Go Blog Yourself

Listening to music. Charley and Spence are coloring and Piper and Axel are running around the house. The house is so full and so empty.

March 20th, 2008

“I’m in trouble again. I’m in trouble again. Ever since you left me baby you should see the shape I’m in.”
The BoDeans

Once again, I’m reminded that my life is very different than the life I knew. I woke up to an email notifying of the death of another little girl to neuroblastoma. Not actually neuroblastoma, but sepsis. Blood infection. It took my breath away. I’ve been following Madisyn’s journey and she was responding to an experimental treatment in Vermont. A treatment that we wanted for Tuesday. Tuesday didn’t live long enough to even give it a shot, so it’s irrelevant, but that voice that you wish you could choke off, kept thinking “Why Madisyn? Why not Tuesday?”
I know. It’s ugly. It’s not what I wanted to be thinking, but my daughter just died and I keep going back to the why’s. And now, my God, why Madisyn? She just went in for a routine check up. And then fever. And then sepsis. And then gone. Why Madisyn? Why Tuesday? Why do darling two year old girls get cancer and die?

Then the phone rings and it’s a friend telling me that our friend is in the hospital and could I go down and meet with them because their 11 year old daughter just died from pneumonia or sepsis but they are still not sure of details. What?
Am I really the person that people call when they hear a child has died? How can I be an expert on dealing with the death of your child? I knew I needed and wanted to go. I knew I wanted to hug them and tell them that nothing will make this better but that they are not alone. That there are people out there that have seen their children die and they will wrap you up in their words and their love and shared pain and they will carry you thru this nightmare and that you are not alone. You will survive, even if you feel like you don’t want to. I’m only 6 weeks ahead of where you are, but I am still standing and breathing and we can figure this out together. I’m not even sure what I said. I spent most of the time with Tuesday flooding my mind. It was good though. I know she was giving me the courage to be there.
I left the hospital and went to Fado’s to meet Charley and the kids for a St. Baldrick’s Day event. So cool. Look for one in your area and then go. Shave your head if it feels right or just have a beer and watch other people shave their heads and then look at all of these brave kids in the room that are fighting for their lives and then go give them all your money. Do it in Tuesday’s honor. We need you. These kids need you. Kids can’t raise the money on their own. They need you.
Our sweet friends, Bill and Jenn and their girls, met us at the St. Baldrick’s event and then we decided to take the kids bowling. There we were, eating and drinking and talking and enjoying being together while the kids bowled.

All that, and then bowling.

Goodbye sweet Madisyn.
Goodbye sweet Emmy
Tell Tuesday I love her.

Can someone tell me what the hell is going on?  Don’t we have 4 kids?  Where is Tuesday?  Did I really have a child die from cancer?  Cancer?!   Are you kidding me?  This doesn’t make any sense.  Why is Piper helping Charley make pancakes alone?  Tuesday should be there.  Her picture is everywhere.  I know I’m not making this up.  Honest.  We have four kids.  

I know I said I wanted to freeze the girls at 18 months.  I love that age.  But I didn’t mean it.  I wanted her to grow up and be a sassy mouthed 7 year old.  I wanted to fight with her over what she could and couldn’t wear to school.  I wanted to be mad at her, yet so relieved, when she wrecked her first car.  Just enough to scare her.  I wanted to be mad at her when she went over on her minutes by $489 dollars.  I know she would not have been any more perfect than the rest of my children, but now she is.  She never had the chance to grow up and let us down.  How hard will that be to live up to?  I can already hear it.  You loved Tuesday more.  

No.  

We love you more Because of Tuesday.

We all love them more because of Tuesday.

Stand Tall and Proud