Thursday, December 2, 2010

Living.





So over the holiday weekend I did a lot of soul searching. Guess most of it was done while drinking wine and decorating my entire house inside and out (by myself) for Christmas. I'm not a huge holiday decorating person. Honestly, I couldn't care less if we even had a tree up...but since I do have two children, it's not really all about me :) So I sucked it up and got into the attic, sorted through all of our holiday junk and decorated the stinkin house. (with a happy heart of course)
The little twinges of anger about Kendall not being "normal" always sneak up on me around the holidays. This one was a little harder than the last few because we're in a new ballgame now. I'm angry at myself for not celebrating her life more when we didn't think she had anything progressive. For not living in the moment and being thankful that things weren't worse. For complaining about her inability to sit unassisted, or hold her head up for a picture...it seems I was always wanting her to do more or work harder.

My mindset of finding Kendall equipment, or adapting things to work for her and enable her to enjoy life hasn't changed. I still plan to do all of those things. But the way I view life has changed. Between my mom's Cancer and Kendall's newly found Mitochondrial disease, I've been reminded that there are things in life way outside of our control. I choose to live my life happy. Worrying and complaining and seeking out an unattainable rainbow makes you miss the little things. Moments like Kendall grabbing a banana off her tray and taking it to her mouth. Or Kamden teaching himself a new song on guitar in his room where he thinks nobody can hear him. I want to pay more attention to those everyday things and live in the moment. I can do it. It will just require me to change the way I think about things in order to break old habits.

We had a family trip to the zoo...and loved it. We went to a friend's house for dinner...and Kendall got lots of attention. I've decided not to let this latest diagnosis define us. If anything, it has instilled in me a desire to do more as a family and spend more time enjoying Kendall. Just the way she is :)
I have a meeting today with the school district regarding Kendall's upcoming birthday and transistion out of ECI and into PPCD. Should be interesting. Oh, and a marathon this Sunday...should be even more interesting! Wish me luck!

6 comments:

Cjengo said...

Good for you!!! It's hard not to let tragic circumstances define our lives, and it says so much you won't allow that. Ps ~ I still have that stander we have to get together some time :)

Lorrie said...

I love you Jocie - you're amazing :)

Jennifer said...

Wonderful view Jocalyn. It is very difficult, isn't it? I've realized some of the same thing the past couple of weeks. This is the first Christmas that I'm excited about decorating and celebrating with Wade. I've missed all the "small" moments for 3 years now. I refuse to miss anymore! You're such a strong mama!

Anonymous said...

I stumbled on your blog through a friend of a friend of a friend. I thought Kendall was a special and beautiful girl the first time I stumbled on your site. I've been reading your entries for over a year but have never stopped to comment. I have to say today after reading your latest post, your baby girl is so very lucky to have such a beautiful and amazing person as her mama.

Terri said...

Jocalyn,
As I read your latest blog entry, I wanted to let you know how much I appreciate your honesty and insights. I know the things you write are not always easy, but the last entry made me think of a quote I read once..
"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

Your strength to keep going when "Overwhelming" is an understatement is an inspiration to all who know you. You are right that this latest information does NOT define who Kendall is.. she is still the sweet, funny, loving, stubborn, silly girl who eats playdoh, hates my pot/pan story box, and brightens your world. (Oh, and she brightens my world, too!)
You and Kendall are, and always have been in my prayers!
Love,
Terri

Landon Michael said...

I'm so sorry for everything your going through! I just posted something about been grinch. I understand the frustration! Thank you for your post, it makes me realize how many great things I'm missing! I hope you have a wonderful Christmas!