Friday, January 7, 2011

A Life Less Ordinary

One thing is certain, our life is NOT normal. I'm not complaining. In fact, I happen to find a lot of humor in how different things are for us...most of the time.

I'm pretty sure that when Ella finally gets rid of the trach and we are able to take her into public more, there will be people shocked to see us with a child. I'll just tell them we've been keeping her in the little room under the stairs for the past three years.

I kid, of course.

Our family outings usually only consist of trips to the emergency room or a therapy session or maybe the occasional special needs function. We hardly ever do *normal* family things. For one, we have to be careful about who and what we expose Ella to and secondly, it's just easier to leave her at home with the nurse than to schlep all of her equipment and supplies with us for a one or two hour jaunt to a friend's house or dinner or whatever.

Recently I found myself out in the world with Ella in the backseat while we had some time in between doctors appointments. I decided it wasn't worth it to drive all the way home and unload her and all the stuff for just 30 minutes. So we went to Wal Mart.

I needed to get a few things so first off I had to figure out how to handle both a basket AND a stroller at the same time. Ella can't sit up in a shopping cart, so I took one of those small handled baskets and hung it on the arm of her stroller. The nice greeter wanted to help me and offered to put us in a large cart. I smiled and said, "That's okay. Thank you! She can't sit up." Too much information? Should I have stopped after "Thank you"? She looked embarassed. I smiled again and said, "It's fine!" to try and ease her discomfort. Oops. Moving on...

We began strolling through the aisles and encountered a variety of onlookers. A few stopped to tell Ella how beautiful she was. And a few just stared mercilessly at her without even looking up at me to offer an apologetic smile aferwards. I understand, she's different. We're not used to being outside of our "bubble" very often.

All in all it was a successful shopping venture. Ella loves to be wheeled around in the stroller looking at all of the people, lights and things. She even got to watch herself in the mirror (her favorite pasttime) while Mommy tried on a few hoodies. And I managed to handle both Ella and the items I purchased simultaneously without a hitch. Success!

Not your typical trip to the store with a nearly three year old though, right? No offense to all you parents of typical 2-1/2 year olds out there, but I've seen you trying to shop with toddlers and it's not pretty! Is it wrong for me to say that sometimes I'm thankful she isn't typical? That I like the fact that she stays where I put her and doesn't pitch fits or talk back to me? Well, I said it. There are some perks to having a disabled child in my opinion.

Also like the fact that I never had to get up in the middle of the night to feed a screaming baby. Since Ella is tube fed the feeding pump can take care of that for me while I sleep or do whatever else. Nice, huh?

And we have a "mute button" for our child. She can only make noise with the Passy Muir speaking/swallowing valve on her trach so if she does decide to pitch a fit, we can basically just turn her off. Like a TV.

And we don't have to worry about finding or paying babysitters. Yes, I complain about our nursing from time to time but I don't take for granted the fact that we are not paying out of our pocket to have someone watch her - a licensed nurse at that.

No, our life is definitely not ordinary but that's not to say it's bad. It's just different, and you have to look for the bright spots anywhere you can find them.


  1. Love this post. I think there are any number of perks to having a kid with special needs. At 14, Maddy still stays (pretty much) where I put her & since she doesn't speak, she never talks back to me. LOL Since she doesn't walk, I don't have to worry about her running away from home or eloping with her boyfriend in 4 short years. All I have to do is keep that tube feeding going, change diapers, and carry all 72 pounds of her to bed. LOL

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