Saturday, April 9, 2011

in some ways this medically fragile parenting thing is nothing like regular parenting

I slept in the PICU with Acorn last night. As close as we are to being done...as long as it's been since he's been in-patient in a hospital (15 months)...I thought we were done with this sort of thing. We'd made it almost half his life without an admission.

I posted on twitter last night:  why is it that friends with normal kids freak when in hosp, but have no sympathy for us when we are?

I've been thinking about that a lot today. The thought was prompted by the response on a local parenting board to my post that we were in the hospital. Most of the responses were sort of generic - lots of hugs and "I'm sorry" sorts of statements. A few months back, someone else on the list had a similar sort of post...but they'd never actually had their child in the hospital before. They had people bringing them dinner for a week after they came home. There have been others, too, where the response was gushing, a combination of horror and empathy and insistence that things will be ok. 


Even on facebook, a few high school friends state that having a child in the hospital is the worst thing ever...but really, it's not. There are far worse things in life.

Talking with my husband, he points out that for us, this isn't the worst thing that's ever happened. We're very comfortable in the hospital, even more than a year since our last stay - we've practically lived there for months on end, we know how to operate all the monitors and equipment, we know enough to make nurses uncomfortable at times.

He suggests that maybe it would drive more sympathy if my statements were less matter of fact.

But this is our life. It is what it is, and I cannot pretend that it's something it's not.

It's no wonder, then, that so many families with children with special needs struggle, if so many of our neighbors, friends, and coworkers think that our lives aren't worth basic sympathy and courtesy because we're used to dealing with so many crazy things.

4 comments:

  1. I am so sorry that you were in the hospital again. I'm also sorry to hear that your struggle was not heard enough. I think you're right that people respond to the more emotional posts. A non-panicked status won't get as many empathetic responses because I think first, that people honestly don't have a clue what life is like in a family with special needs and, second, that many families don't want to think about it because they're frightened to face the possibility in their own family.

    But, the excuses don't mean that you don't deserve support and acknowledgment. So, I hope that you will continue sharing and requesting the support you need. We all need to support one another as families.

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  2. Ya know...I tell my students all the time that there really are worse things than death.

    That said, I feel the same thing about parenting. I know I could have it worse. I also know I could have it better. Neither way is easy. But, I think people get so used to us always having issues, that they feel like it's just "normal." Nothing is normal about your kid being in the hospital. And our fears are usually a bit more profound (if I do say so myself...)

    I am thinking of you....and Acorn. xoxo

    (PS it's me MommaHopeful!)

    ReplyDelete
  3. We have two Autistic kids (2 out of our six) and are expecting a baby in July with a neural tube defect. We're preparing ourselves for hospitals, surgeries, and many doctors appointments. I had an expectant dad tell me recently how what we're going through was his worst nightmare. But, having lost a baby 6 years ago, I think back at planning a baby's funeral and think, "No. This isn't the worst nightmare."

    It's not fun, but like you said, it's what you have to do right now, and you can do it. But it sure as hell isn't easy, and I know we moms need all the support we can get. I'll be keeping you all in my thoughts.

    Peace.

    ReplyDelete
  4. Ya know...I tell my students all the time that there really are worse things than death.

    That said, I feel the same thing about parenting. I know I could have it worse. I also know I could have it better. Neither way is easy. But, I think people get so used to us always having issues, that they feel like it's just "normal." Nothing is normal about your kid being in the hospital. And our fears are usually a bit more profound (if I do say so myself...)

    I am thinking of you....and Acorn. xoxo

    (PS it's me MommaHopeful!)

    ReplyDelete