I refuse to let Ellie's memory just slowly fade into the background. I refuse to let her joy, happiness and beauty slip away. I refuse to let the light, that IS Ellie, burn out.
Over the last few weeks, I have been spending some quality time on the IRS, Secretary of State and Attorney General websites. Exciting, I know. I am determined to start a non-profit in Ellie's name, no matter how difficult the government tries to make it. Slowly but surely we are making progress. It will be awhile before things are official. But we will get there.
Our organization will be called Ellie's Light. And our mission will be "to keep Ellie's light shining by supporting families with children in the PICU and those that have recently experienced the sudden loss of a child. We will do this by providing simple comforts to those in the hospital and by honoring the lives of their lost children. We will spread Ellie's Light by contributing to multiple organizations that encompass the enrichment of the lives of children and their families in Minnesota in a positive and joyful manner."
Basically, we want to provide comfort items to families suddenly admitted to the PICU with critically ill children. We also want to help families memorialize their lost child by providing memory boxes and supplies to create those last memories. The other part of what we want to do is more general. We want to be able to pick a different cause every year to support. For instance, if we want to donate to Toys for Tots one year, buy prom dresses for teens in need in the next or sponsor a scholarship the next year, we want to be able to do it.
Why? Why did we pick these things?
Well, because they make us happy. They would make Ellie happy. They will make other people happy. Our "cause of the year" will be whatever speaks to Dave and I that year. It might be something that reminds us of where Ellie would be at in her life if she were still here. It might just be a good cause that could use some extra help.
The other part, the hospital part, is based on our experience with Ellie. Let me first say, that overall, we were shown compassion and kindness during the time we spent fighting for Ellie. They pulled out all the stops to save our girl. Her body just wouldn't cooperate. That being said, there were definitely some things that needed some attention. When Dave and I were told to go lay down while they operated on Ellie on more time, we were given only a thin blanket to cover up with and hospital toothbrushes. The charge nurse kindly set up our beds and gave us what she could. But Dave and I had arrived at the hospital, not only emergently, but not expecting to be staying overnight. Ellie was WAY to sick to leave her- I never even considered it. We had only what we wore that day and what happened to be in the car. There was very little food available and what was, was junk. I was freezing.
Unfortunately, we were only at the hospital with Ellie for a short amount of time before we had to let her go. But it was obvious that the hospital needs someone to provide comforting items for families. Blankets, nice toothbrushes, decent soap, something to do besides stare at their child's monitor, nutritious snacks... So that's where that comes from....
Memory boxes/ Memory making... I hate to trash a fellow nurse. But the nurse that we had last... The nurse that was in charge of Ellie's death cares of not good, at all. I'm not sure if she'd never had a patient die and wasn't sure what to do or say or if she just had bad personality. But she was rude, un-accommodating and very lucky I didn't punch her. After the doctor's told us our Peanut wouldn't survive, I said I wanted to hold her. As a nurse, knowing that this would be the last time a mother held her baby, I would do whatever I could to make it comfortable, sweet, tender. This lady rolled her eyes, let out exhausted sighs and just generally seemed annoyed with me and my requests. Ellie was so swollen and stiff and had many tubes attached to her so holding her was nearly impossible. I had to ask several times for pillows. She was annoyed that I wanted Ellie as close to my face as I could get her. It's not like I could just pick her up! She was irritated with my request for Kleenex, for me and to wipe away the oozing from Ellie's face. She got snappy when I said I wanted the breathing tube removed.
Thankfully, having worked at Children's I knew what was available- what should be done when a child is dying and has died. In fact, I took a two-day bereavement class before I had Max. I knew I could have pictures taken by an organization called Now I Lay Me Down To Sleep. The nurse told me they didn't have anything like this. She told me they didn't have any way to take pictures. Fortunately a co-worker came down to check on me and found someone to do this for us. But the pictures weren't what they should be.
When I asked for handprints and footprints, I had to explain to her how to do them. When I asked for scissors to cut a lock of hair, she sighed and brought me a specimen bag to put her hair in. How am I ever going to get it out of a plastic bag? When I asked for stuff to give her a bath, she said, "well she's just going to keep bleeding." She actually said that! I said I didn't care. She brought us scratchy washcloths, ugly white hospital linen, that tore her fragile skin, shampoo and a comb. We washed the ultrasound gel out of her hair and tried to get the dried blood off her skin. There were many tubes that couldn't be removed so I wanted a diaper to put on her so we couldn't see the one in her groin. The nurse brought a size 4 diaper. Which is what she wore before she got sick. Now, she was about the size of Max. I said, I need a small adult diaper. She snapped, "I'm just trying to help you." I was not rude to her, I was not out of control or hysterical. I was just trying to make my last moments with my daughter the best I could...
I knew she was laying on a lot of blood so I didn't want to wash her back. I asked the nurse to do it. I told her I wanted Ellie placed on a baby blanket my mom brought after she was clean. The nurse said, "She's just going to bleed on it." We weren't able to dress Ellie in anything because of all the tubes and how swollen she was, I refused to leave her on a plain white bed, naked. So, we covered her with some hospital baby blankets. They looked like they had been washed a thousand times. Pathetic.
When it came time to leave we were given a cloth envelope with some grief information in it and it was placed in a plastic Children's bag. I walked into the hospital with our BABY, MY BABY and walked out with a freaking plastic bag. Pathetic. Oh yeah, and in that bag, a brochure for the photographer I was asking for. Pathetic.
So... we need to make memory boxes for parent's to carry out of the hospital. We need to supply appropriate handprint materials. We need to provide soft, decent towels & washcloths for parents to use when they give that last sacred bath. We need provide more to help comfort these parents in this horrifying moment.
I needed to get that out. Like I said, I hate to drag a fellow nurse through the mud, but what we experienced that night was unacceptable. Time to do something about it.
In the end, it's all about Ellie. It's about making sure her short life makes a big impact. It's about making sure our baby girl isn't forgotten. It's about making sure everyone sees just how bright Ellie's Light truly is.
It's about Ellie.