Thoughts of Gianna, Growing in Love

 

When Gianna was in the hospital this summer, there was one day when Brad stayed with her while Isaac and I ran our summer program at church. That afternoon, our “fun” activity was a trip to the zoo. We ate lunch across from a dad and his son, who had some kind of cognitive disorder. This dad obviously loved his boy immensely. That afternoon I saw what I have to believe was a larger than normal number of disabled kids. Down Syndrome, missing limbs, wheel chairs. At the time, the thought was that due to Gianna’s loss of head control, her brain was being seriously affected. They told us that even a successful liver transplant would probably leave her “profoundly disabled”. We were looking at either death or a lifetime of medical issues. As I looked at all of the special-needs children at the zoo that day, I may have been the only parent there longing to have a child just like them.

I still think of that day when I see special kids out in public. Several weeks ago, a family with a little girl in a wheelchair was at the indoor playground. The girl’s aunt, who was watching the kids so her sister could do some shopping, so lovingly held the girl’s hand and stroked her hair. I wanted to blurt out, “what a beautiful girl! I would love to have one just like her, but my daughter died instead. It seems like you love her a lot. I’m so glad.” Instead I just smiled and engaged in normal parents-at-a-playground conversation.

What a gift such people are to us. They teach us love. I know parents who are raising disabled kids who do not hide the difficulty that this cross brings their families. But each parent I have talked to will sincerely describe the ways that their special child has stretched them in love and brought great love to the whole family. Mother Teresa once said, “I have found that when you love until it hurts, there is no longer hurt, only more love.” When we are forced to give of ourselves to the extreme, as in the case of parents who care for children with challenging medical issues, we grow in love.

Also, the disabled remind us that we are not the sum of what we can contribute to society, but human persons created in the image of a God who is Love. We live in an age where we can be tempted to view our worth in terms of our marketable skills, sales records or W2 forms. But we are all just one bad knock in the head away from not being able to even tie our own shoes. And truly, there is infinitely more distance between Einstein and God than between Einstein and someone in a “vegetative” state. This is not to instill fear in us but to liberate us from it. If we are defined by the love of God, then the thought of injury, sickness or even death can not bind us in fear.

May we allow such people to teach us such lessons, from conception to natural death.
 
Libby DuPont

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The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.