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Thursday, July 19, 2012

Thursday July 19th, 2012

Since Josh was a baby whenever he would crawl and now walk away from me, I always pictures him getting older.  Like being in Junior High, then High School and maybe married.  I always pictured him older and walking towards me.  Today Ella was walking away from me- holding her zebra stripped umbrella and going for a walk.  I realized that I hadn't had these same mental images about Ella.  I think it's more that I haven't let myself.  Too afraid that it might not happen.
Okay, having a bit of doubt today, but it is really hard to be positive every single day.  Please don't misunderstand, I know there are so many "Ups" to this journey, but sometimes I just need a down day. A day where I don't have to reassure someone that she is doing 'Fine" and where I can just be sad that my daughter and my family have to deal with cancer.

Only 100days of chemo left.


Saturday, July 14, 2012

Saturday July 14th, 2012

Today I was humbled and honored to speak in front of 160 woman. I was able to tell Ella's story, but from my prospective.  The cool thing is that is was to a group of woman who all "got it".  I know my friends and family understand, and God knows I love you all for it! But, to have the opportunity to be encouraging to other parents- to in some small way say "Maybe this is why? So we could reach out to other moms?" and make a little difference- well, it was a really great feeling.

I want to share a part of what I said today.  When I was writing my speech, I was having a hard time thinking that what I could say that would be helpful.  So, I asked my family what they would say if they were in my shoes.  Here are their answers.

Josh-"You have to protect her. If they ask if she is a boy or a girl, you have to stand up for her. Also, she will get more toys than you and you have to try not to be jealous or mad."

Ella-"It sucks, it stinks and I hate it, but you have to take your medicine so you can kick it's butt."  She knows she is not allowed to say sucks or hate, but I think she knew she could get away with it for this!

Steve- "Ask for help before you need it. Remember this isn't about you, it's about protecting your family."

My friend Katie- "Forgive your friends. The may not know what to do or say and they may feel guilty that their child is healthy."

My advice was this.

Allow yourself to:
Not be perfect.
Be mad, happy, sad and cry when you need to.
Ask for help
Know who your friends are, and they may be new ones.
Find your faith.  These people will hold you up when you don't have the strength and pray for you when you don't know what to say anymore.
Tell your family you love them and appreciate them.  Do this often so that even when your time is spent with your sick child, they all know they are important to you.
Write it down. See this blog for an example:-)  No one can ever really understand how you feel except you- so let it out and write it down.
Give your child control of something. They have no control over anything in this journey, so let them control what they wear, or how they take their medicine.  We still have to smell Ella's feet every time she takes her medication, and that's okay.

I left them all with this quote, which has become one of my favorites since Ella was diagnosed. I think it could be said for every woman in that room.

"You never know how strong you are until being strong is the only choice you have."  ~unknown

Now for a little Kelly Clarkson who is playing in my mental MP3 player right now. Good Night and thank you all for your encouraging words.

105 days left. Time to start counting down.


Friday, July 13, 2012


This Saturday I will be sharing our families story with out 150-200 woman at a charity event hosted my Mr. and Mrs. Charles Tillman for mothers/caregivers of seriously ill children. I am  humbled and honored to share our story, but I know we are the lucky ones.  Part of what makes us lucky is our awesome friends and family who have prayed for us, held us up, and just read this blog- so THANK YOU!
There is no way Steve and I could ever repay you all for helping us through this journey.

Thank you.
Steve, Katie, Josh and Ella

Monday, July 9, 2012

Summer Fun

Ella got to hang out with Kennedy, another ALL patient this weekend and enjoy some water time!

Thought I would share!