Thursday, March 1, 2012

Wanting a Bigger World

Life can be pretty isolating when one has a disability. And by extension, mine has become that way because I have children with disabilities. While many disabling conditions have their own 'groups', the Autism Society for example, I have yet to find a group made up of children with Spina Bifida who are also profoundly Deaf, or children who are deafblind, have seizure disorder, ADHD, and feeding problems. And if one doesn't fit in a "group", other than the group called disability, options for socialization are even further reduced.

In some ways it's not bad to be isolated. My children and I don't have to endure the stares, the looks of disgust, the stepping aside as if what my children have is catching, the 'awwws' of pity, or the ignorant comments and questions (I don't mind non-ignorant comments or questions). There's a warm comfort to be found within the walls of our home where we are all just people, family members, valuable human beings. But every so often, the isolation is stifling and I long for a bigger world than that to be found in our personal 2400 square feet.

Last night was one of those times. I wouldn't say I was depressed, but I was a little bit sad. I miss the impulsive moments of jumping in the car to head to the beach boardwalk or the night out to try out a unique new restaurant. Nothing can be impulsive and spur of the moment anymore. We have to know if a place is wheelchair accessible, if there is kid friendly food available, or if there are medical facilities close by. We even have to decide if we think the other patrons at our outing will be accepting of our differences.

Please don't infer that anything I have said means I regret my decisions to build my family with children who have significant disabilities. Because there is absolutely no regret, and in fact, I want more children with disabilities. I just wish the world was more accommodating, and that we could all be a part of the whole and not just savor our slice of the pie.

To quell my sadness last night, and to feel once again the magnitude of the world, I stepped out onto our deck. It was dark and the stars were out. The only sounds were the sounds of neighbors going about their evening routines, the birds settling in for the night, and the barks of family pets wanting their dinner. I closed my eyes and imagined I was standing on the shore, hearing the waves crash and feeling the salty wind touch my cheek. I took a little 'trip' to the beach and it was wonderful. My sadness lifted for the moment...


MichiganMom said...

Thank you for this.
I adopted my medically fragile, developmentally disabled, technology dependent daughters with my eyes wide open. I too, have no regrets.
I did not know, though, that my isolation would become so complete as they grew to adulthood.
My girls are the source of my greatest joy. Together, we have created a warm, sheltering home. But we "fit" nowhere and going anywhere is nearly impossible.
Today I feel less alone, because there is another person on this vast and wonderful planet who understands.

Amy PAyne said...

Some people live their entire lives and never find the joy and peace you have. I do understand . I have actually lost friends because I have a child with a disability. they seem to forget why we were friends in the first place and now all they see is my child's chair and jittery legs. Its ok . I like my kid better ! It would be nice to go out to dinner and when I bring up the son they dont look lost . you know the look " oh what do I say " .
Glad you enjoyed your little get away . Ive been there before too :) . Tonight lets go again LOL

Ashley's Mom said...

MichiganMom, email me if you like. My email is listed on my blog page. I would love to hear more about your daughters!

Ashley's Mom said...

MichiganMom, email me if you like. My email is listed on my blog page. I would love to hear more about your daughters!