Thoughts of 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
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.
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.
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.