By Juli McGowan Boit | Published: October 2, 2013
Written by Rachel Vreeman, Visitor and Friend of Living Room in July, 2013
Julia Shango Nyongesa
Born: August, 2001
Guest at Living Room since June 28, 2013
In the midst of my clinic visits this week, I traveled out to the Kimbilio Hospice which is run by my friend Juli, a nurse practitioner who operates a palliative care program of sorts called Living Room Ministries International. Out in rural Kenya, at least an hour’s drive from the next big town, Juli runs a hospice and care center that is not only a haven for dying patients but also the place where I can send my most broken or malnourished or neglected children. Kimbilio is where we send those in need of the constant, slow, loving care that is often more than families or orphanages or even the hospital can provide. Kimbilio means “refuge” in Kiswahili. I have seen this place of refuge bring many of our “hopeless” patients back to life.
When I am in the country, I try to offer Juli whatever help I can with the children she is caring for. This week, I saw a few children at the hospice, but Juli called me in particularly to see Julia, an 11-year-old with severe developmental disabilities for whom we were not sure what the next steps would be. I was concerned I would not be able to offer much, but it turned out that I think she may have a particular genetic condition, and we were able to think about some changes in medications and strategies for working with her that might be useful.
The work at Living Room epitomizes much of what we do in Kenya — facing broken systems and broken bodies and trying to do what we can to enter in, to come alongside, to care, to help. Juli wrote about what Julia teaches us on the Living Room Ministries International blog and I think sharing her words is the best I can do:
On so many levels, the work of Living Room involves entering into the suffering that fills not only the measureable brokenness of this big world but also the personal stories of the lives we get to touch, feed, and care for. These numbers represent hands held, tears wiped, diapers changed. There are moments we laugh with great joy and others filled with a grief that is difficult to bear. We do not always know the best way to respond to pain. We ask questions that lack answers but also celebrate simple things that in other settings might go unnoticed. We ask God for help. Many who visit Living Room refer to it, often to their surprise, as a place of hope, and while I believe this is wholly true, the hope experienced here involves both waiting and aching.
There is an 11 year-old girl named Julia who currently wanders the halls of Living Room. She has severe developmental disabilities mixed with the psychological trauma of being unwanted and “abnormal.” We brought her to Living Room, not because she is a typical hospice case and definitely not because we knew how to fix her brokenness. She came because she needed a safe place to rest. While the clinical team is making every effort to get her the physical and psychological treatment and help she requires, the way forward is unclear. For now, we have a caregiver assigned specifically to the protection and care of Julia 24 hours a day. In a moment of frustration, I recently asked the question, “What are we doing?” I was gently reminded—loving. We are learning another lesson from one created in the image of God about patience, sensitivity, and compassion. She does not tell her story with words or even symbols we know how to make sense of. In so many ways, she is thought to be a burden to society, but as Jean Vanier writes: “The poor are always prophetic. As true prophets always point out, they reveal God’s design. That is why we should take time to listen to them. And that means staying near them, because they speak quietly and infrequently; they are afraid to speak out, they lack confidence in themselves because they have been broken and oppressed. But if we listen to them, they will bring us back to the essential.” Please pray that we will listen, see with fresh eyes, and love Julia with unconditional love.
Julia is worth running for
This entry was posted in Blog. Bookmark the
permalink. or leave a trackback:
Trackback URL.
Category: Blog
Tags: No tags yet.
