...And the Horizon EXPLODES!

Today, I went to Obras Sociales Hermano san Pedro to meet Lesley Pierce, whose name I had received from a fellow long-term volunteer at Nuestros Ahijados. OSHP is a hospital in Antigua that offers a variety of services and programs. They have a massive program serving children with severe and profound special needs. Almost every single child is wheelchair-bound, most have a significant degree of cognitive impairment, and many of them have complex medical diagnoses and needs (rare genetic disorders, seizures, heart conditions, etc). These children live at OSHP and spend their days there. Families are welcome to come visit, but out of the 20+ children living there, only two of them are visited once weekly or more.

Children come to OSHP from all over Guatemala, referred by hospitals and various non-profit organizations. As the largest provider of this type of residential care in Guatemala, they have a massive waiting list of children with special needs who aren't being safely cared for at home. These children remain on the waiting list until a child at OSHP dies or is moved to another ward (i.e., the adult ward). While on the waiting list, there are no services or monitoring in place to keep track of these children. Many children pass away before their name comes up on the list.

Additionally, there are no services whatsoever to teach families about their children, how to help them, and how to keep them safe during the two month-long breaks each year in which they return to their families. All services occur on the grounds of OSHP, directly between staff and children.

Many families are unconcerned and irresponsible in caring for these high-need children. Alcoholic mothers will return children after their break, twelve pounds lighter because they were too busy drinking. Teenage parents may leave their child alone for much of their time home, more interested in finding some sort of fun and trouble rather than caring for such a difficult child. Parents with multiple children may neglect the child with special needs because the other children are able and capable, and more 'valuable' that way.

Some families are heartbroken to see their children leave home and stay at OSHP, but want so badly for their child to receive the care they need. Single mothers who have been deserted by their husband and the father of their children must work to feed and clothe all of their children, and cannot stay home to care for the child with special needs as they'd like to. Without education, support, and assistance, they have no choice but to send their child away for almost the entire year. When the child comes home for break, they receive instructions regarding only what medications to give them at which time of day. Nothing more.

Lesley was a doctor in the UK. She came here nine years ago and simply never left. For those years, she has been at OSHP every morning, and now runs the Early Stimulation Programme. This is less formal of a program than it sounds, but a delight to watch. Children that would be hard to care for and educate even in the US are lined up in their wheelchairs, listening to music, watching bubbles blown for them, and taking turns playing with some of the many volunteers and the many educational toys that Lesley has brought to the center. They have a small core group of caregivers who are there consistently, and a number of volunteers that pass through while visiting Antigua. At OSHP, the care may not be perfect or ideal, but with people like Lesley constantly advocating for them, hugging, kissing, cuddling, playing, and talking to and with them, most are far better off than in the homes from which they came, and into which they will return for those two months each year.

I spent my morning at OSHP, sitting across from Lesley, surrounded by kids in wheelchairs. She had two little boys on her lap, I had one, and we each played with the other children that sidled up next to us.  She shared with me the history and circumstances of many of the children I met today, and provided me with a thorough understanding of what OSHP offers to the children and families, and how it's provided.

In turn, I told Lesley about my background, my experience, and what I have come here to do. I shared with her my desire to work directly with families and minimize this massive gap that seems to exist between families served and the organizations serving them. We discussed the need for education, for support, and for assistance with the resources some families need to access said education and support.

Having been here for nine years, Lesley had a tremendous amount of insight to share regarding the viability of such a plan, the specific services that would be most helpful, efficient ways to deliver them to families and prevent abuse of any material support offered to families, and how to get approval for said plan from the larger organizations such as OSHP. As a fluent Spanish speaker and medical professional, she is an incredible resource in countless ways.

Lesley was incredibly receptive to the desire I expressed to provide more family and community support. We discussed generalities, we discussed some specifics, and with every passing minute, I knew that I could not have imagined a better opportunity to put these supports into place. In partnering with OSHP, I gain access to lists of children who are in their homes with no access to any type of support, education, or care, and desperately need it, and to families who want so badly to learn about their child and how to care for them better but have no opportunities to do so. With independent funding, I can be in a position to really advocate for these children and families, skirting the bureaucracy that is a part of daily life when working in larger organizations serving a variety of needs and populations, and getting support to these children and families quickly and directly. With an incredibly experienced, dedicated person like Lesley as a resource, I can find ways to deliver services more efficiently, reduce the risk of implementing systems that may be abused or taken advantage of, and ensure that what I am offering is something that is truly needed.

I'm in the process of drafting up more details regarding what those supports will look like and will be running them by Lesley before I make them available and begin "officially" fundraising for this aspect of the project. I look forward to sharing these ideas and possibilities with everyone.

Thank you all so much for your continued interest and support! There is a lot going on at Casa Jackson as well- filming and recording voice-overs for the training video this week, as well as providing the usual care and therapeutic support to the kids. Sandra continues to get stronger and stronger, and I am pleased to report that I see more and more children being placed in different positions in their cribs and on the mat in the playroom when I arrive in the morning and afternoons. It thrills me to walk into a child's room and see blankets and pillows in the corner of their crib from when someone sat them up to look around during diaper changes.

Those little changes can make a big difference! It may seem like a small victory to have a child sitting instead of laying on their back for twenty minutes each morning, but those small changes add up.

In so many ways, I can finally say- the ball is officially rolling! :)