Oct 23, 2018
Thoughts from Guatemala
Every year when I come back to Guatemala, I am touched by the many ways God is using this staff and community to touch lives and how, collectively, we are learning from each other and growing in new ways. A great example of this was seen while working with JM. He is a young man that we were asked to make some equipment for because his mom had no way to keep him safe when he was upset. MJ is 8 and diagnosed with West Syndrome. He has frequent seizures, is unable to walk or talk, and has a sensory system that is frequently overloaded, resulting in agitation and, often, head banging. The therapy team at ASELSI (CAF) has built a great relationship with this family, earning their trust and respect. The staff has modeled to us how to look at the full person, not just the physical needs. They empathize with and understand the struggles of this family but can see and share in the love they have for this boy and see his potential. JM is making slow but steady physical progress. He can now sit independently and can calmly engage in a brief activity with his hands. They have discovered some things, such as music and rocking, that will briefly help him calm down when upset.
I can only imagine how hard it must be to see your son in distress so often to the point he bangs his head uncontrollably. The burden of knowing the only place he is most calm is in mom’s arms with his face close to hers, seeking her undivided attention, is difficult. Every time he has a seizure, he loses his appetite and becomes weaker. He can’t communicate his pains or needs as we do. How do you meet his needs with all life’s daily demands in a place that has little support and respect for those with a disability? The staff has shown this family the love God has for all individuals. That we are created for a unique purpose and are each valued is clearly demonstrated to all around him. This family has shown us what faith and resilience look like as they continue to persevere through the struggles. This is beautifully displayed by the way they advocate and seek out ways to meet their son’s needs, so he can reach his full potential. All this is being done despite the barriers and beliefs surrounding a person with a disability in a culture that is not very accepting and in an environment that does not make it easy to care for someone with special needs.
Together, we were able to take the information the family and CAF staff gave us to create a chair that would meet some of JM’s sensory needs. The goal was to create a safe place JM could be outside mom’s arms where he could enjoy and engage in his environment but that would keep him safe. It was neat to problem solve with other peers to come up with a plan and then watch the University of Texas Medical branch occupational and physical therapy students take that plan for a chair and bring it to life. It brought joy to see him sit calmly for nearly 25 minutes in his new chair while engaging some with his environment and to watch his mom’s face show hope and relief at the same time. We know this is just a small part of this family’s ongoing journey, but we are thankful we could be blessed by this boy that brought us together. He has taught us what we can do as a community and what really matters in life, all without speaking a word!