Thursday, June 16, 2011

A Fine Line

One of the things we struggle with a lot is how to balance doing typical things with being cautious of Ella's medical issues. There seems to be a very fine line between being *normal* and being irresponsible when you have a medically fragile child.

Take going to the pool, for instance. I don't normally take Ella to the pool with me because, frankly, it's difficult to take Ella anywhere! But with pool season in full swing I found myself a little jealous of the other families playing together in the water and selfishly wanted to have Ella there too.

We do all of the usual things to get ready for the pool: put on her swimsuit, apply sunblock, get her a sun hat and glasses. But trach's don't mix well with water. Precautions are taken every day to simply bathe Ella, so putting her in a large body of water is risky since the trach tube leads directly to her lungs.

Aside from the fact that we need to be cautious of keeping the water below a certain level (and not dropping her of course!), we have to factor in the conditions we cannot control - like other people splashing and making waves. One little slip by anyone and we could have an emergency on our hands. So you have to ask yourself, is it really worth it?

I think it's like the saying that you've got to "live while you're alive". If you don't have any experiences at all, is that really living? So I'm trying to make a point to do more typical activities with Ella now that we have surrendered to the trach (meaning we've accepted that it's not going anywhere for a while), but it is definitely a struggle.

In a few months Ella will be going to school. Because of her medical conditions, we were given the option of receiving school services at home which was my original plan. But I know Ella will love school; she loves people, and it will be great for her development. Of course I'm worried sick about something happening while she is there or her picking up an illness, but I want her to live as normal a life as she can and experience things that a typical child would. Just don't expect to see me putting her on the school bus and waving goodbye!

1 comment:

  1. Hi
    My name is Jenna and i came across your site. Ella is an amazing, strong, determined and courageous fighter. She is a brave warrior, smilen champ and an inspirational hero. i was born with a rare life threatening disease, and love it when people sign my guestbook.


Go ahead, let me know what you think! Also feel free to ask questions or recommend a topic.