“And their Families”

Yesterday Light the Way Vent Kid’s Camp came to campus. Watching the young people in their wheelchairs with their family and support system (ventilator) in tow, you get a little idea of what challenges they face in life.  As you look past that child in the wheelchair you see other children, able bodied young people who oft times get overlooked or taken for granted. These are the siblings of a seriously ill child; even though fully capable of leading a normal life, they may never get the chance to know normal in the way you and I do.

Today, I had the chance to sit down and talk with the 14 year old sister of a 10 year old boy who has been on a ventilator since birth. I asked her what it was like living in a home with a brother whose illness demanded so much attention.  Here is what she said:

“It isn’t always easy but I feel honored. Really, I feel that God has chosen me to be the one that can make a difference, not only in my brother’s life, but also in the lives of other’s suffering from an illness.” She agreed that she had to grow up a lot quicker than most 14 year olds. She shook her head slowly and said, “Some days when I am at school, I watch the other girls and boys, so caught up in their own little world and I find myself feeling sorry for them, they really don’t get it. I love being with these children at camp. I love watching them grow up, knowing that I had a hand in it.”  I asked her if she ever felt embarrassed. She said, “When my brother had to be in the hospital for 3 months, I had to live out of a suitcase in different family members and friends homes. I was embarrassed that I had to be a burden to them.”  Then she said, “Have I ever been ashamed or embarrassed to be the sister of a brother on a ventilator, a brother who has never been able to walk or speak my name?” Without hesitation she said, “No! He’s my brother.”

I knew she wasn’t to be pitied, but admired, a strong willed young lady with the determination to help “Light the Way” for her brother and others like him.

It is a fact that we “Serve seriously ill children… but it is our mission to serve them … and their families.”