Most parents who have kids with disabilities 
usually seem to be fairly normal people.
Others, who don't have children with
disabilities, sometimes tell us what saints
we must be to do all the things we do.
Those of us who have been at this for
several years know we're not saints.
We know how long it took us to get to
this place. This place where we appear
to be capable and normal.
Each of us deals with the disability issue
in different ways. Some accept it as God's
way. Others accept it as a challenge to grow.
Some are angry. Some are sad. Most of us
bounce back and forth between.
We each cope in different ways too. Some
advocate. Some scream. Some hide behind
humor. Some silently accept. Some use their
spouses as whipping boards. (As well as any
other person who happens to be close.) It's a
mixed up, jumbled up mess whenever you try
to figure out what or how you are handling
this.
Most of us never actually figure it out. We just
continue to plod along, hurdling each new obstacle
as it arises. Never fully understanding exactly what
it is that drives us. Perhaps it's better that we don't
know. Sometimes I have moments of startling
clarity. The other night while talking to a bunch of
friends, someone said that it was okay to scream.
Most did their best jungle scream, but I couldn't.
The conversation had been about kids and Christmas.
I shared with this group that Christmas was the worst
for me because my youngest couldn't see all the lights.
Somehow her blindness always seems worse during
this season when the full impact of blindness and all it
entails really tears at my heart.
Suddenly I knew there is a silent, constant scream within
me. I do my best to muffle its vibrations. I keep busy.
I do what has to be done. I advocate. I write. I try to
keep the scream buried. Sometimes I think I fear that if
I do scream, I will never be able to stop.
Some people may say that I still haven't totally accepted my
child's disability. Maybe I haven't. Maybe I never will.
Maybe the scream is my way of not accepting. Who knows?
Many of you will understand what I am trying to convey here.
I'm sure many adults with disabilities also have the silent
scream within. It's caused by all the unfairness and frustration
that always tags along with disabilities. It's the force, the
adrenaline, the vibration that keeps us moving, whether it be in
mind or in body. It can be channeled into constructive areas or
it can lead straight to destruction. The person who feels it must
make the choice--whether to scream aloud or to continue to scream silently.