able to say, "Look at what we did!"  I doubt if many of folks have even shared with their friends at home who generous they have been.  But make no mistake. . .God sees and He knows, and He blesses in return.

I had not previously met these folks personally, but immediately fell in love with them.  While they had every reason to be bitter and angry, they are not.  They are nothing but grateful.  To God and to His people who have helped them in their most desperate need.  They have forgiven the man who crashed into their house.  As the father said to us, they themselves would be destroyed if they chose to hate.  Through love they can move forward.

Don't for a minute, though, think that this has not been hard. . .it's been tremendously hard.  Mom bursts into tears as she tells me about her two little ones who are now with Jesus.  She misses them terribly, but is confident that she will see them again in heaven one day.  She tells me how she must continue on for the sake of the five remaining children.  She explains how she can only do this through the strength of Jesus, and I can see in her eyes just how difficult this is for her.

Photos of the two children killed by the drunk driver

The older boys are not yet in school.  Their previous school had not sent the correct records for them to enroll in Santa Rosa.  They plan to return to school in January, though they know they will have to repeat their grade.  They are grateful, however, that they will be able to continue studying.

Please continue to keep this family in your prayers as they heal, rebuilt and more forward with their lives.

Lauren Learns About Guatemala

In late July and early August we were blessed by a visit from Lauren Chapman.  Her mom is a friend from my days as the Preschool Ministry Director at Westside Church, but I hadn't seen the family since the moved to Kansas City a number of years ago.

I was quite surprised, then, to receive an email from Lauren, asking if she could come work with us.  She just graduated from Truman University with a degree in Spanish, and has begun her masters there in teaching Spanish.  She wanted to practice her Spanish along with being of service, and her mom recommended us.  (Thanks, Michelle!)  I had not known Lauren very well at Westside (knew her little brother Caden, though, from walking the halls with him!) since she was older when I was in preschool, so I didn't quite know what to expect until she got here.  I knew her mom, though, and if Lauren was anything like Michelle, I knew she would be amazing.

Lauren with her Mom, Michelle

I was right.  Lauren took to Guatemala immediately.  She was so eager to learn everything she could about this country and its people, so that when she is teaching, she can share not only the language, but an appreciation for Hispanic people and their culture with her future students.

I believe, though, that Lauren got more from this trip than she was expecting.  We spent literally hours discussing faith, philosophy and life style.  We struggled with the differences between American and Guatemalan culture, and tried to discover, through them, what a truly Biblical lifestyle might look like.  It was like a three week mini-retreat for me, as I thought about the "deep" things of my ministry here in Guatemala.

Here Lauren is teaching Miguel and his little brother David
how to do card tricks

She spent time with our guys, challenging their view of God, and, interestingly enough, women.
(El machismo is still strong here in Guatemala, and our guys are not immune.  They have much more interest in what a woman looks like than what's inside her, and think nothing of ogling women on the street, or making inappropriate comments to each other about the women they see.  Lauren, given her age, her beauty, her competence in Spanish, and her love of Jesus, was the perfect person to address this.)  She talked freely with them about her faith, asking many questions about their own walks with God.

This is not the "active" type of mission service most come seeking.  Honestly, it's too challenging for most short-term missionaries to enjoy or have the confidence to try.  But this is greatly needed.  The ability to form a relationship with the local people quickly enough to earn the right to disciple them is critical to impacting this culture for Jesus.  Lauren was great at this.  Did anyone say a "sinner's prayer" with her?  No.  Did she help both believers and unbelievers move closer to Jesus?  Without a doubt.

Lauren did participate in the more active parts of our ministry, too.  The kids in Santa Maria loved her.  While she has trained to be a secondary school teacher, she has all the characteristics of a wonderful elementary teacher, too.  She can play a mean game of "Duck, Duck, Goose."

Lauren had never really been exposed to people with disabilities as she was growing up. I think the sheer numbers of disabled here were a shock to her.  If she was uncomfortable around people who looked or acted differently, she never showed it.  Her love for all those we met was apparent.  From talking with her, I think this might have impacted her personally more that what she learned about Guatemala.

Holding one of the babies at Hermano Pedro Hospital

We did some village visits while she was here, and she was at home with the people we visited almost as soon as she walked through the door.  (I don't think Lauren has ever met a stranger!)  She often took off on her own, visiting with the teens in whatever family we were visiting with a confidence that I seldom have seen in more "mature" people who come here.

The love the people we visited had for her, too, was obvious.  

When we visited Nueva Santa Rosa, she became fast friends with Walter and Wilmer's sisters.  They talked, sang, braided her hair and even gifted her with a stuffed animal when we were leaving.  She has friends for life in these two young women.

We may not think that a one time visit would have much of an impact on the families.  That's true, if all we do is drop off some food and say a quick prayer with them and move on to the next house.  But, when we take the time to really visit (sometimes a couple of hours or more), listen to their stories and share ours with them, just share ourselves with them, I know they never forget it.  I know this because many of our families ask about folks we have brought to visit, even years ago, and talk of them as friends, asking when they will be back.  This giving our self is much harder than building a house, or bringing gifts.  This giving, however, has lasting impact.

Lauren returned to the States almost a month ago.  There's not a day that goes by that I don't think about her and miss her.  I am so grateful to her and her family for the impact she has made on my life and the lives of the people to whom we minister.  I can't wait to see what God has in store for her next!