Monday, October 11, 2010

obviuosly you don't understand

I think the most useless thing anyone's ever said, in relation to Acorn and the level of stress that comes from juggling work, family life, and all of his various needs is, "well, everyone's stressed these days." The next statement is usually that I should try meditating, or that I shouldn't let stress get to me.

 
I assume the speaker is trying to find some common ground. But I don't think anyone who's not lived this life knows how really out of the box it is. And it's really not helpful to brush off my stress as if it's just an everyday sort of thing. To these people (because amazingly, there's been more than one in recent weeks), you think you know stress? Let me tell you about things that I have to stress over that I'm guessing you never do.  
  • You probably don't have upwards of 15 people a week in and out of your house.
  • You probably don't worry about whether or not these people wash their hands when they arrive, and what germs they've brought to share - in fact, you probably don't worry about germs at all, other than in the passing thought of, "if my kid gets that, I might have to take off work to run her to the pediatrician."
  • You've probably never had a child spend the night in the hospital for an illness, and certainly not for "just a cold." If you have had a child in the hospital for a routine illness it's been one or two days, not weeks, and it didn't involve a ventilator, ambulance ride, or IV antibiotics.
  • You probably don't have to deal with medicaid caseworkers (who are enough to drive a person insane, all by themselves).
  • You probably don't have to deal with a half dozen or more doctors and another 8 therapists and their schedules, plus trying to actually have some semblance of a normal life.
  • You've probably never had someone tell you it's your fault your kid doesn't eat like a normal kid.
  • You've probably never had to plan food for an entire weekend knowing that you can't actually get the food keeping your child alive at a grocery store.
  • You've probably never had 3 different doctors say that they can't do their thing until one of the others does theirs first, leaving you to duke it out and make one of them go first.
  • You've probably never had to take your toddler to a psychologist for their anxiety.
  • You've probably never woken up from a nightmare thinking something horrible had happened to your child. If you have, you probably walked down the hall and opened their bedroom door to peek, rather than calling the hospital at 2 in the morning, and then debating getting dressed and driving to the hospital (even though you had to be at work the next day) to actually see and touch your child to be sure the nurse wasn't lying to you.
  • You've probably never feared phone calls from your child's doctor or caregiver. And you've never had reason to, having never heard, "your child is fine now, but..." 
  • You've probably never heard a doctor say, "we had to give him some medication to keep his heart beating."
  • You've probably never performed CPR on your child.
  • You've probably never had to fire a caregiver for your child, knowing that it was better to fire them and call in sick to work than leave an obviously incapable person responsible for keeping your child breathing.
  • You've probably never wondered *IF* your child would breathe, eat, talk, walk, or play normally.
  • You've probably never required a doctor's letter to travel.
  • You've probably never told family you can't travel because you can't carry enough onto the plane, and the batteries keeping your child alive won't run long enough for the car ride.
  • You've probably never had to count hours of oxygen left to figure out if you can get home safely.
 
When you add all of those to the normal stresses of everyday life - getting to and from work, paying the bills, taking care of the house, taking care of "normal" kid things on top of  "special needs" things...I hope you can see where I could argue that I'm more stressed than the average person, and maybe cut me just a bit of slack.

You do that, and I'll cut you some slack on the less than helpful comments. Deal?

2 comments:

  1. This really really touched me. My youngest boy was a 27-weeker, and we have experienced a lot of the things on this list. Therapies, vents, hospitalizations, oxygen, the mickey button popping out when the nurse wasn't around, etc.....The worst was signing a DNR for him. Broke our hearts.
    The most common comment we got? "I don't know how you're doing this. You are so strong. You are amazing...." How are we doing this? We have to. You don't get to just check out. It's not allowed.
    Cheers to getting through it all with some semblance of sanity:) And yes, even just enjoying life at times! I'm cutting you some serious slack, mama!

    ReplyDelete
  2. This really really touched me. My youngest boy was a 27-weeker, and we have experienced a lot of the things on this list. Therapies, vents, hospitalizations, oxygen, the mickey button popping out when the nurse wasn't around, etc.....The worst was signing a DNR for him. Broke our hearts.
    The most common comment we got? "I don't know how you're doing this. You are so strong. You are amazing...." How are we doing this? We have to. You don't get to just check out. It's not allowed.
    Cheers to getting through it all with some semblance of sanity:) And yes, even just enjoying life at times! I'm cutting you some serious slack, mama!

    ReplyDelete