Saturday, October 8, 2011

Beads Of Courage.......A Dream Bead......The Butterfly Bead that took the Dream away.

It has taken me very long to confront this blog. I have alot to say and share but just lack the motivation to do so. I just keep storing my thoughts in my brain and surprisingly they are still intact just waiting to be released one day.

Im writing today because I plan on staying far away from the computer tomorrow. It will be the big day for me to stay busy ALL day. Tomorrow morning at 8:10 am 15 years ago I gave birth to my first and only child Jessi. I knew the years would fly but never imagined the course I was on or what awaited us just 13 and a half years later.

So here I am. I have arrived at today. Pressing on till tomorrow, and the next day and the next day so on and so forth.

Beads of Courage...........a wonderful program for children with cancer....Jessi treasured her beads....she has hundreds....each bead represents a procedure, blood given, blood taken, chemo, wheelchair rides,infections, hair loss, the list goes on. Interesting thing about Jessi and her beads. She was probably the only kid on the floor that didnt make necklaces with them and hang them on her IV pole or wear them. She kept them in a large ziploc bag. All separted by color and what each one stood for. She was very protective of her beads. I had thought about putting them on some nice leather strands and hanging them on my rearview mirror. That thought quickly faded for me cause most of the beads represent hard times in the hospital. If I had to pick one I liked or made me laugh it would be the wheelchair one. Jessi loved it cause she thought riding in the wheelchair was too cool. She had even tried to talk us into buying one for her for at home......
We have all her beads put away and I had thought about putting them in a shadow box but havent got there yet....not ready to look at them really yet
cause when I do I see cancer and I just hate it and what she had to go through to try and beat it.

The Dream Bead......Last year around September there was a big Beads Of Courage event at CHOA and Jess wanted to go to pick up her Dream Bead. Kids where able to request a bead that they wanted made for just them that no one else would ever have. Jessi's Dream Bead was a 2010 Maroone Chevy Camaro. Her bead wasn't ready at the event but she received it a few weeks later while in the hospital for treatment. We still have that bead. And it's still a Dream.

The Butterfly Bead.....I never knew of such a Bead. It's certainly not on the list of beads when a child is collecting them. It's the bead no one wants that's why no one knows about it. I was handed the butterfly bead by a nurse shortly after Jessi's passing. I read about the butterfly bead then. You only get the butterfly bead and learn about it when your child doesn't make it. It's the bead that takes your Dream away.

I feel so ripped off many times. We were suppose to be shopping for that Dream Car today. We told Jessi when she was in the hospital that next year when she turned 15 we would get her this car. Some will agree with that and some wont. However I've learned to not care what other people think or say at this point. But, when your child is faced with a terminal illness you do what you can to instill hope and give them something to fight for and look forward to.

As of today, I don't do birthdays or holidays....that may change one day but for right now that is how it is.

So my whole goal tomorrow is to keep busy.....I will be driving to do Lily's Run. Last year we attended it but Jessi was sick and I pushed her all over in a wheelchair and then she wound up at the hospital because of a fever. So no matter what October 9th will be a hard day. Always. And unfortunately it will keep coming just like the holidays. Nothing stops.

There will be no celebration, blowing of candles or unwrapping of gifts. It will just be another long day to endure.

A bead of courage.

A dream bead.

A butterfly bead that became a nightmare........