I’m at a conference this week in Washington DC, so I’m reposting some old favorites from the beginning of my blog. I’ll be back with fresh content next week and – in the meantime – keep up with me on Instagram to see highlights of my trip.
This post originally appeared on my blog on June 7, 2013.
Parenting a disabled child takes all of the plans/hopes/dreams you had for the future and tosses them in a large blender then mixes them up and shreds them a bit before spitting everything back out on the other side leaving you a big mess to sort through. Kind of like a giant strawberry smoothie of life – the strawberries are still there and still taste good, but aren’t quite the same as they started.
Many of my hopes for the little man are things typically taken for granted – I hope he can speak; I hope he can sit up unassisted; I hope he can walk. The bigger stuff is still there – I hope he can fulfill his dreams, have a family, find a career, explore the world – but the day-to-day goals overshadow them.
And then of course is the overall hope – that the little man will live a full life regardless of limitations. That one is always in the background. Yes, I hope he can walk someday. But if he can’t? We can provide him with the most-awesome wheelchair available. Maybe one with flames and a rear spoiler. Yes, I hope he can speak someday. But we are working with ipad apps to provide him with a way to communicate with anyone he comes into contact with.
Don’t even get me started on my hope and dreams for my other family members. We just don’t have enough room to talk about all that today.
I am, by nature, a planner and an anxiety-ridden worrier. I worry that my daughter will one-day feel that her brother is a burden – regardless of how much she loves him. I worry that no one will be around to tell her that it is okay to feel that way, that it doesn’t mean she loves him any less and doesn’t mean she wouldn’t do everything in her power to help him. I worry about the other parents out there who feel like they can’t express their frustration, their desire for just a little bit of time alone, their need for a “normal” day, their jealously when the play group parents complain about colds and ear infections instead of therapists, feeding tubes, and an ever-growing list of medications.
I worry that no one has told those parents it is okay to be selfish sometimes. It took me a long time to feel comfortable talking about the challenges my family faces, to shake the horrible feeling of being judged if I spoke one ill word of parenting the child who is such a joy in my life. I worry that no one is there to help those parents when they need help. When they need someone to understand how difficult it is to find a babysitter and just come watch the kids for a couple of hours so they can go to the movies.
I worry that they will start to disconnect from their support systems. I worry that they will start out feeling like super-parents, but deflate when confronted with the burden that brings. I worry this will all be too much.
I worry that they will lose that hope for the future.