Wednesday, January 12, 2011


My mind has been on overload lately. I'm sure it's just the pressure of this week. The dread of this week. Knowing that on Saturday, we are celebrating the first birthday of our daughter that never reached ten months. This week has been one of the worst. The weight of it all... It pushes down from all directions. It's suffocating. I'm mad, angry and bitter. I don't understand.

I feel like the universe, or whatever, is picking on us. Yesterday, at the mall, Gymboree had sitting, front and center, a display of ladybug clothes. Very adorable ladybug clothes. Since June, I have been fantasizing about Ellie's 1st Birthday Ladybug party. If our life was like it should be, I would have been in Gymboree purchasing more socks, dresses, tights and headbands than one birthday girl could possibly wear in one day. I thought... really? Why did those have to be right there? Why couldn't that display have been sitting in the back of the store- or better yet, the back storage room?
Today, I got caught in traffic because of an accident near our house. Because of a large school bus in front of me, I wasn't able to see it until I was there. Of course, the police officer stopped me- not the view-blocking bus- while traffic from the opposite side came through. This give me the best possible view of two police cars, the police officer holding oxygen on a man's face (yes the mask oxygen like I held on Elle's face), the ambulance, firetruck and fire chief's truck, all with lights and sirens going. This couldn't have happened earlier, later, never, or on a different street? I'm probably just hypersensitive, but I feel like I should quit leaving the house.

I'm rambling today. I know this. But that's how my mind is lately...

My mind has been going places it hasn't been able to go yet. Last night at the said mall, we watched Max play in the play place. He played in the car Ellie had played in two days before she died. I could see her there. All of a sudden, it hit me. Did she pick up that germ here? Did I forget to wash her hands? What was so important at the mall that day that I needed to go there and expose her?
The guilt of not knowing about her spleen has been weighing especially heavy on my mind and heart. If we had known, we could have been doing something. We probably wouldn't be in this hell now. That's gets me thinking- WHY? WHY didn't we know.
That question is a bitch.
There isn't any other way to put it. There is no answer. There won't be an answer. At least not while I'm here. I like to think someday, in Heaven, I'll get my answer. But who knows....
Even if there was an answer- it wouldn't change anything. I don't think it would make me feel better. Up until now, I have been ok with having no answer to why. Now, it's not good enough for me. If we have to deal with this, I want to know why.
Did G-d not think I could take care of her? I could have. I would have. We would have. I would have been an excellent choice as a parent for a child with an immune impairment. I'm a freakin' hematology/ oncology nurse. I have connections! I know this stuff. This was actually something I could have handled!

Which brings me directly to my next totally disconnected and jumbled thought. The 8th floor at Children's Minneapolis. On the surface and to most outsiders, one of the worst places on earth. And no, I don't mean, the outdated tile or unusually small break room. I mean, the suffering that goes on up there. So many families have received awful, horrible, devastating news up there. Children have died after fighting long, hard fights. But, and this is a very important BUT, they did it, survived it, suffered it, alongside some of the most amazing people I have ever met.
The people that work up on the 8th floor are truly incredible. They care about their patients and their families- really care. They care about each other. They stand up for each other. Don't mess with them. They are fierce. I haven't worked there in over two years, but they have treated me like I have been there every day since. They sent cards, gifts, emails, messages, food. They came to Ellie's funeral, still in scrubs. Still on duty. They covered for each other so some people could come and show their support. Where else do you find that?!
The night Ellie was put on ECMO, I wandered up to the 8th floor. For a break, for familiar faces. It was almost like a little home away from home. I needed that- to those of you that were there that night- thank you for being there. One nurse, the amazing MaryJo, came downstairs to check on us after we were told there wasn't anything else they could do. She arranged for pictures to be taken. It gave me a lot of comfort that there were people on my side up there. A second family.
My out-of-control mind was thinking about what life would have been like knowing that Ellie had a dud spleen. It would have meant many, many ER trips, many tests, many IVs and several 48 hours stays in the hospital, awaiting blood culture results. Ellie, being an immuno-compromised patient, would have likely been up on the 8th floor. Well, even if that's not where the hospital wanted to put her- I would have not accepted any other place but the 8th floor. They know what they are doing up there. And I know I could have trusted them. Trusted them with my sick and fragile baby. I can say that because I know these people, these kind, caring and compassionate people. But Ellie wouldn't get the care that I speak of because her mother was one of them. But because that's how they take care of everybody's baby.

8th floor peeps~ You are awesome. I can't thank you enough for everything. Even before Ellie died, I thought you were all amazing. You taught me how to be a nurse and how to do one of the hardest jobs there is. You helped me see past the suffering and hurt up there and help them. How to see the amazing, miraculous things that happen, even in the darkness. You are selfless. You have walked families through unspeakable darkness and you are helping me do the same. I would have loved to be up there, locked in a room (yes even 8140) with Ellie, definitely preferable to life now... Just so you know, she would have had you all wrapped around her chubby fingers- that's just the way she was. But she would have loved you all just as much.
Man, I miss those little feet.


Tiffany said...

wow, i didn't know i shared my birthday with such an amazing little person. :)

Ellie, i hope you and Juju will be celebrating both of our birthdays, and having lots of fun. I don't plan to do much celebrating down here. :(

Tim said...

Speechless again, much like most evenings when I finish "The Broken Road". You and your entire family are in my thoughts as the weekend approaches. I've spent a week listening to people bitch and whine about a little ice and snow here in Atlanta, if they only knew your story. I wish I could tell them to go home and read your story and then get back to me about just how bad being stuck on the interstate for an hour really hour in the car with your kids drove you crazy, really read this and rethink just how bad your day really was.

I guess since I work in police work I am always looking for the "why". Often when I find "why", I get who and the crime is solved. I have delivered two babies in my career and have had three die in my arms. I used to ask "why", never got an answer. I asked the priest at my church, didn't get a answer I liked, quit going to church. Some times when I talk to victims or maybe just driving around I think I get clues to the "why".

I wish I could say something to make your weekend hurt less. Sometime this weekend when the snow is melting and the ice is becoming water, I will see a ladybug and I will think of Ellie and yes another clue....God Bless you and your family.

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