Severely disabled children have always frightened me. Not because they were disabled but because I was afraid of hurting them or causing further injury or death. I got nervous just feeding little children that I babysit. The thought of feeding a child who has trouble breathing because her body is so warped by scoliosis and years of neglect is terrifying.
The last two months on the race, we have had two special needs children – Monde in Zambia and Kistofo in Zimbabwe. Both of them were relatively high functioning. Monde had cerebral palsy so she was limited in her movements and her speech some but she still was able to walk and communicate with her caretakers. Kistofo was confined to a wheelchair and might have had some muscle atrophy. But he could engage and understand what was going on around him. They both are beautiful children who I had the privilege to share in a moment of time with.
When we arrived in Varna, Bulgaria I knew we would be working with special needs children every morning for the one week were here. I honestly didn’t know what to expect but I expected the worst and expected to be afraid and unsure of myself.
We arrived Monday morning. The smell was not as overpowering as our hosts had described. The children were all out on the patio enjoying the sunshine before the heat of the day.
We talked with the director of the home for a little while. I didn’t feel as nervous as I thought I had. I felt God already filling me with a supernatural love.
Long story short, 7 of the 10 kids currently in the home are from a former orphanage in Bulgaria called Mogilino. This was where all the “untreatable” unwanted, disabled children were sent. At one point there were 75 children there. And they would have one caretaker for all 75 at night. If you want to watch the documentary made by the BBC I will post the link at the end of this blog. It’s an hour and a half and just touched my heart so much. I saw a few of the children I work with. Dessi, a blind young woman, is in the film several times. She knows me by name now and I absolutely love just sitting and holding her hand.
The documentary is actually why the home we are visiting exists. The European Union disbanded all orphanages in Bulgaria and developed homes for the children. These homes have each child (both disabled and not) receiving much better care, hearty meals, proper medical care, etc.
The home we visit is five years old, so they have been working with these kids for a long time. Two of their children passed away last year. You can tell from their interactions that the staff love them. They share inside jokes with the children (in Bulgarian) that the children clearly adore.
I wish I could explain all that I’ve learned about these ten children in these four short days but I can’t. I wish I could post photos of their beautiful faces but it’s illegal to photograph them. So I’m going to tell you about one boy who has stolen my heart. His name is Toshko.
It wasn’t until our second day that I truly spent time with Toshko. Toshko is 17 years old. He did not grow up in Mogilino. He was dropped off at the children’s home 2 years ago by his family who no longer could care for him. His mother had died and the rear of his family has to work. I am told he cried for weeks. Especially for his older sister. His family tries to come see him once or twice a month. Toshko has cerebral palsy, and based on my very light reading on it, he has spastic cerebral palsy. This means he has very rigid muscles and limited motor skills. My sweet boy is confined to a bed and a stroller. He lays in bed most days, blinking his beautiful pale blue eyes at me. He has thick black hair and thick black eyebrows. His top teeth stick out so he never can quite close his mouth, thus he always appears to have a small smile. His arms are most often stiff and close to his side, but he can stretch them out and open and close his hands. His torso is about a foot and a few inches long and twisted at odd angles. His ribs jut out and his hips are out of alignment so his legs fall more to the right. He often enjoys laying more on his right side because I believe that is more comfortable for him. His legs are most always bent and stiff. Both his big toes are curled up from disuse. I can make the okay sign with my pointer finger and my thumb and completely surround his calf and his arms. My man is tiny but he is strong. The last two days, I have grabbed his hand and he closed his fingers around mine and we will sit like that for hours. When he experiences pain he cries out, squinting his eyes and squeezing my hand so hard I think my fingers could break. And I just pray that the pain he feels would pass to me, that I could save this not-so-little boy from his agony. I sometimes stare into his eyes and wonder if he really sees me. I wonder if maybe he sees He who is in me. I would be ok with that. That my eyes convey all the Father’s love and hope and joy that God has for this precious young man. See most of Toshko deformity comes simply from lack of physical therapy care. Had he been blessed with proper care from birth, he would most likely be able to walk with assistance, use his arms and legs, and not be confined to a bed/stroller all his life. But his muscles are so severely atrophied and stiff now, it would take years of work and available staff to correct his condition. My heart aches for him. He is just one of dozens of children like this in Bulgaria. Where lack of proper care and love kept children developmentally delayed.
This week, my thoughts on special needs children have shifted drastically. Not only do I now feel confident with caring for them, I feel called to work with them again in the future. Whether that is for a season or to potentially adopt a special needs child, only God knows now.
As for this moment, God give me strength to say goodbye tomorrow. My throat clogs with tears as I even type this out. I love Toshko as if he were my son, even though he’s not. And the fact that the only picture I will ever have of him is the one in my mind is so frustrating. I want to show off this beautiful boy to everyone I meet. I want to be able to look at it when I miss him. There are other children I will miss too. But he has stolen my heart. I honestly don’t know how I will get through tomorrow without laying Toshko back in the arms of Jesus where he is perfectly and completely loved. And know that one day my sweet, sweet boy will be running and jumping and dancing and singing in heaven with me.
To watch the documentary on Mogilino follow this link
https://www.youtube.com/watch?v=UQZ-ERQczj8
