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Wednesday, August 27, 2008

Proof I am living in an alternative reality

This is a bit of a cheeky rant, because, well, frankly I am perplexed.

First of all, thank you to everyone for their good thoughts about Ellie and Dave. Like I have said in the past - they really do help. And Dave's finger is healing and Ellie seems to have pulled through the seizure intact. That's not the rant part.

Here goes - OK - how do I say this? First I wanted to do a quiz to ask people what they think it meant when I wrote that Dave could not lift Ellie? Because, surprisingly it's not obvious to all. I am sure parents of other quadriplegic children would be saying, "well dah!". But even people close to us don't seem to really understand the implications of one of us, Dave or I, being injured such that we can not pick up our 34 pound quad cp, seizure prone, dysphasic, refluxy, lovely, active, curious, loving, g-tube dependent child.

Why do I think it's not obvious to all? Well because of this suggestion I got from a friend after they chided me for taking on the teaching job (like I needed more chiding, come live in my brain for 2 seconds) about how to deal with all the stress:

"You should go away for a few days on your own to chill out."


I guess it's really hard to put yourself in someone else's shoes. I have always felt bad when I have been unable to do this well. And, of course, there are people living in situations that no matter how hard I try to imagine and empathize I will never truly understand what it's like for them. This must be an example of that. I never thought I was one of those people that is so hard to empathize with. Didn't realize that for some, our day to day normal was so beyond the pail. Maybe I should describe things better here on the blog? Maybe it doesn't matter? What do you think?


Bird said...

I'm so far over on your side that I can't imagine a situation where I wouldn't be picking up my child ALL THE TIME. Perhaps your friend meant later, when Dave is completely healed?

Penny L. Richards said...

I couldn't lift Jake for the week or so after I gave birth to his little sister--and we lived in a ridiculous (for us) condo with stairs EVERYWHERE. I had to ask my neighbor to carry Jake downstairs for me once, during that time--I just couldn't figure any other way to do it, and Peter was at work. Luckily, I have very nice neighbors and Jake's mostly cooperative about these things.

But yeah, I think a lot of folks don't really get how delicately balanced our lives can be, that we can't just disappear for R-and-R when we're stressed.

Eliza said...

I knew instantly what you meant from reading your blog, although I might not have understood it if something similar happened to an acquaintance in a similar scenario without your writing about it as someone I can relate to.

My most high-needs child had an NG-tube for a while and currently has a G-tube, and while my kid is independently mobile, this started at eight weeks of age, and I can't TELL you how many people suggested my husband and I "get away together for a weekend now that this is sorted out" (!!!). First of all, what is sorted out, second, don't you know people are afraid the tube will shift and the child will die, don't you know that I am afraid to let anyone else handle this because ONLY HE AND I WILL BE THAT CAREFUL???

My little companion-rant. I literally came here seconds after I posted about how I am tired of seeing people discipline their children for asking about mine--the more we talk about it, the more people might get it and be able to explain it to their kids is the way I see it :)

Rob at Kintropy said...

I got it, but can relate given our own experience with Hannah. It seems difficult for people to relate & comprehend, particularly if equipment and diagnoses are involved.

To help my dad and sister understand, Janette and I trained them how to suction Hannah's trach. That increased the understanding considerably (and also helped them get beyond Hannah's equipment and get to know her as a person).

Hope your family is mending well and that you all do get some breathing room soon.

Kathryn said...

Bird -you are too nice - my friend didn't mean later. They just totally missed the point that if Dave can't pick Ellie up he can't be left alone with her - at all. If she had a seizure of if the house were burning down or if she was choking on secretions - which happens all the time...

Penny - you get it! We may have to ask the neighbors to some and help us when I travel early in the morning to client offsites! UGH! I guess if you made it through so can I.

Rob - you are so lucky your family was willing to take an active role. I think Ellie's seizures have put everyone in my family way way off. It's like they are afraid to be alone with her! Makes me sad. I don't want to force their involvement but it makes me sad for Ellie that she isn't closer to any of them. She knows who her family is and is always happy to see them. But the communication thing is hard and none of them have tried to learn sign. Sorry - another rant. I am just really sad about it.

Good for you finding a way to de- stress it all and educate them so that now they have access Hannah. I know all the medical stuff is hard - but it's not rocket science or impossible! At least not with Ellie! Who is not even trached - which is much trickier than a g-tube!!!

Kathryn said...

Eliza - That's the other thing too - even if we could afford all the people in the world to help us - which we certainly can't - we would be trying to ramp up new people - and that is always scary - especially with the intricate little dance it is to get Ellie's meds right every day as well as the hurdle of trying to get to know her which is hard because she is non verbal! All of that equals no little vacations during the crisis for sure!!! iyiyiu! It's nice to know there are people out there who get it!

Kathryn said...

And Bird- sorry if I was harsh - but you are right too - it is hard not to be able to pick up your kid all the time whenever you want. But even harder if you can't do that and that prohibits you from caring for them at all.

Chrystie said...

You know what, Kathryn? I've come to the conclusion, as cynical as it may be, that often times, explanations are futile. I think people often see what they want to see. I think that empathy is raw and can hurt hearts, so it's easier to live in a world where *everyone* is able to find a weekend babysitter, allowing for "romantic weekends" away. When I'm really tired, it's just easier to "smile and nod". 'Course, that could only be perpetuating the problem, huh?! I just find that constant explaining can be exhausting.

Wow, I'm a bit of a downer today! If I have to end on a positive note, it's that through blogging, and the friendships of my "cyber friends" (like you!), I'm able to realize that there ARE a lot of people out there who "get it". We're NOT alone.

Hugs to you, my friend!

sarai said...

let them eat cake!!

Is Ellie supposed to lie in the same spot for the entire few days you are "chilling out"?

You describe things just fine. You do a great job, actually, doing this without making medical and logistical details bigger than Ellie. I'm sure those of us who do not care for a severely physically disabled child at home will never truly "get it", but believe me, we are still benefitting from getting to know her. Some people are just embarrassingly dense, no matter what.


Laura said...

I enjoy reading your blog and I think you do an excellent job as a parent for Ellie. You are both optimistic and realistic. I have never been a parent, much less a parent with a child with special needs, but I think anyone in your situation would experience stress and shouldn't be judged for it. I'm surprised that this individual actually thought you could get away for a few days. Keep your blog the way it is and don't worry about trying to please everyoen.