Monday Memory 3.27.06

“They’re wrong.”

“That’s all there is to it.”

“Things like this just don’t happen to me.”

Once the denial dialog cleared I realized that this was,
indeed, my new life. From now on, I was
the mother of a child with a serious chronic illness. Devastating news, yes, but this wouldn’t be a
problem for me. I have always been so
good at picking myself up, brushing off the dust and moving on to the next big
adventure. I figured that this would
just be another minor adjustment to make. Heck, simply having kids is a major life change. We’d just have more changes to make than we’d
originally planned for.

While still in the hospital, my husband and I decided that
we’d never let this change who we were – or how our tiny baby lived her
life. Kidney Failure was just a part of
her life. As far as we were concerned,
we’d never let it define her life…or ours. We’d never be the people with “the miracle baby” or “our little angel.”

So I spent months, no years, trying to pretend like frequent
hospitalizations, daily lab draws, and an overflowing mound of medical supplies
were just no big deal. I would only
allow myself to fully break down in tears at the doctor’s office. To friends and family I was strong, funny and
casual. Or so I thought. Looking back on it, I must have been horribly
transparent. I spent so much of my life pursuing
the illusion of a cavalier attitude toward Kajsa’s illness that the obsession
with a lack of obsession eventually became my life.

And then one day I woke up, and realized what I’d allowed to
happen. I’d become one of the invisible
ones – the parents of chronically ill children. There are thousands of us. Otherwise
why would every major city have its own Children’s Hospital? But aside from special interest pieces on the 11:00  news, how often do we hear
about sick kids – or the families who love them? At the market I routinely find contact
information for moms who home school, breastfeed, cloth diaper or simply want
to get their children together on Thursdays.

I wondered how much support there actually is available for parents
of children with chronic illness. So off
I went to my local bookseller, in hopes of locating a book about Pediatric
Kidney Failure. Knowing that this was an
unlikely subject, I was willing to read about anything vaguely related to our
situation, and simply adapt it to her condition. But I found nothing. Well, not exactly nothing. I found books for parents of children with
special needs. But they were for autism,
ADHD, and even anorexia. The closest I
found was one lone book about parenting children with Down Syndrome. “How could this be” I wondered to
myself. Furthermore, what am I going to

So I began visiting online chat rooms. I started a CaringBridge page and later moved
onto a blog. I began to find other
parents with whom I could relate. Our
one unifying factor seemed to be an original fear of being alone in uncharted
parental territory. Slowly, I realized
that there is nothing wrong with defining my relationship with Kajsa, in part,
by her illness. We all define our
motherhood by our children’s unique needs, be they organ failure, dyslexia or
even the need to get to cheerleading on time. And that’s just fine with me. I
do not need to deny who I am. To do so is
to dishonor not only my own needs, but those of my child.

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12 thoughts on “Monday Memory 3.27.06

  1. I think you’re right. Having an illness will, in some ways define who she is, and not all of them will be negative. Same for you. I’m a firm believer in taking the best out of every situation and running with it…

  2. Hey Rowan! That is good that you hooked up with the online community. It seems like that’s where most people are. I find a lot of help online too. That is great that you have created your own special blog!!! ((()))

  3. I think that is a wonderful memory. I always wondered about the kidney links on the side. I think my life has been redefined with the death of my sister. It is a totally different illness, but it still affected me and my family, so your memory really resonated with me.

    I hope that Kasja is doing well. She is so cute in her pictures.

  4. I agree as well. My son has crazy-horribly allergies & astham, and the times spent in teh ER, doc offices, testing– makes up closer. It’s not our whole relationship– but it seems to be a big part when problems come up. Not good, not bad– it is what it is. Makes me giggle, some, when people hear about it– and to us, it’s our normal. 🙂 Oh, we’ve been married since aug 2004. 🙂

  5. I agree as well. My son has crazy-horribly allergies & asthma, and the times spent in teh ER, doc offices, testing– makes up closer. It’s not our whole relationship– but it seems to be a big part when problems come up. Not good, not bad– it is what it is. Makes me giggle, some, when people hear about it– and to us, it’s our normal. 🙂 Oh, we’ve been married since aug 2004. 🙂

  6. You are such a strong confident person and I see that in your writing. Your daughter is lucky to have you in her corner, she has a wonderful role model. Her illness is not what defines her, it’s just one part of her and you are helping her to see that. That’s wonderful!

    My MM is up.

  7. Wow, can I tell you how much I admire you. You are right not to be defined by her illness but it is a factor that is real in your life. Good for you for reaching out to others. I will keep both of you in my prayers. Thanks for sharing this. My MM is up.

  8. You are a parent, she is a child. The chronic illness, while a huge part of her life isn’t who she is, it’s part but not all. First and foremost, she is a beautiful girl who is loved a lot. That’s what’s important.

    Great memory.

  9. This is one of the wonderful things about the internet–it has made getting in touch with others so much easier. You’ve helped a lot of people with this post.

  10. This was so well written. There was a time in my life I wore masks to cover the pain as well. Isn’t life so much more free when we choose to be real. I love it.

    I’m so proud of you. I’m so proud to know and I look forward to learning more.

    I ache for your pain. I wish there were no sick children. It’s one of those things you hear and makes you question so much.

    but I do believe our God is good.

    I am praying for you and your little one tonight. I’m praying for strength, grace, and somehow, joy in this journey you are all on.


    PS sorry for the rambles I’m all gushy and tired. LOL.. 🙂

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