Sunday, February 13, 2011
Anger, Meet Heartbreak.
Today we received an envelope in the mail.
This has been pretty normal lately. Leila was loved by so many people, literally in the thousands, from all over the world. She was like the world's tiniest celebrity.
At least that's how I think of her. My sweet little diva. Always fighting and kicking. Refusing to give up until she just couldn't go anymore.
We have been receiving a lot of mail lately. Probably about 3 cards or letters a day from people who were touched by Leila and wanted to share their story with us about how she changed their lives, or just to send us a card offering their prayers, and we still receive the occasional hat too, but I will explain the hats later.
Today in the mail we received three envelopes (not from bills or ads or anything, but honest to goodness mail, ya know?). One was a card from a church telling us about a contribution made in Leila's name. Another was a sympathy card from a close relative. And the third made Donovan's and my heart jump into our throats and our stomachs sink into our toes.
Sounds pretty dramatic, huh?
That's how it felt.
Like wanting something so badly but knowing that having it would bring you heartache all at the same time.
This is kind of like that.
When Leila passed away, a very nice lady came into the sterile little room they had put us in while we "grieved", and offered to take pictures of us with Leila after they had cleaned all the tape and tubes and masks off of her.
At first I liked this idea. I thought it would be great to hold her again, and I had heard about Now I Lay Me Down To Sleep and the work that they do. As Donovan and I tried to wrestle the strength to go face her lifeless body and hold her while someone we didn't know took pictures, we just snapped. It felt wrong and morbid and neither one of us could work up the courage. I guess we just weren't ready and the thought of it made it all too real. Stifling so.
Donovan said that he didn't want to ruin his last memory of her: laying on her Mommy's chest where she belonged. It was a beautiful and sacred moment to him.
I waited a long time, struggling with the decision to stay in the room with him, the room that was too quiet, but so loud. The room that was considerably roomy for two people to sit alone in, but made me feel claustrophobic. That was the room in which the doctor had told me three days earlier that she probably wouldn't make it, but that he had such high hopes for her. That was the room where we sat right before she started getting better, which was right before the very end. That room was not a place for happy news. That room was a bad omen, and it was suffocating me.
I realized that I didn't believe it. I truly couldn't accept that she was really gone. And it was probably selfish of me, but I wanted to walk back in there and see that they had hooked her back up to the machines that were keeping her alive, and that she hadn't really left me... Not yet.
So I left Donovan and walked down that hall. I had probably walked down that hall at least 50 or 60 times in the last 12 days. Maybe more than that. Every single time I walked down that hall, I stopped at the counter to drop off my coat, stopped at the sink, put a pile of soap in my hand, and scrubbed up for a full minute. Sometimes I would just barely brush against the wall when grabbing a paper towel, or forget and brush a hair off my cheek, and I would start all over again. Nothing was worth the risk.
But this time when I washed my hands it was different. I was on autopilot, but I knew that she was safe from any contamination I could possibly bring. "But the other babies aren't," I reminded myself. So I washed.
Probably longer than ever before.
Out of the 60 or more walks I had taken down that hall, 3 of them felt like "the longest walk in my life". The first one was the day when she was 9 days old and the doctor called and said to be with her for her final hour. My mom and I took that walk together and each step felt like ten more were added in front of us. It felt like it took years to make it to that door.
But we finally did.
And there she was just kicking and waving around. And the doctor said he was surprised to see her like this, but not to get our hopes up.
But we did.
We always did.
I was always so confident that she was going to make it. The doctors would be talking to me in the serious tone that they use... reminding us of how critical she was and that every minute was a miracle with her. But I told the doctors that I wasn't worried because I knew she was going to make it.
She had to make it.
And that next day even the most skeptical of her doctors admitted that she was improving more than they could have ever hoped.
Maybe too quickly.
A little body can only strain and fight so much before it can't fight anymore.
And, My God! She was a fighter!
The second "longest walk" was earlier that day. Donovan and I walked together. This one wasn't quite as long as the one on day 9. She was improving, I had thought. She is going to be waving around and kicking and flapping and doing what she always did.
I was more wrong than I had ever thought possible.
I am generally a hopeful and positive person, but I can't even put in to words how hopeful I had managed to stay despite everything the doctors said. It was all I could do.
So back to the third walk, the walk back to her while the photographer was taking her pictures. This one was an eternity. Every step I took I felt like the hallway stretch out even longer. Like in the cartoons where the door at the end of the long hall streeeeeeetches backwards until it is teeny tiny and the hallway is like a mile long.
It was like that.
I never realized how awkward I am until that moment. I didn't know how to walk... I didn't know if I should cross my arms, or put my hands in my pockets, or keep my hands spastically up by my face to wipe my tears as I walked. I felt odd in my own body, like I didn't belong there.
I didn't even know what to do when I hit the doorway. The same doorway I had probably walked in and out of hundreds of times while she stayed in the NICU. I stood at the doorway and stared helplessly at the nurses. I felt like I didn't belong there any more.
A sweet nurse who's name I don't even remember came and took my hand and led me to her.
I will never forget what she said.
"Love on her, mama. She needs you."
And that was it.
The floodgates opened back up and I poured my tears onto the bed Leila was laying on. It looked like she was sleeping.
She even had a teeny, tiny little nightgown on.
The first and last outfit she ever wore.
They told me to hold her hand. To put her little fingers around my finger. To kiss her. To put my hands around her tiny little body.
I don't really know how to describe the experience. It's like being given a brand new car, minus the engine.
Okay, horrible analogy. It's nothing like that...
It's like getting exactly what you want, and the exact opposite of that at the same time. For the past two weeks all I had wanted was to hold her and love on her and have her not be in any pain.
But the last thing I ever could have wanted was for her to be lifeless. It was my nightmare.
It still is.
So back to that envelope in the mail. We both knew exactly what it was as soon as we saw the padded envelope. The final pictures of Leilani Marie Decker had arrived. We didn't open it at first... neither one of us knew if we could handle what was on the disc. We put it off almost until the last minute, right before Donovan left for the boat today, but we decided to go ahead and view them together so we didn't have to wait until he got back.
They were simply beautiful, but they made every part of my being ache for her. Only a parent who has lost a child can even remotely fathom the ache I am describing. I can't even begin to use words to explain it, and that is saying something coming from me.
I can't necessarily say yet that they have helped with the healing process, because I am still struggling with all of that and I will be for a long time. All I can say is that I have beautiful pictures of my daughter now. No wires, no tubes, no mask. Just gorgeous little Leila. I don't care what anyone else thinks - I know she was perfect. Absolutely perfect. And my heart aches for her every second.
So yes, I am still very, very angry. But more than anything, I am just plain heartbroken.