Today is the 11th anniversary of my daughter Cheyenne's death. She was 15 days old. The previous day we had been told by the nursing staff that her chances of survival had gone up from 50% to 75%. That day was the first day I took "off" from going to the NICU. Instead I went with my husband to his workplace and made up a birth announcement on the computer and sent out some email updates about how well my surviving two triplets were doing.
This is Cheyenne - taken on her 14th day of life - I celebrated each week with a new 3x5 card...
We brought the camcorder with us to the NICU that evening for the first time. When we showed up we were told to wait outside because a baby was coding. I knew it was one of mine. I asked and they confirmed that it was Cheyenne. My husband went off to use the phone to call his Mom. I waited outside the door. They came out and updated me. She'd dropped her heart rate and she'd been down for almost 20 minutes. I asked IF she survived what her quality of life would be like. They said she'd be severely brain damaged from the lack of oxygen. I asked if we could make the choice to discontinue efforts. They said we could. So when my husband came back we talked about it and had them discontinue efforts.
They took her off the vent and handed her to me in the blanket. She opened one eye and looked at me as if to say goodbye. We took turns holding her and touching her. Occasionally a doctor would pop into the "family room" to check and see if her heart was still beating. Even though she was (for all purposes) dead they had to wait till her heart quit beating before they called her time of death. And because they'd given her so much medication to try and get her heart beat to accelerate...it seemed like it took forever before she was finally gone. This is the only "movie" I have of her...and it's still somewhere on the original 8mm tape. We've never viewed it or put it to regular tape.
I grew up as the only girl in a family of boys. My Mom was quite masculine as well. I wanted a daughter to do all the girly things with. When I was pregnant I'd always say there were two girls for me and a boy for dad. Well, with Cheyenne my dreams for a daughter died as well. There would be noone for me to dress up and do their hair. Noone to take shopping. Noone to teach to bake. Noone to buy an ezbake oven for.
I don't care how many years pass - I have never been able to find any sense to the experience we faced. I'm not a better person because of it (stronger maybe but not better). I was a good person to begin with. In general, with grief you try to focus on the positive things you got from knowing the person. When your children live for such a short time and their whole life is painful...it's impossible to find that something positive to focus on.
My beliefs in God have changed. I no longer believe in a micro God. A macro God that created the earth and that has a general plan for our life...that idea I can still believe. But a micro God who knows and cares about everything in our life. That I can't believe. I can't believe a micro God with "all knowing and all power" would allow what happened to happen. And I can't set foot in a church after the "family" I belonged to for several years then decided they needed to blame me for my daughters' deaths. When bad things happen it can't be God's fault so it must be the fault of the person it happened to. I was told by church leadership that I must have had my priorities out of line and wanted my girls more than I wanted God and that's why He TOOK them. I was also told that if it weren't for my lack of faith that I'd still have all my babies (like the McCaughy's). Not a single person from that church sent a card or offered to help in any way. No food was brought. No rides were given to the hospital (I'd had a c-section and wasn't able to drive). And when I called my pastor after Cheyenne died (after losing two children in two weeks time) he asked if I absolutely NEEDED him because he was busy with preparing for his son's wedding. I told him no...I guess I didn't NEED him. Grrr.
So I'm sorry if I offend anyone by stating my beliefs. And please don't try to "fix" my beliefs. They won't change. Believing in a macro God is the best I can do...and that's my own PERSONAL belief. I no longer will attend a church full of hypocrites who kick people when they are down. It's easy to be on the outside looking in. It's easy to say trite things about God and heaven and angels. It's a whole other experience to hold your child in your arms as their heart quits beating. And until someone has experienced this, then I wish they'd keep their comments to themselves and just offer their support instead of well-intentioned words gone wrong. (No, God didn't NEED my daughters more than I did...I also don't believe He TOOK my daughters - I do believe He RECEIVED my daughters...I don't believe things happen for a reason...etc...etc).