Wednesday, April 11, 2007

Balancing Act

I am constantly juggling.

And no, I'm not talking about my "roles" in life. They have all pretty much melded into one big hodgepodge that I'm comfortable with.

I am constantly juggling situations with Kaedra.

We recently received paperwork that qualifies Kaedra as disabled. For the past 2 1/2 years, and even now, we have been speaking that she is healed and whole and certainly not disabled. We needed that label, however, to get TEFRA - financial aid to pick up where our insurance ends. And we are thankful to get it. Blessed even. But not by the label.

And it's not just the label...

We strive in every way to make her life 'normal.' But it has a flip side. We want her to be able to enjoy church and co-op with other kids her age but we have to be very careful of germs. We want her to have fun - to run and play, swing and slide - but we have to make sure no one (including her) trips over her oxygen tubing and that she doesn't damage her exposed organs or her back. We are trying to teach her to fall asleep on her own but she can yank off her ventilator circuits or pulse ox probes and get our attention very quickly with her alarms. We try to discipline her but if she gets to crying hard enough we are on the verge of endangering her.

It's not just how we treat her that we have to juggle. It is also how we talk about her.

Most of the time, we never refer to Kaedra as anything but a typical toddler. We try not to dwell on what makes her different. We do it so much that I am always surprised when someone is uncomfortable around her. Recently we had a bad week with that. One of her Sunday School teachers was uncomfortable with oxygen being in their room, we had two cashiers who literally freaked out about her (she was just sitting in the cart each time) and a friend's daughter was grossed out by her trach.

On the other hand, I have noticed other moms trying to compare their kids to Kaedra. They compare their toddler who has a speech problem with Kaedra and what she has. For some reason, they want to show how hard they have it and it almost seems like they are trying to say they have it as bad as or worse than us. Personally, I don't like thinking of Motherhood as a competition. I would rather think of it as a team sport.

Recently I had a friend ask me why we thought we needed nursing. "Kaedra seems almost normal."

"Almost normal."

I guess that's the kicker. The "almost." There is a lot going on in that almost. We pray everyday for that one word to go away.

But in that 'almost' lies a trach, a gtube, lots of medical equipment, missing ribs, hemivertebrae, scoliosis, surgeries every six months, underdeveloped lungs, immunity issues and a mom and dad that would like to sleep through the night without thinking of life and death issues. THAT's why we'd like a nurse.

And yes, Kaedra is almost normal. And yes, she is doing great. And yes, we speak life over her every minute of every day. But she is still a little girl with serious issues.

And I'm her Mommy, trying to figure out how to balance it all.

3 comments:

Penless Thoughts said...

Great post, Kahri!

Heather said...

Awww sweetie...

You're such a great Mommy!!

I'm so sorry to read that there were problems with the SS class. :( I hope you were able to get that resolved!

I think I just might have to follow you to FAITH so that we end up at an event where I can meet Kaedy. LOL! She's such a sweetheart!

Luv Ya!!

An Ordinary Mom said...

Kahri, what a beautiful, thought-provoking, and enlightening post! Thanks for sharing this glimpse into your world. It is hard to balance things and I am glad we have God there to guide us.

And we are on the same team! You go girl!