The (begining of a) Story of a Chair

I met Tapiwa in the summer of 2013. Tapiwa is a sweet little girl who lives in Malawi and my friend, Brooke, and I would like to give her a gift this summer... and we need your help. But before we get into that, I think there are a few things I should share with you.

I’ve learned a lot about partnering with organizations who are working towards poverty alleviation in recent years. I’ve learned a lot about ways to support their long-term work and encourage assets already at work in each community. And it’s because of this that I recognize the limitations of material gifts. Material gifts rarely solve problems long-term. Out of the context of relationship, they can even set back efforts that have made strides away from material poverty over long periods of time. So let me start by telling you a little about Tapiwa.
 

It was late afternoon when I met her. Even in the daze I found myself in after 24+ hours of travel to the country of Malawi, I easily recognized a child with Cerebral Palsy (CP) as she entered the living room of the children’s home that was welcoming us. Tapiwa, or “Tapi” as I would come to know her, sat quietly in her wheelchair as her brothers and sisters ran excitedly around her. I recognized the way she sat, how she placed her hands, the way she held her head- Tapiwa had Spastic Quadriplegic Cerebral Palsy*.

There was a time where meeting children or adults with special needs like Tapiwa’s intimidated me. How to relate to them didn’t come naturally to me- not knowing what to say or what not to say. There was a time when those four words I now easily associate with Tapiwa were as foreign to me as they may be to you now. However, time and relationships over the years have brought me to a different place entirely.

I was curious about Tapiwa that day-we had come to Malawi to work with special needs children, but I hadn't really know what that would mean in the context of Malawi. Different cultures, I had learned, sometimes define “special needs” in different ways. It was pretty clear in the first few minutes of meeting her that Tapi didn’t walk or speak. I wasn’t sure how much she was even able to interact with the world around her. However, when her brothers and sisters started to sing a song of welcome for us, Tapi lit up! Clearly music was her passion and one of her favorite ways to interact with those around her. She smiled and laughed and bobbed her head to the music.

Though her love for music was clear, I left excited to get to know this little girl more as our time in Malawi continued. I learned that she had been left in COTN’s care many years ago. I learned that she had suffered a traumatic brain injury as a young child which left her with severe developmental delays. And I learned that she had a large support system through COTN. I learned that they did whatever they could to get Tapi what she needed. I learned how much her new family loved her.

Fast forward a few years and I now find myself sponsoring this little girl (not so little anymore as she approaches her 16th birthday). My sponsorship started with the profits from a book some friends and I wrote, illustrated, and published. The Tree Keeper is a story about children with special needs in Africa banding together to use their strengths to encourage each other and accomplish a heroic feat.

After using that book to encourage and educate kids and teachers in Malawi, the team that put the book together sat down to decide upon a use for the profits raised in the U.S. from the books. Sponsoring Tapiwa for a year was an easy choice for the group. Tapiwa lives in one of Children of the Nation’s children’s homes that provides for all of her and her brothers and sisters’ needs through child sponsorship. But, after that year ended, the book’s illustrator (Brooke) and I, decided to continue her sponsorship between the two of us.

Which brings me back to the gift we’re hoping to give as I return to Malawi for the fourth time this summer- a gift that stems from years of getting to know Tapiwa and her caregivers. It comes out of an ongoing relationship with the organization that provides for her. It is based on first-hand knowledge of the challenges specific to where she lives and what she does on a daily basis paired with input from those who care for her.

Based on all of that, we are hoping to bring Tapiwa a new form of transportation this summer. Many in the special needs community in the U.S. will be familiar with special needs strollers. These strollers are used for older children and adults with special needs that limit their ability to walk. They are often used in addition to the use of a wheelchair for a couple of reasons, several of which apply to this specific stroller and a little girl with CP living in urban Sub-Saharan Africa.

• It is built for rough terrain. The terrain of many villages and building entry ways in Malawi are not suited well for traditional, basic wheelchairs (which Tapiwa already uses). This terrain contributes to faster deterioration of the wheelchairs that Tapiwa has been using over the years.
• It folds up smaller for easier transport. Tapiwa lives in a Children’s Home that provides her with a large and loving family. This means, however, that space in vehicles is more limited when traveling with her large family. Her caregivers are persistent in figuring out creative ways to transport her wheelchair so that she’s able to come along on outings, but a light-weight, foldable chair will help to make this process easier, faster, and safer for everyone traveling with Tapi.
• The seat is built for safe and comfortable travel over rough terrain. With a padded and weight distributing seat, the bumps and hills will be easier on her skin integrity. The 5-point harness will keep her safely seated upright despite the challenges her tight muscle tone presents.

So, it’s for these reasons and a handful more that we are asking for help to raise money for a special stroller for Tapiwa. The first $900 will go towards the purchase of the stroller and the last $100 will go towards the extra cost of checking an oversized item on the trip over there.

I recognize that this isn’t going to solve every problem that Tapiwa, her family, and her country face. In fact, it’s only going to solve one. However, Tapiwa has a lot of people in her life who are doing great work with all of the other problems, but for now, this is just one of many that we can take off of her plate.

Would you consider joining me? Any amount chips away just a little more and I have full faith that this $1,000 goal can easily be met. Gifts are tax-deductible and can be made on my trip site, here. http://bit.ly/2mdEhHX

Thanks for reading. Thanks for caring. And thanks for considering.

 
*Spastic Quadriplegic Cerebral Palsy sounds complicated and confusing, but it’s meaning can be broken down pretty simply. Cerebral Palsy affects the way the brain communicates with the muscles and thus affects the way a person with CP is able to move. Sometimes, movements are the only thing affected by CP, but cognitive functions can be affected as well. This is why a person with CP can have anywhere from above average intelligence to severe developmental delays. The word “spastic” helps define how the muscles are affected- CP can make them too tight, too loose, a combination of both, or hard to balance with. Spastic means that they are too tight. The final word, “quadriplegic”, just tells you how many of a person’s limbs are affected- it could be just the legs, just one half of the body, or both arms and both legs. Quadriplegic means that all four are affected.

The story of a Friday

I've never cared much about Holy Week. That feels like something you shouldn't really say, right? But, I don't know, Palm Sunday, Maundy Thursday, Good Friday- they all just seemed so… liturgical (which, in my brain was synonymous with "boring"). And they're all just leading up to the event we all know is coming, the one where Jesus wins in the end- Easter. So why bother with the rest?

To be perfectly honest, over the last several years attending a church that recognized and celebrated all of these days was actually something that I would go as far as to say was mildly irritating to me. But as the years have gone by, I've gotten used to the eventuality of each of these days every year. I've gradually adjusted to and even began to appreciate some liturgy. I've voluntarily attended Ash Wednesday services two years in a row now. And this year, I was actually intrigued enough to plan to attend all the services offered during Holy Week.

I sit here now, on a gorgeous afternoon, the sun on my legs and the wind in my hair, dwelling on one of the most gruesome stories in all of Scripture. And, on this Good Friday, I'm struck by three specific elements of the sometimes all-too-familiar story.

The first was brought to my attention by my minister from stage this morning. It was one of those little details in scripture that you read over, barely noticing, in anticipation of the intense drama that you know is coming. It happened shortly after Jesus was arrested. He was slapped in the face. And there was something about the way my minister said it, "The God of the universe let us slap him in the face." The God of the universe.

I know that it goes on to tell us about how he was also beaten and crucified- acts that are significantly more aggressive and violent. But there is something just so demeaning, so undermining, so personally insulting about a slap in the face. Think about the sting that you feel even with the figurative slap in the face of a cunningly timed insult. The anger, the feelings of injustice, the desire for revenge-  I know that they each well up in me in turn. And Jesus stood there, with all the power in the universe behind him, and let it happen. For some reason, I've never considered the sentence before. But the more I do, the more it impresses upon me what an act of love and sacrifice Jesus was prepared to enter into for us.

The second thing that stood out to me, was the shouts from the crowd. As the "trial" moves forward, again and again, the people, the religious leaders, and the high priests shout that this man is not their king! That, though he has committed no crime under Roman law, his crime against them is unforgivable. They shout that they have no king but Caesar, they shout that they would like a criminal returned to them instead of letting Jesus walk free. Finally, they shout the word "crucify". Crucify. They shout and chant for one of the most painful, long, public, and violent acts of execution.

As much as I would like to say I would not have been like that crowd had I been there, I can't help but wonder if I might have been. Might I too have been disappointed, expecting a king to over-throw the government, and receiving a carpenter steeped in love and patience? Might I have thought that I knew better than God what kind of salvation I needed and convinced myself that something better must be coming? How often do I choose not to follow God because his plan doesn't make sense to me right here and now? I saw myself in that crowd today. As much as it pains me to say it, I saw a lot of all of us and was baffled yet again at how a love for that shouting crowd could possibly exist.

The third part isn't new. It's been my favorite part of the Good Friday story from the day that I finally understood what it meant. Last week, I was picking out some verses about Holy Week for a project at work, and, upon coming across this one, I almost cried right there at my desk. It's the verse that means nothing until it means everything. It's the verse where the temple veil was torn. I'll never forget learning about that veil, about how it separated the most holy place- the place where God would dwell, from everyone else. About how a high priest could enter but once a year and, even then, with a rope tied around his waist in case he hadn't cleansed himself and prepared the sacrifices just right- a rope that would pull his dead body back out if he in fact wasn't prepared to enter God's presence that day. The veil that signified just how far from God our sin had actually set us.

I've always wondered just how many times they've had to use that rope. If the answer's out there, I don't know it. But it makes me think about how I can now approach God- how the lines of communication are never closed for me. It makes me think about how scared that priest must have been each time he made preparations to enter God's presence. It makes me think of how confused everyone must have been the day the earth shook and that veil tore down the middle when Jesus breathed his last. How long did it take them to realize that the days of entering with trembling trepidation were over? How hard was it for them to believe that, after all these years, Jesus had made another way. From a verse that meant nothing until it meant everything comes the story of a veil. It's a veil that meant everything until, suddenly, because of what happened on Good Friday, it meant nothing.

And that is the story of my Good Friday this year. Sure, I also ate some pizza and played with some kids and wrote my brother a funny birthday card. But mostly, I think I've finally come around to Holy Week. Because of that, I think that Easter, the event we all know is coming, will have all the more to give as I take time to really appreciate how we got there. Happy Holy Week, y'all.

The 4th Question

I should be writing other things right now. I should apologize to the people for whom I should be writing those things. I probably won’t.

I scribbled some of this down in my journal the week it happened. It’s been tucked in a bookshelf along with countless other stories in several unfinished journals for years since returning to my continent of residence. I don’t often finish journals. It feels a little like finishing the chapters of my life contained in them, and I never could quite pinpoint the end of chapters in life. But that’s a thought for another time.

I’ve never really gone any significant period of time without thinking, at least briefly, of this story. It wasn’t a big story. It’s not full of action or adventure. It’s a story of quite and tears and hugs and mosquitos. What makes this story important, I think, is that it seems to grow with me. Though the events are forever locked in place, the implications seem to change with each new season.

And so, for a reason I can’t quite put my finger on, tonight I’m writing it, not any of the other things. This one story, for now, is making its way off of a dusty bookshelf and out into a world where anywhere from no one to everyone can see it. Taking its place in type instead of scrawl and bringing up with it the new implications of my life as it is now, from as it was then.

"Fo dem?", Akili chimed, wondering where I was going at this hour of the night. I filled her in that my roommate and I would be heading down the street to use the phone, calling our families back home. We headed out into the night. I barely noticed the shouts floating up the staircase from the small, one room home below. I was more concerned about bats as we passed the tree they had been known to abide in. As we approached the bottom of the staircase and were shooing goats out of the way, a slammed door reminded me of the vague awareness that I’d had of the argument that must have been occurring below.

As we rounded the corner, we saw Juhudi, a wise-mouthed, funny, and beautiful 8-year-old from our compound, throwing herself onto a stone wall, sobbing. We paused for a moment, not knowing what to do. Crying like this was not common here. Sure, a little kid would cry and whine when they fell or didn't get their way, but usually the aim was to get attention. A child, already 8, and a girl especially, was just not found sitting in the dark crying her eyes out by herself. My roommate said the girl's name in a sympathetic sounding voice, not knowing much else in her language that would be appropriate. We walked over slowly, and I sat next to her. I put my arm around Juhudi, and thought about asking her what was wrong. My roommate sat off to the side quietly.

            Juhudi sat, perfectly still except for the sharp rising of her chest as she gasped for breath between the sobs and the tears that streamed down her cheeks. The three of us sat in silence for what seemed like ages. I decided against asking what had happened, realizing that it was likely to only make things worse for her to want to open up and talk, but have to deal with my limited language skills. I finally just leaned over and hugged her. I worried that this intimate hug would be too much, but my fears proved unfounded as the little girl desperately hugged back. I periodically loosened my grip slightly, inviting Juhudi to pull away if she so desired, but she only hugged tighter, her sobs now increasing and her tears flowing freely.

            After the hug had lasted several minutes, I half-wrestled her little arms from around my neck, and pulled her up onto my lap. I started singing. I don’t know why, but softly, and in a language Juhudi couldn't understand, I sang an old hymn. As we rocked gently, Juhudi's sobs subsided, and her tears slowed. I nodded at my roommate’s questioning face, hoping to give her permission to make her way on our errand without me, knowing that the time she has spent sitting humbly off to the side had been filled with hurt and desperation for this broken child.

Juhudi and I sat for what seemed like hours, as I did my best to cover her arms from the mosquitoes that had begun to swarm us. With a tight squeeze, I eventually broke the hug and turned the child around on my lap to face me. I gently pulled her downcast chin up towards my face, and wiped her tears aside with my thumbs.

I had been thinking of several options of what I would say to her. Piecing together what encouraging thoughts I could with my limited vocabulary in her language. I hadn’t consciously settled on any of them when I said, "Juhudi, don't cry.”

A slight nod showed that she followed my attempt at her language. "You are very smart. Do you know that?” I asked her. She looked down and I again pulled her chin up and looked in her eyes as I repeated, “Do you know that?”

She nodded quietly. “You are beautiful. Do you know that?" I continued. With a slight smile she nodded with a quiet “yes” this time.

“You are funny. Do you know that?” I asked yet again.

The answer was faster and more confident this time, “yes” she smiled.

I hesitated now. Not sure if I should ask this but simultaneously knowing that I would anyway. “Jesus loves you…. Do you know that?”

I couldn’t have realistically expected anything else. That name wasn’t well known here. In fact, if she were to repeat this conversation to her mother, we may not be welcome to stay in that compound anymore. My mind knew to be careful with my timing, but I’m not sure exactly sure how much say my mind had in this conversation.

“Who?” was the word that went along with the puzzled look Juhudi gave me. I repeated it once more and was met with a pleasantly confused look paired with a slight head tilt.

The devastation was a bit unwarranted, I’ll admit, given my known location and situation, but I felt it all the same. I felt as though I carried the weight of the entire village that night, the entire country really. All the while knowing that this was just the tip of the iceberg of things that would break my heart in this world. And for just a moment, I had just the tiniest glimpse of the heartbreak that we inflict upon our father with the implementation of the free will that he gave us. Just a fraction of the weight that he carried when we placed that burden upon him. I longed to be able to repair here and now what had taken centuries to break. More than so many other times in my sometimes monotonous life did I desperately want his will to be done on earth as it is in heaven.

But there I sat, with a confused child on my lap and with a landslide of implications behind the utterance of a single name. I sighed and asked her one last question, “I love you. Do you know that?”

This time she hugged me once more with her “yes” and I hugged back just a little tighter than I had before. 

I think about Juhudi a lot. I wonder if our paths will ever cross again. I wonder if I’ll recognize her if they do. And I think I’ll always wonder if I said the right thing. I think I’ll always wonder if she’s ever been able to answer that 4^th question.