Because it was time…

WhatMy younger daughter has End Stage Renal Failure.  In layman’s terms, this means that her kidneys don’t work — at all.  (I have links galore to kidney sites, if you scroll down and look to the right.)  She was 39 days old when she was diagnosed.  We cried and got angry and blamed ourselves.  Basically, we did all the normal stuff.  Then we got on with our lives…as well as a family can. 

To date, Kajsa has had three surgeries.  They were to place a feeding tube (gastrostomy or G-Tube) for her highly specialized nutritional needs, to place a dialysis catheter, which is basically a mechanical kidney, and to repair bilateral inguinal (groin) and umbilical (navel) hernias.  Kajsa gets a lot of meds ( including shots), has a bunch of doctors’ appointments, and receives nightly dialysis.  We expect her to be transplanted within the year. 

Other than that our lives are pretty much like anyone else’s.  Well, except for living in a converted chicken coop in rural Arizona with more animals than I care to go into, and zucchini coming and going.

But my point is that despite all the unexpected medical issues; we have a fairly normal family life.  We laugh and fight.  We do homework and go swimming.  We worry about the bills while dreaming about our future.  Chris works as a general contractor with his buddy Shaun, and is going to school for welding.  Maya takes the bus to school where she excels gracefully.  I take care of our baby and have been hired to work part time at a hair salon, as soon as all of my legal paperwork comes through.

Still, though, there are those who look at us as though we were specimens on a telethon…acquaintances who use that special voice they reserve for folks they don’t really know how to talk to – about stuff they wish they didn’t have to think about.

It is rather insulting and alienating…and yes, we know when you are doing it.  Like the waitress at Denny’s who always joked with us and flirted with the baby, until the day she felt Kajsa’s G-tube through her onsie.  Perhaps if we’d lied, she wouldn’t have started seating us in other servers’ stations. 

We don’t really care if you ask stupid questions, we certainly have.  Just talk to us like we’re still real people, you know?

So, for all the people who think we need to be "handled" with kid gloves, it is time…


Sometimes you just have to share…

a bit of the cuteness…

Tunes

Hangin_022_1

Hangin_021

 






and some of the silliness…

Hangin_018

Hangin_012Hangin_017



Just so that you can all see that we have truly
never lost…

Hangin_009



the sweetness.

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7 thoughts on “Because it was time…

  1. Hey, remember that question about what one word would describe you…? Well, I’m gonna add/change my answer to “eloquent.” Your writing so wonderfully shares exactly what you mean without extra stuff or added commentary, while still really being poinient. (I don’t know how to spell that word, but read it phonetically…)

    Anyway, cheers. I really apreciate your blog-o.

  2. Hey Ben!
    Thank you. “eloquent”, now that feels good on the old ego.
    Anyway, it’s really nice to see that you checked in. I need to stop by your blog again soon. I always enjoy seeing how you two are doing.

    Running2K’s,
    A hoot is exactly what they/we are. I enjoyed our conversation, too. Well, at least the enjoyable parts. Sometimes it takes odd situations to create positive results.

  3. Rowan, I love the honesty of this post. I’m of course sorry that people can be so ignorant, but then, I wonder what I’m ignorant about that I don’t realize…? Anyway, I LOVE the ‘silliness’ photos… too adorable! But where are some photos of you!?! Love you!

  4. My silliness photo is under the Studio 54 post.
    I think that’s about as goofy as I’m willing to subject the general public to.
    I’m glad you like the post.

    Don’t worry about your own ignorance (or lack therof). I think if your wondering your doing pretty O.K.
    After all ignorance does break down to ignore-ance.

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