Wednesday, August 24, 2011
How We Do It -- Part I in an ongoing series
I've been immersed in the world of disability for over sixteen years, and while I feel old and ugly and slightly bitter and very, very edgy, I also feel confident, empowered and intolerant of bullshit. When you've watched tens of thousands of seizures, maneuvered a seizing child down a hallway in your arms, changed an adolescent's dirty diaper in an airplane bathroom (said adolescent standing between your own legs as you sit on the toilet), slept with an adolescent every single night in fear of/anticipation of the seizure that will cause her to stop breathing -- well -- the list goes on and on, you've pretty much figured out how to do the daily life stuff and you might even be a bit RIGID about your routines.
Sophie is out of school until after Labor Day, so she's hanging out -- all day -- with me and the boys. It's tempting to just stay at home all day because that's easiest and probably most comfortable for Sophie. Aside from the big trips to the beach and museums, the trips that you can plan for, pack the wheelchair, the diaper bag, the sippy cup of juice, the handkerchiefs for drool, the little errands are the ones that often seem insurmountable. It's a pain to fold up Sophie's wheelchair for a trip to the grocery store or a quick trip into the bank or the dry cleaner or any of the myriad errands I run on any given day. A typical child can come along for the ride, either stay in the car or traipse in and out with me. Even when the boys were babies it wasn't that difficult to hoist them on my hip and do my thing.
I had to get out and do a bunch of errands today and literally begged Henry to go along with me and Sophie. I needed him to sit in the car with her while I ran in and out, so I bribed him with a promise of lunch and we headed off to the cooking and bakeware store that also has a cafe. I didn't pack Sophie's wheelchair because I didn't feel like it, and I knew that a handicapped parking space was right in front of the store so if I needed to, I could leave Sophie in the car with the window open.
Cause that's how we do it.
When we got to the store, I helped Sophie out and then walked awkwardly through it with her and Henry. While he held the things I picked out -- cake boxes, a bottle of hard cider for The Husband, cannoli shells and a pastry bag -- I held Sophie's arm and simultaneously kept her from sitting down on the floor as we waited in line to purchase our things. Sophie began to hum and moan -- loudly -- and Henry raised his eyebrows at me and said, under his breath , Soph, come on, shhhh and so did I. I let her sit on the floor for a minute, her long gangly body with legs crossed at my feet, and used my legs to shield her head from hitting the side of the check-out counter, deflecting, at least in my mind the stares of the other people in line. Then I signed my credit slip, handed the bag to Henry and helped Sophie up to standing and then out the door, all the while pretending that her constant hum was completely and utterly not affecting me and I was in fact oblivious to it.
When I put her in the car, in the seat behind the driver because she throws her head to the right and that way she won't hit it on the window, I felt relief. I straightened my back and rolled my neck and unclenched my hands. I also told Henry to go inside the cafe and decide what he wanted. He would then come out and I would go in and order our food while he sat in the car with Sophie. When lunch was ready, I would bring it out to the car and sit in the backseat with Sophie to feed her. As we eat our lunches from our handicapped spot, we watch the people coming and going into the cafe, sitting outside on the patio, kids rocking back on their chairs, chairs scraping on the concrete. When Sophie is finished and I've eaten, I'll go back in the front seat and we can go. And if Henry isn't with me, I'll go inside myself, leave Sophie in her seat with the windows open. She is visible through the plate glass window and I always hope that people will see her and assume she's old enough to be alone in the car.
That's the way we do it.
Later, when Sophie has been dropped back off at home with the babysitter, Henry goes out with me to finish our errands.
He asks me, Do you think our lives would be better if Sophie were normal?
I tell him that our lives would certainly be easier and then ramble into the musing about disability and unconditional love and how much we've learned and so on and so forth, until Henry interrupts me by saying that man, if Sophie were normal she'd probably hate me but at least she could drive.
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I once told my therapist that the issues that come with special needs kids aren't any harder to deal with than any kids, they're just different issues. (What I mean is, raising any child in this world is hard, scary work.) She just raised an eyebrow at me, not really believing me.ReplyDelete
I love Henry.ReplyDelete
Thank you for a peek inside your day. I get it.
Thank you for such beautiful writing. How would any of us be able to peek into life experiences that are unfamiliar to us, if people don't share their story? I believe such writing enlarges the circle of our humanity. Thanks so much.ReplyDelete
Thank you for sharing your reality, and inviting us in to join you. While we aren't able to help from here, by running errands or accompanying you in person, I believe that an unconditionally loving witness provides comfort, and you have a whole readership full of those here. I am thankful to be one of them. When you share all that you do, you bless me. I love your boys and their thoughts, and you and yours.ReplyDelete
First, I think you broke your oath to not disrespect yourself for the remainder of August,doing so in your very first line. Just saying.ReplyDelete
Second, I love you and your wisdom and your selfless sharing of your lives. I live through you often and glimpse towards my future with Zoey and hope I will do it with as much grace and your beauty.
Loving you and Ken and the series you guys have got going on.
All I can really say is AMEN!ReplyDelete
Damnit I feel exhausted just reading this Elizabeth. I have a question. When Sophie was moaning in line and everyone was 'not looking' what would you like them to do? I think that came across as edgy and it's NOT i swear, I really really want to know what is the best approach to show that one is simultaneously caring and accepting but also recognizes your privacy? That's probably ridiculous. There isn't one. But still. I always feel I am doing the wrong thing in those situations- looking, not looking, helping, not helping.ReplyDelete
I felt guilty the other day for glancing at a woman's son in a wheelchair. I smiled at her and I thought 'she probably thinks it's a pity smile and hates me for being so uninformed and barbaric and unable to see past disabilities etc '
What say you?
Maggie May, I too would love for Elizabeth to give her feelings on this question. There is a woman in our town has a son who is I think a lot like Sophie in outward behavior. What can those of us who have never had to think abotu "how we do it" with a trip to the store, best do in a siutation like this.ReplyDelete
Thank you, for sharing the blow by blow of your day. It seems important to put that information out into the world. You and Henry both know a certain brand of patience that not everyone is familiar with.ReplyDelete
Maggie May and Annie -- Thank you so much for your sensitivity, and given the fact that I'm as edgy as they come, I didn't find your question edgy at all! I think your response to a person like Sophie -- some eye contact, a smile -- is perfect, and others in my boat would probably agree that we KNOW when people are sympathetic and kind. If it makes you feel better, I am in the same sort of quandary as you when I see a disabled individual in public -- paralyzed momentarily on the "right" reaction, wanting to plunge right in with my own story (I know this!) and so forth. As a mother of four, you've endured the stares of people in stores when your baby screams or your toddler tantrums, etc. -- and I imagine you are "helped" if someone actually says something to you that's kind or even acknowledges the difficulty. Anyway, I appreciate that you would want to do the perfect thing -- I imagine your intent and soulfulness comes out of your pores!ReplyDelete
Wow. I can't even begin to say how much I appreciate you writing this post. My daughter (who is 6) has seizures similar to your Sophie. Not only do I appreciate your posting this, I can absolutely relate. My daughter is "non-ambulatory" and confined to her wheelchair. We don't have a lift/ramp in our van and so taking her anywhere requires us to lift her chair in and out of the van and transfer her to and from her carseat. This makes a quick run to the grocery store or anywhere a hassle. I can't wait until my oldest son is mature enough to sit in the car with the her ...ReplyDelete
As for other people's reactions to her (and her odd noises/yelling/crying/moaning), somedays it is easier to ignore the gawkers than others. Most of the time I can ignore it ... tho if an adult is open mouthed staring, I make a point to make eye contact with that person and most of the time I give them a smile even if I can. I honestly would rather have someone approach us with a question than just stare.
Anyway, thank you for posting this. My prayers always include Sophie.
I love this post and it's eerie familiarity, I like the exposure of the everyday, and may steal this idea shamelessly for the blog :DReplyDelete
well, you may FEEL edgy, but i think you LIVE with much grace. and i love what henry said...ReplyDelete
The strangest part of it all is this: my son's disabilities are completely different from Sophie's, but I understand everything you've said here.ReplyDelete
My other kids have asked occasionally, "Don't you think it would be better if Carter was a regular kid?" I always trip over the answer. I'm afraid to give voice to my real thoughts and feelings about that.
I feel frustrated when I read certain posts and there is just nothing to say. Nothing. I want to help you. I want to give you words that are meaningful but as far as I know, those words do not exist in your world.ReplyDelete
Having a special needs child changes your world in every way. You look back on the person you were before and concentrate hard but she is not there. Your morals, values and ethics even change. How can that be? Are these things not solid? Apparently they are fluid.
I now follow your wonderful and insightful blog on a regular basis. I accessed it through facebook. You are such an inspiration to me and I admire your strength. Your insight on life with Sophie is so moving. I appreciate the time you take to share your thoughts because it gives me strength to deal with my little day to day issues. My prayers are with your family.
Becky McGinnis King
I have learned much from your blog Elizabeth but today I felt and learned. You shared what for you, is a day in and day out ritual of life.ReplyDelete
So different from mine but what is common is being a mom and loving our children heart and soul.
Elizabeth! I , I ... I just do know what to say except that I am so sorry for always trying to run my mouth all over your blog and then some. I often forget exactly just how much a mother has to endure, not realizing that just because you're not screaming at me alternating looks that are hard to tell by your facial expression whether or not you aren't not lost in lost in the enjoyment of sharing yourself with the moment, OR that frozen lifeless look really means you are at your wits end and are just about to explode.
Releasing what can only be heard as anger as it is accompanied with expletives and taking the Lord's name in vain for which I have felt responsible for in the past because all too often my name is also mentioned as if it rolled off my very own tongue.
I am hoping you can forgive me for all I might have put you through. And I promise, if I could just have one more chance, I promise I will get it in right this time or else die trying
That's what used to grind me down the most. Even now it still does. I work mon-fri now and every other weekend I have Katie so she gets to go on my errands with me except she hates going on errands now. She only wants to do what she wants to do.ReplyDelete
The part I hate most with Katie is the crowds and lineups. I have to be so careful that she doesn't pull anybody's hair. She gets this look on her face and I can tell.
Feeling your pain.
Sometimes when a day seems particularly difficult, I like to imagine that my blog friends are with me, helping me get through the day emotionally. And on my easier days, I imagine myself reciprocating. That's how I do it. xoxoReplyDelete
Elizabeth, I keep reading this post, leaving, and coming back because i don't have the right words for you. Thank you for the words you give us, and for allowing us to witness the spectrum of your life. If only our thoughts could/would help you. Know that every time I come across a mermaid poem in my "research", I think of Sophie, you, and the whole family.ReplyDelete
I don't know where my comment went, is it there somewhere??ReplyDelete
I wrote how I don't know that there is another way of doing it, but you're doing all there is to do, and more.ReplyDelete
I absolutely love what Henry said. Amazing kid. And you? How lucky we all are to have you shed light, to offer a glimpse into your day. To remind us that a smile and a kind word is sometimes enough. Beautiful post.ReplyDelete
henry, henry, henry.ReplyDelete
the icing on all our cakes.
i love you elizabeth.
and all your children.
I love Henry's honesty...ReplyDelete
and I also want to echo what everyone else has said: thank you for sharing your life with us, for your brutally honest writing and loving heart. You've enriched the world this way. xoxo
I love the way you do it. Not because of the details or specifics, but because you've worked it out with love and compassion and an understanding of what your limits are without disregarding Henry's or Sophie's or anyone else's (in your family - screw anyone else's limits).ReplyDelete
And I love Henry's ability to see the complicated and the simple all in one. My heart melted.
this is writing that wraps around your chest and doesn't let go. it is aching and loving, both emotions entwined, and thank you for sharing how you do it. i believe your boys are profoundly more aware, more tender, more capable, more compassionate because of sophie, and the way you are with her. they follow your old soul lead. you are an extraordinary soul, dear elizabeth. a powerhouse of a mother. you get it done. and i wish somehow i could hold you up while you hold everyone else up.ReplyDelete
and is this part of that book you are writing? it definitely should be. such love.
I LOVE Henry. And I really loved this piece. I often wonder how people with disabilities "do it". I suspect that this series you're starting will be eye opening. You amaze me. And you deeply deserve a night out with the girls. Let me know.ReplyDelete
I love it when parents of special kids post about their average days like this one as no one has a clue how difficult it is to run a simple errand or eat out or do anything that everyone else takes for granted. I have 3 Sophie's and there are days when I'd rather shoot myself in the head than go through the errand torture. Sophie....one of these days I'm going to follow your lead and get the courage to drop to the floor in a store and hum....You have the right idea and the rest of us are doing it all wrong.ReplyDelete
The things I take for granted .... And the things I bitch and moan about .... It's embarrassing.ReplyDelete
Thank you for sharing. I need to know how it is.
Loved this post. The day to day stuff is so important.ReplyDelete
And as the parent of a kid with a different disability, I wanted to agree with the point that I can and do pick up on the vibes from other people that are supportive, as opposed to the pity/hostility/sideshow vibes. When a person sees someone with a disability as a whole human being, that vibe comes through.
That last comment by Henry is why we love the kid so much.ReplyDelete