Pat wrote this one.

Hope Haven Distributions - The "Client" -
It's not just about the kids....

Written by Pat

I have gotten to participate in a number of wheelchair distributions at the Hope Haven workshop here in Antigua. I never really know what I’m going to be doing at these distributions, but I know I want to be there. Sometimes I get to play “secretary,” others interpreter, other times there are children who need communication systems, and sometimes I find that my role is just to love on the people who come for chairs and their families. I do know, I never leave one of these distributions wondering why I have come. . .the people I meet here touch my heart and my life greatly.

Oliver

Oliver is a delightful eight year old boy who we were told was blind. After playing with him for a while, it seems apparent to us that he has some residual vision and is able to walk with assistance. He captured everyone’s hearts, especially those of a couple of therapists on the Rotary Club team. Dick and I will be following up with him—Dick to give him an appropriate walker, me to see if we can get his vision re-evaluated and to help him begin to use whatever vision he has. He is not in school, and I will try to work with him in this area, also.

Just “any chair” won’t do

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I am far from being competent in seating people in wheelchairs, but I am gradually becoming able to recognize an improper fit when I see one. The young woman above came in for her first wheelchair at age 31. Initially, she was seated in a cloth chair, and needed significant harness support to stay upright. When they finished her seating, I looked at her, and just knew something wasn’t right with the way she was sitting. Since I might recognize a problem, but still don’t really know what to do about it, I asked Dick to come over and take a look.

He immediately decided she was in the wrong chair and took her out to sit her on a folding chair. Imagine our surprise when she sat straight and sure without any support, only because the folding chair had a hard seat. Off Dick went to find another chair in the warehouse, and start the seating over from scratch. She left with a chair that fit her properly, and which she could even propel somewhat on her own.

I share this not to be critical of the first set of techs who seated her. They are good people who usually do good work. I share this, rather, to show just how complex this process is. Good enough is NOT good enough when it comes to a wheel chair. So many people who work with wheelchair services in Third World countries bring in “one size fits all” chairs, and in reality do harm to the people they seat. (See “Free Shower Chairs” on Youtube.) These chairs are the worst I’ve seen!

That’s why I believe it is so important to support ministries such as Bethel in Chimaltenango and Hope Haven here in Antigua. These ministries don’t just come down and do a “quick hit” distribution and move on. They know first hand that just giving someone any old wheelchair can do more harm than good, and refuse to give those living in poverty anything less than would be given to someone who needed mobility in the US. They treat people who cannot walk, even if they are in a Third World country, as first class citizens, and I love them for this.

These two groups have an on-going commitment to the people of Guatemala, and stay around to see the results of their work—both the good and bad. Hope Haven is continually reworking the design of their children’s chair to make it more comfortable, durable, and ergonomically correct. They have therapists and seating specialists at each distribution, and the staff of their shop is continually receiving in-service and on-the-job training from professionals in various fields. I am honored that they have invited me to work along-side them.

Edgar

This six year old who cannot walk manages to roll around to get himself where he wants to be. While the guys were working making adjustments on his new chair, he flipped over and grabbed the box of nuts and bolts and a wrench, and wanted to help them out! Once he was seated, I was able to give him a simple communication book which he instantly understood. It was such fun watching him “talk” to his mother with it. I think she was a thrilled as he was to have it!

Jennifer

I first met Jennifer when I went outside to see who was screaming as if being beaten to death. Jennifer is 14 and extremely aggressive at times, a real challenge to her single mother. Many folks from this team tried to “comfort” her in some way, only to make her more agitated. When I spoke with her mother, she apologized for the commotion, saying Jenny frequently hits, bites, and scratches her. She seemed ashamed that she could not “control” her daughter better.

I recognized at once that my ministry here was not to find a “behavior management approach” that would work with Jenny. Her mom basically had one, it just didn’t always work. While I might have been able to make some suggestions, I would not be spending enough time with her to do anything of real value, and would probably just make her mom feel even more inadequate.

So I visited with mom about some of my experiences teaching severely disabled children. I shared with her not my successes, but my struggles and frustrations. I told her I could only imagine how tough her life is caring for her daughter, and how much I respect the obvious love she has for this difficult girl.

As we talked, I could see the relief flow into her face. Someone understood—she was doing the best she could. She didn’t have to apologize for her daughter, but could talk about how challenging her life is caring for her, without fearing being judged. (Thank you, God, for all my frustrations and failures over the years. They reminded me not to play the “expert” but just listen.) She cried and talked and hugged me, and it was what I consider to be a “holy ground” moment in this week.

Dick and the therapists helping him had quite the challenge seating this young woman, but they managed to do their usually excellent job. Once she was finally in the chair, she calmed significantly. She even began working willingly with mom using the communication board I gave her.

Will her life change significantly because of what happened today? Maybe not. But I think her mother will always be able to know that someone understood her struggles and is praying for her.

Sonia’s son

I don’t know the name of the last little guy I want to share with you. Again, this time, I found myself mainly supporting and ministering to his mom. This was a tough one though. As many of the team members were “ooooh-ing” and “aaaahhh-ing” over her cute little boy, Mom stood aside, almost looking confused.

Sonia shared with me how she and her husband had waited fifteen years to become pregnant. In this time, they had adopted two children, but longed for one of their own. She also told me how their dreams died when they found out their child was disabled.

“Why,” she asked, “would God make me wait so long for a child and then give me ‘this?’” as she burst into tears. My heart stopped at this comment. I could see she wanted to love her son, but was really struggling to do so. At times like these, I regret that my Spanish is not more sophisticated. I couldn’t give her the pat answers we so often here, “It’s God’s will.” “God never gives you more than you can handle.”

I could see that the question here was deeper than her son’s disability. It penetrated down deep into her heart, where she was struggling to know if God loved her. How could I explain that the desire of her heart for a child had not been somehow twisted into a punishment?

And I found myself saying just that—that I could not explain God’s ways. That, while I don’t understand why God allows children to be born with disabilities, I know that He loves them—and their parents. That I know He has an eternal purpose for their lives, just as He does for ours, though we can’t always see it. I found myself saying that, rather than believing disabled children are a punishment from God, that I believe He gives them to those people He knows will have hearts big enough to love a child who is less than perfect. (Aren’t all of our children less than perfect.)

And the words rang hollow in my ears even as I said them, praying the whole time that I wouldn’t make life worst for this hurting lady. But, evidently they spoke to Sonia’s heart. She sobbed and sobbed and sobbed as she let out her hurt, disappointment, and sadness. I ached for her, wishing I could do more than just hold her as she cried. Talk about feeling useless and inadequate. . .

Once again, however, God proved to be more than adequate. As she was leaving Sonia hugged me, saying she would never forget what I had said. . .and how we had loved on her son as the most precious child in all the world.

Pat