Tuesday, January 18, 2011

Battle Scars

We have fought many battles since Ella Grace was born with the numerous illnesses, procedures and surgeries she's had. Her scars are obvious: the hole in her stomach that holds her feeding tube; the one in her neck that holds her trach; the marks on her jaw and tummy from past surgeries; and the frequent bruises and scarred tissue on her tiny arms from countless IV attempts.

Her little body has endured more before the age of three than most people will endure in a lifetime. But she is resilient. She bounces back and likely won't remember the things she has been through for which I am grateful.

As parents, though, we don't fare quite as well.

There is nothing that tears at your heart more than seeing your child suffer. The scars we have from these experiences lie much deeper than the skin. They are burned into our memories and tatooed across our hearts. So how do you cope?

Human beings in general are resilient creatures. We have been programmed with coping mechanisms to get us through tough circumstances. You've seen those amazing stories of survival on TV or maybe played out in a movie where people switch on some seemingly superhuman senses to get through a horrible situation. Well, it's not much different from what happens to us.

People want to know how I handle it all - Ella being sick and in the hospital all the time - and the truth is, not very well! At least not physically. The effects of the constant stress are very apparent to me when I look in the mirror. But we try and take it all in stride and move past each battle after it has ended, even though we know the next one is likely just around corner.

It's just like with anything else, the more you do it the easier it gets. The first time your child has surgery it's horrifying. But by the 7th or 8th time, not that I take it lightly, it becomes more routine. It's our normal. We get used to it, and that helps us to cope.

And I'm glad our scars aren't visible to the eye because I would never want Ella to see them.

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.