Before I get to the meat of this post, here's a little update on Kaelyn. She is going to have her tonsils removed on Feb 20. Not a fun procedure, but hopefully it will help her feel better and sleep better in the long run.
She also recently had an allergy panel done. Are you ready for the list?
Kaelyn is allergic to:
Egg white
Milk
Peanuts
Walnuts
Soy
Corn
Wheat
Any suggestions on what to feed this child? I am pretty overwhelmed. But a wonderful woman in our ward at church has just stopped by and left a huge box full of supplies and cookbooks for me to look over. Her son has many of these same food allergies. She mentioned how when her child was tested for these allergies she had no one to turn to for advice. So when she heard about Kaelyn's allergies she came right over and wanted to lend her knowledge and support. I haven't slept for a week worrying about what to feed my daughter who is allergic to all the good things under the sun, but now I have a resource and a new friend to help me through. She was definitely inspired to come today. I think I will actually be able to sleep tonight.
Now, to get to what I have been wanting to write about since Kaelyn's journey started but haven't had the words to explain.
A friend of mine, whose son, Boo also was diagnosed with Hepatoblastoma, posted this analogy written by a friend of hers whose daughter, Lindsey has hepatoblastoma (are you feeling a little dizzie with that explanation?). It struck home in mine and Wade's heart. We have been searching for a way to explain why we are not the same people anymore after this on going battle. I know that those of you who have not had cancer directly in your lives strive to understand, but it is not the same as living with it. This kindof explains why:
"Having childhood cancer invite itself into our home, our lives, and our precious little [Kaelyn] has been the best and the worst event of our lives. The childhood cancer experience can be best surmised by relating it to a tornado. It was the single most terrifying experience that our family has ever experienced.
Our personal tornado hit us without warning. No sirens announcing its coming and absolutely no chance to prepare. It was upon us in an instant and we were all being tossed about on the raging winds of uncertainty. We were all scared and quite literally face to face with the very real presence of death.
In an effort to comfort those that are currently being tossed about in those same winds of uncertainty at this very moment I could lie... I could tell you that my family survived unscathed. I could say that once the storm passed we embraced the sunny skies and that we've been living happily ever after. The problem is that anyone that has ever been swept up in this tumultuous tempest would most likely take offense to that and rightfully so. They would take offense because deep down they know the
truth...
When the tornado called childhood cancer hits your home and your family it quite literally destroys it. It rips off the roof, shatters the windows, and tears the entire structure from its foundation. It will leave in it's wake a bittersweet longing for the way things used to be, a euphoric sense of victory through faith for having survived, and a heartfelt desire to build anew on that old foundation of family and home with newfound insight into what is truly important. "
~Lindsey's papa, Jeff
http://www.lindseyann.net
I am not the same Angie that I was just four short years ago. I am changed, sometimes I think for the better, but sometimes I feel I have lost some innocent past that I long for. I know that I am more compassionate and have a more complete understanding of why our lives are so precious. I love my family unconditionally and I can say this truthfully with no hindrance. They are what matters. I know my faith is real. It has pulled me through the tornado and brought me and my family out the other side.
I want to quote Boo's mom, Trudi - "The most compelling part of it all is that those things that used to be important simply are NOT!!! I speak for myself, not Owen [Owen is her husband], when I tell you that I sit in a room with people ALL THE TIME listening to conversations about things that they believe to be great or things that they believe to be terrible and I spend the majority of the time saying to myself “I don’t care about that crap anymore.” I have bigger and better things to worry about and it is in that moment that I realize I’ll NEVER be the same."
Perfectly said Trudi. I feel the same way....
I know this is kindof a raw, emotional post, but this explains our life for the last four years and why we are not that same, and will never be the same.
~Angie
