Would you tell me, please, which way I ought to go from here …

April 30, 2014 at 2:18 PM 2 comments

I’d like to say I’m getting the hang of taking care of Eliana, but no. Like with any young child, things are constantly changing. But with her, it’s medications, new doctors, troubles with insurance … oh yeah, and some of that normal baby stuff like teething, pooping at the most inconvenient time, napping haphazardly.

Shira and I have been playing an Alice in Wonderland game on our tablets, a point and click adventure where you unlock doors and solve riddles from the White Rabbit’s house to the Red Queen’s castle.

I’m constantly amazed by the new tricks and things I learn along the way. And not only climbing a tree and flying a Da Vinci style one-man helicopter to the White Queen’s castle, but in real life too. We decided early on to share Eliana’s story, and we were overwhelmed by the well wishers and support we got from all over. Taking care all the time can still be isolating, though. She has such a rare disease (1 of about 250 ever diagnosed worldwide) and it’s unusual for a child as young as she is to be on dialysis. It seemed pointless to even look for peers, and I had already talked to one mom whose child had a kidney transplant and goes to the same doctor.

Once we were settled in at home, I had more time to shmooze with other moms. I started with Parent to Parent, an organization that matches families with another family with a similar experience. I joined a facebook group for tube feeders (or the parents thereof) because that’s a much more common treatment. Then I found some kidney disease and dialysis groups–there are tons on facebook and beyond, one of the most famous with the great name I Hate Dialysis.

Like Alice, I’m falling deeper and deeper down the rabbit hole and things are getting curiouser and curiouser. I joined a few facebook groups for people with kidney disease and those on dialysis, but because of the sensitive nature, many of the public groups are more like clearinghouses of information about kidneys and dialysis. I poked around on a few of the public groups and found a group for parents of kids with kidney disease. I said some magic words and *poof* I was ushered into a super-secret group for parents of kids with Eliana’s diagnosis and two other similar ones. It’s always tea time, and everyone is mad.

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The Clubhouse News The Clubhouse News, Mother’s Day Edition

2 Comments Add your own

  • 1. Bubbe  |  April 30, 2014 at 4:28 PM

    so glad that you found the group of kids with her diagnosis. it seems that everyone happens upon something good and then is willing to share. hope that it helps

    Reply
  • 2. Sandra Pittman  |  April 30, 2014 at 5:37 PM

    Always thinking of you Amy, Hank, Shira and Eliana. I’m so happy that you were able to find this super secret group of people on facebook to help support you on this journey.

    Reply

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