The Downward Spiral

Normally when I sit down to write, it comes easily.

My fingers flick over the keys, my thoughts seem to connect directly to my fingertips, and out comes what I am feeling.

Today I stared at the blank screen for a long time... Not knowing what to say, not knowing how I feel. I am ashamed and embarrassed. I feel like I am failing at one of the few things that usually comes easily to me.

I have been crying off and on all day. I had a nice distraction: took Landon to the gym with two other girls and their boys.

They both have babies.

Beautiful, gorgeous babies.

One is an adorable chunky monkey of a little boy.

The other is a breathtakingly gorgeous little girl. I can barely bring myself to look at her because she reminds me of Leila so much. A much bigger version of Leila, but the same dark coloring and features, though I can't ever be sure about the eyes, since I never saw Leila's eyes.

I love my friends: they are so wonderful and they care about me so much, but this numbness inside of me makes me feel socially awkward and inhuman. I wonder why any one would want to torture themselves by being around miserable old me. I feel sorry for the burden my friends have been given.

I can only pray that if one of my friends ever needs me the way I have needed them, that I can show even a fraction of the love and support I have been shown.

I realize that most of my thoughts today haven't been fully strung together. I guess it's mainly because I can't grab onto one and hold it down long enough to know what I am truly thinking. My mind is cycling through a million thoughts rushing through my head.

I keep going back to my pregnancy.

My perfect, strong, stubborn little girl.

My pregnancy was extremely difficult and very hard on my body, but Miss Leila... she was such a fighter! I was taken to the emergency room about 6 times throughout my pregnancy. Twice for seizures (one ended up being dehydration related), once for intense pain, once for contractions (at 18 weeks), and I can't remember the other two reasons. I was so terrified my entire pregnancy that I never let anything go unnoticed. I am sure my doctors thought I was crazy, but I was determined that I was going to have a perfect and healthy baby, no matter what it took.

She was perfect.

She was healthy, in the womb.

But four months early is too much for a baby, and she succumbed to this world.

I replay everything over and over in my head. She was so strong, she was so perfect. She was born too early.

What did I do wrong? I ate healthy, I remained moderately active, I took my prenatals, I listened to my doctor, I went to my weekly (yes weekly, from the very start I was seen every week), appointments, I didn't drink caffeine (except for the occasional latte now and again, which my doc said was completely fine), I wasn't around smoke, didn't smoke (never have anyway so that was easy), I didn't drink alcohol. I did everything by the book.

Everything.

I still failed.

Something, like writing, that is supposed to just come naturally to me, and it didn't. It just... slipped away from me. My body failed at being a good mother. My body failed her.

I failed her.

And now I am just falling. Constantly falling... Momentarily time freezes and I feel like things might turn so I can start "falling up" and get back on my feet... But then a baby cries, or I see an outfit I had bought one of for Leila on another baby, or I have to explain what happened, or I look in the mirror and hate what I see... and I start falling again.

But there is more to this story... There is an "up"... And it's all Leila. It's all her. It always was. She was always so amazing, before her life, and after it. She is a miracle. And next, I will tell you more about her legacy.

One Month Ago Today...

January 28, 2011...

One month ago today, my world stopped. The sun stopped shining, the earth stopped turning, and though in all actuality, it beats as well as ever, I am pretty sure my heart stopped, too.

I talk about Leila a lot, because I don't know what else to do. If talking about her makes others uncomfortable, then I am sorry. But she was my daughter, she was everything I could have ever wanted, and my time with her was so brief. I want to be able to remember every tiny little thing about her: from her teeny tiny little finger nails on her loooong skinny fingers, to her cute little nose, to her dark peach fuzz hair, to her skinny little legs and her adorable little feet.

I don't want to forget a thing.

It feels like just yesterday the doctors were starting to be more positive about Leila's fight. I remember joking with her doctor about how stubborn she would be as a teenager. I remember laughing and smiling and dreaming about her future. Can it really be true?

Has it really been one month since we said goodbye?

I am reliving those moments again and again right now. I remember walking down the hallway to her room. I remember the look on our favorite nurse, Donna's face. I remember looking at Leila's body. Knowing that something was wrong. Knowing what I didn't want to know.

That she was hurting.



Before Leila passed away I had received a link to a story about a premie baby girl. The story talked about the daughter's struggle and the parents' pain, then about how she grew into a happy and precocious little girl. One day when at a baseball game, the daughter asked her mom, "do you smell that?" The mom looked around and said "Yes, it smells like rain." The little girl said "No, mom! Do you smell that smell?" Again the mom said "Yes honey, I think we are going to get rained on soon." Finally the little girl says, "No Mommy. It smells like God, when you rest your head on His chest."

As soon as I read that story, when my Leila was still alive, I imagined that God was in her isolette with her. Holding her, breathing His healing breath on her. Comforting her. Any time her fight got rough, I told myself that God was holding her and taking away her pain. I told myself that she talked to God and He talked to her.

After she died, I found myself wondering if God was there with her. I wondered if maybe she told God she was ready to go.

If she chose.

I think I would feel better if I knew that she had told God she was ready, and that she didn't want to fight anymore.

I hate the idea that she just died. No sense to it, just death. It feels so final.

I want to believe that while she was resting her head on God's chest, she told Him she didn't want to fight anymore. That she wanted to go to Heaven and play with angels. That she loved her parents and her brother, but that even she understood that we didn't want her to suffer.

I think she gave us those last few minutes with her, to love on her and hold her for the first and last time, knowing that she was going to go home to God.

I pray with every fiber of my being that she is happy. That she will get some semblance of the childhood that was taken from her. That she will get to do all the things she never got to do down here: like run and play and laugh and cry and eat. And see.

I really hope she can see.

More than anything I wanted to see her eyes. I knew that they were still fused shut because she was so early. Because they weren't ready. I had prepared myself to raise a blind daughter. I didn't care: I would learn to read braille if I had to. I just wanted her to be healthy.

But now, now that she is in Heaven, I REALLY, really hope that she can see. I hope that she sees us and knows that we were her parents. I pray that she can see how much we loved her. And I hope that she can "see" the balloons we send up to her. I pray that she can feel the love her brother has for her. I wonder if he can see her and talk to her. Because sometimes, I swear he is talking to someone... He adores her so much.

I have so many thoughts bouncing around in my head.

So many things I can't put in to words...

So many things I have to do but don't know how to start.

For now I am going to snuggle on the couch with my sweet baby boy, and reflect on my baby girl's life.


<3 My sweet Leila. I love you so. I carry you with me in my heart everywhere I go. I pray for your peaceful rest. I love you, my sweet angel. <3

Leilani Marie Decker

About a month ago I wrote about how I was going to be a "better blogger" and post new recipes almost every day, blah blah blah...

And that didn't happen.

I am sure you are wondering why that didn't happen. If you know me in the "real" world, you already know the answer. If you don't know me, and you just happen to read this blog by some fate of the internet search engines... well, read on is all I can say. And if you, like me, are easily moved to tears: you may want to get some tissues ready.

I'll be honest. I am already crying.

So a month ago when I wrote that I would be posting recipes a lot more frequently, I had specified that one of those reasons was because I was put on bed rest for the remainder of my pregnancy. If you don't recall - my due date was May 12, 2011 (though my doctor insists it was May 18th according to her measurements). January 14th, I had a "normal" weekly ultrasound... my umpteenth ultrasound of this pregnancy... We went in as we always go in, smiling, excited, chattering about our daughter and how beautiful she is going to be and how perfect she is. During the first part of the appointment they did an external ultrasound. We watched in amazement as she flipped around and squirmed at the touch of the technician. After the technician had wiggled her around in all different positions and angles to get each picture she needed, it was time for the cervical measurement...

To spare you the gory details... this one is done with a... different approach. Not your normal belly ultrasound.

So anyway, as soon as the technician located my cervix to do the measurement (this is why I had to go every week), we both noticed something very alarming...

No cervix.

None.

It was gone.

And our baby was trying to come N-O-W.

I instantly panicked, and though I am sure she wouldn't want to admit it, the ultra sound tech looked a little panicked too as she quickly paged the doctor.

My husband stared on in wonderment - completely oblivious to what we were worried about. All he could see was his gorgeous baby girl swimming around on the screen.

After the doctor rushed in it was obvious that I wasn't going to be leaving the hospital pregnant. The next time I left the hospital, no matter how long or short it would be, would be after the birth of our daughter.

I was admitted within the hour and as I lay on the hospital bed sobbing uncontrollably, I listened to the doctors drone on about my condition and their ideas of how to stabilize the baby so I could continue my pregnancy in the hospital until she decided to appear.

But all the talk never went anywhere, because 48 hours later I was rushed in for an emergency C section, and our gorgeous daughter, Leilani (Leila) Marie Decker, was born.

She was everything we imagined she would be, just smaller. She had ten fingers, ten toes, the sweetest little nose you have ever seen, and lots of dark peach fuzz all over her sweet little head.

She was four months early, weighing in at just 1 lb, 4 oz. She was 11 1/2 inches long. She had the longest, skinniest little fingers. Everyone said she would grow up to be a pianist or a surgeon. Her eyes were fused shut - they hadn't finished forming in the womb and would need extra time to open now that she was "out".

She was so eager. She wanted to do everything her way: always kicking and thrashing around even when the doctors had her bundled up to help her conserve her energy.

She was our fighter. From day one the doctors said she may not make it through the first night, but she showed them. She fought and fought and survived day after day.

When she was nine days old the doctors called us and told us that she was in her final hours and we should come be with her.

We prepared ourselves for the worst, went to her side, and prayed.

And prayed.

And within a few hours, she started to respond.

The doctors admitted that even they didn't expect the turn around.

We spent ever minute with her we could for the next 24 hours. She was getting stronger, she was improving.

Everyone was impressed.

We left Thursday afternoon, around 11. We kissed her through the isolette. We told her we would be back on Saturday but we would miss her terribly. We sang to her. We laughed, we smiled. We were so confident in our little fighter's ability to thrive.

All night long we received updates from the doctors every few hours. It was obvious that our decision to leave the hospital, located about an hour from our home, was a hasty one. They told us to come back: that they were having to make some decisions that we would need to be there for.

We weren't worried.

We knew she would fight. We knew she was going to make it. But we hurried there anyway. Expecting to walk in and see her waving and kicking like she always did.

But that is not what we saw.

Our baby girl was struggling. She was in pain. She was dying.

They all knew it. Even my husband could look at her and see it was true.

Maybe I was selfish, but I wasn't ready to give up. The tears are rolling down over the keyboard as I write this, but I just wasn't ready to let go. No mother ever is.

The doctors asked me to hold her. To say goodbye.

So I did.

And I rocked her, and I sang to her, and I prayed that God take the breath out of my lungs and put it in to her. That He take my heart beat and let it beat for her.

But that didn't happen.

At 3:50pm, on Friday, January 28th, Leila passed away in my arms. I begged the doctors to revive her - to do anything to bring her back to me. I cried harder than I had ever cried before. I felt like I wouldn't be able to breathe. I didn't want to let her go.



The doctors said it was multiple organ failure. Her little body just couldn't fight anymore.

There aren't a lot of words I can use to describe how the past week has been since her passing.

I have felt so empty, so lost at times... like I will never be the same. I have felt so much guilt, so much anger. Helplessness, hopelessness... all these words describe only a portion of the emotional roller coaster I have been on.

And I know it will be this way for a while. They say time heals all wounds... but they never tell you how long it takes. There is no timeline on grief. But I know one day it will hurt a little less, though the hurt will never truly be gone.

My daughter was the closest thing I have ever known to an angel. When I think about her I am filled with so many different feelings. I feel so blessed to be her mother and to have been able to know her for 12 whole days. I feel heartbreak at knowing that I will never again get to hold her, I will never see her grow up. I will never watch my daughter walk down the aisle, or have her own children.

But I will also never see my daughter cry from heartbreak. I will never have to watch her get sick or be in pain. I will never hear her say the words "I hate you, Mom". All my daughter knows is a world where her parents love her and wanted her more than anything.

There are so many more words I want to write about this precious angel and how she touched me. I can promise you that I will talk about her often, but I can also promise you that I will be posting more recipes soon. Cooking has always been therapeutic for me, and as my life gets back to normal, I am sure I will find extra comfort in the kitchen.

This morning when I woke up, my son grabbed my hand and dragged me to the kitchen. He pointed to a box of Hungry Jack and said "Pease?" (Please in Landon speak). Though part of me wanted to crawl back into bed and cry, the other part (the cooking part) couldn't help but start thinking of a recipe. Here my living breathing child was hungry, and he needed his mama. So I did one of the few things I know how to do well: I thought up a recipe, and I cooked.

And it felt good.