Right now Joe is rushing around getting things packed and ready. We leave our vacation paradise today, the kids and their Mom flew out yesterday, and we leave this morning. When we got back from dropping them off at the airport, we were quiet. The ride home was eerily silent, having two kids in the back of a van is very different than having no kids at the back of the van. But we got back in good order, Joe dropped the ramp and I scooted out.
It was over the next few minutes that I really noticed how easy the girls had made this vacation for me. This hotel is pretty accessible but it has no automatic push doors anywhere. I didn't really notice because they just took over the responsibility of getting the doors open and me through them. There were other things they did to help with the wheelchair, with my comfort in the chair and with ensuring that I got to where I was going.
It was like this great relationship where they gave what they had and I gave what I had and we all got to enjoy just hanging around together. They knew that when I supervised them at the pool there were more rules than when their mother or Joe did. They knew that when we went to the craft and activity area we went a different way, the accessible way. It was just so easy.
I'm glad they are so comfortable around the wheelchair and they know what it means and what it doesn't mean in relationship to me. I'm glad they think wheelchairs are cool even though they understand and can spot an access barrier at 50 paces. Their natural ease around me, with all my differences, and the wheelchair was disarming for several of those who shared the resort with us.
Yesterday morning when we were going over to the craft area, a father of a young boy, remarked to me as we passed by after the girls had opened the doors for me, "Those are amazing kids." I think they are amazing kids of course so I couldn't disagree. What makes them amazing though, is the fact that they are wonderful, caring, smart, kids who are uniquely themselves. Their care of me, their relationship with me, isn't remarkable, I don't think. My wheelchair doesn't make me different in their eyes, it makes me Dave. Their relationship is with me, Dave, who uses a wheelchair. It's natural, not exceptional.
We need to stop giving angelic qualities to those who relate to, who are in relationships with, who parent, who marry, people with disabilities. The suggestion of angelic qualities in one assumes the burdensome nature of the other.
Even with all that said, the hotel room seemed awfully empty when we got back. I would have given anything just to feel, the breeze from those angel's wings.
I so agree about the not giving angelic qualities to people for being friends etc with disabled people.
ReplyDeleteMy husband married me before I got sick. People frequently tell me how lucky I am to have him, how he's so good when he takes care of me etc.
They never tell him how lucky he is to have me, because - as well as being a chronically sick wheelchair user - I earn money too, run the house (including the cleaner and carers), plan all the meals and do the food shopping online, run the refurbishment of our home etc etc.
People see him as a saint or martyr and me as his burden. :(
The probability of a lifetime where two able-bodied people marry, and nothing happens to either of them, is very low!
ReplyDeleteDoes this mean that one of them, as Jenni said, will end up the martyr in the family, and the other the burden?
There is a reason for 'for better or worse.' Maybe they should change it to 'for better AND worse.'
I thought I'd be the healthier one when my husband had a heart attack at 50 and a quadruple bypass. I'd already been disabled for eight years by that point, and was homeschooling our three children because I could do that, what with all that education and being stuck at home, and they were bright kids.
It was scary. I put the kids in school to have some hours every day to be available for my husband.
But husband recovered, the kids came out of school the next year, and we proceeded from there. 50, 100 years ago I would have been a widow these next 18 years. Instead, we are doing as well as we can, have married off the eldest, and I have published my first book.
Does my husband have angelic qualities? Yup. Sometimes. Just like most people.
Am I a burden? Part of the time, but more in the things I can't do than in taking care of me. Yet.
Do I contribute to the household? I think so.
Life.
You are lucky to have those little girls in your life just learning what life is like. It is a blessing for them to grow up knowing disability and other stuff happens, and life goes on, and it's not a curse. They are lucky they get to learn it the easy way, with a lot of love.
I'm sure they are also wise beyond their years. In the nicest possible way - and in knowledge of some of the bad ways. I hope my children are, too - they don't remember me not disabled.
Same with my son, hes always being told how 'amazing' he is because hes (forced to be) my carer, and I'm told I'm lucky and am seen as a burden on him despite it being me who's actually being burdened by our unfortunate situation. Whenever I try to fight back and explain to people that its not amazing or saintly for a grown ass son to help and care about the mother who birthed, raised and still supports him, people recoil and treat me like I'm bitter or unstable, and definitely 'ungrateful' which is the biggest sin for a disabled person apparently.
ReplyDeleteI just loved "the breeze of angel's wings." :) I know the empty space that exists when someone precious leaves.
ReplyDeleteOh, yes!!! There is nothing worse than people making comments that suggest that able-bodied people who choose to be friends with/ married to/ committed to/ caring for/ parenting people with disabilities are somehow "special" or "saintly"... My son uses a wheelchair, and I have been on the receiving end of the "Oh, you're a special person!" and "I don't know how you do it.." DO WHAT, exactly??! Parent my kid??? Be a mom??? My awesomeness has NOTHING to do with my son (I'm awesome, just because :p ) and being his mom is a privilege, not a chore, not a hardship, because HE happens to be a terrific kid (most of the time). There are also times I could cheerfully swat him, because he's a typical teen and can be SO annoying! His disability does not make him more wonderful or less wonderful...His personality, his attitude and his character are what make him a great kid.
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