As I write this, I am in Kay St. Germaine, our rehabilitation center. This is where we have Olsen and he is fast asleep on the cough. He is stable enough though suffering with reflux and digestion problems. His pattern is to sleep a lot during the day, which keeps Norma and I up at night. He is still eating via the feeding tube, but his lungs are pretty clear and he seems to be a bit stronger. One little step at a time!
This rehab center is a hive of activity as we have physical therapy and school going on. You should see these adorable kids! Thanks to super work by Liz Lawne from Donegal, Ireland and Kristine Kronin from the US, our school is just wonderful. The girls have brought so much creativity to the classrooms and the kids and teachers enjoy it. On Sunday night we had a volcano and a beautiful mountain with a river and lake all in our kitchen. Liz was preparing the lesson plans for the kids and what a work of art! You know it is so beautiful to see these kids so, so happy and involved in the lessons. They are enthusiastic and eager to learn and their parents are so proud of their achievements.
Today I saw Suzanne and her aunt. Suzanne is the beautiful girl, 18 months old, that had meningitis and was in the same ward as Olsen. Her aunt told me that Suzanne used to be so active until one month ago when she got sick. One month ago she was walking and starting to talk and today she is blind, has no head/body control and is unable to give any visible responses. So, so sad. I asked how the parents were doing and the aunt told me that they cry non stop. The mother is afraid to even touch her and just can’t accept it. The father is the same. Life is tough eh?
Yesterday I saw Alexand, a little boy we have known since 2004, that is living with his grandmother. His mom had left him in a hospital and his granny took him back. He is probably 10-years-old by now and is a thin as a skeleton, despite the fact that we give the granny money for food. As he is very stiff, the granny can’t carry him easily for therapy. Truly I don’t know what to do. I have know him all these years, kissed and cuddled him umpteen times and I feel he is wasting away due to lack of care. I want to take him to our home in Kenscoff, Kay Christine and I believe he would improve in our care. But we are full. And I mean super full. So I have no idea if we will be able to do anything. No idea how I will feel in a few weeks when they tell me he has died because believe me, he is on a fast forward course to the next life. Mind you, I could be gone myself before him, but you see my point.
You see this is the hardship of our work – never being able to do enough. Always having to accept that kids (and adults) you love will die due to lack of care, lack of resources, lack of money. This is a hard reality.
Our reality is always full of extremes- the extreme joy of the kids receiving good care, the extreme sadness of those not getting it. Many people say to me “I could never do that, I would be too sad.” My friends, don’t for one minute think that we don’t feel. We feel it all! Every day we are bombarded.
Sometimes we store up the sadness/frustrations and then one day it all comes out! It would be so easy to let the darkness over come us. But you know we are inspired by the people we work with. Inspired by the courage and determination of these mothers. How about Mama Bijoux- herself with a semi hemiplegia on one side of her body so she has limited strength on that side. She comes to work on a motor bike carrying her severely handicapped daughter. I cringe at the thought. Sometimes the public transport refuses them because they don’t want to carry handicapped kids. You have no idea! And yet these mothers never give up. They stay so positive.
So we all look for the light and the light is there on the faces of those that we see everyday. Look at the pictures- these beautiful children are our teachers. We know life is not fair- but we have to keep trying to make it a little easier for those we meet.
Special Needs Director