That’s really never good.
You see, I have one week left to make Jena’s wish come true and I just don’t know how I’m going to do that. Since she was a little girl, Jena was confident that there would be a cure for CF by the time she was 16.
On March 13, 2010 at 11:02pm, she would have turned 17.
That’s after 16.
Time ran out.
I just don’t know if I can live with letting her down again. I couldn’t save her from the disease that took her life. I couldn’t leave this earth with her either. And now I can’t make CF stand for Cure Found no matter how hard I try.
Her brother still fights daily to breathe and still there is no cure. Sometimes I think all the CF fund raising I do, and all the public speaking I do at CF events, and all the damn CF awareness I do is just in vain.
The researchers discovered the gene back in 1989. In 1991 when Eric was diagnosed, the doctors told me, “Just give us 10 years and CF will be a thing of the past.” Ha! I gave them way more and CF still smoldered the flame of one of God’s most magnificent lights.
I’m a failure as her mother.
Her birthday is next week and I don’t want to be anywhere near home. Her girlfriends will most likely drive themselves to her cemetery and sing her happy birthday and probably bring her balloons. They’ll laugh and cry and think about their special friend that changed them forever.
Our local church will have a beautiful mass said for her that day. Our family and friends will gather together and pray for her soul. Their hearts will be filled with love and sorrow.
I want to do something Jena-special. I want to do something she would think was cool. I want to do something that has purpose, meaning, and is full of love because that is where she is.
God gave me a moment’s grace and sent me an email:
I am a member of the Planning Committee for Shamrockin’ For A Cure 2010 – a huge party at Verizon Wireless Amphitheater coming up this March in Atlanta. For the cost of a night out you get dinner, drinks, live entertainment and the knowledge that you are contributing to the Cystic Fibrosis Foundation...
Save the date? Yeah, I think I can do that.
Drink? Hell yeah!
The emotional cost though is too high.
Still, Marc and I will be flying to Atlanta to be with wonderful friends that care so much, to do whatever they can, to make a difference in the lives of those battling cystic fibrosis. They have no other reason to be involved other than that their hearts were touched by our family and they wanted us to know that Jena’s life, Eric’s life, and my constant fight against CF is not in vain.
Call it coincidence, but I have long given up on that…I call it God’s grace intervening yet again.
I’m a mess, that’s nothing new. I cry, I breakdown, I curse that I’m still alive. Then I think of how hard Jena fought for each breath and how she smiled in extraordinary circumstances.
So where will I be at 11:02pm on Saturday, March 13, 2010?
In Atlanta, laughing with amazing friends, sharing a few tears, raising funds and awareness for CF but most of all, I’ll be toasting one of God’s greatest angels, my beautiful daughter…
I love you more and more each day.”