Not-So-Good Day

Bryan and I had a not-so-good day yesterday. I don't know exactly why. I'm sure there will just be days like that. We could not communicate, about anything. Bryan was thinking of Layla a lot and missing her. It didn't help that he had nothing to do all day to occupy his mind. Added to that, we went to get her birth & death certificates yesterday. Fine, as I was when I picked up her ashes, until I looked. I guess I've never seen a death certificate before. Seeing "THIS PERSON IS DECEASED" in bold & all caps on the top of the paper. Looking at it made it so real. So black & white. So cold. So obvious. I shed a few tears & was openly consoled by the clerk, Kylie, & Bryan. Then I had to write a check. Snap right back to reality & no time to actually think & process my thoughts. $20 for an 'official' paper stating she was born. $20 for one stating she died. Family members shouldn't have to pay for a death certificate. Isn't the pain of losing someone you love enough?

Not-so-good days. They're not bad, just not as good. Days that one of us, or both of us, or sometimes Kylie, think of Layla. Like yesterday before we picked up Layla's papers, Kylie said her eyes were watering because she missed Layla. Today we were shopping & she saw a little girl outfit asked if it was for Layla.

My mom & sister had a piece of art made for me. It's a one-of-a-kind piece (poem & photo) by a local artist they met at a craft fair. They ordered it the weekend before we had Layla. The artist followed my blog & kept in touch with my sister via emails. She even put a sticker on the back that says, "In Loving Memory of little Layla Faith".

I like to read it on my not-so-good days.

One more time

to hold you tight

One more day

just one more night

I was not ready to let you go

How I miss and love you so

You were my baby

my life, my dear

I thank God for

your short time here

My days seem longer

and sometime sad

But I know you're at peace

and that makes me glad

It's hard to understand 

why God needed you there

My perfect little angel

will watch over me with care

-Nicole Marie Ebben-

Aspired By Angels

Sister Talk

We had such a fun weekend! My 24 hour surprise getaway was perfect. We had drinks, dinner, & played Scrabble by the fireplace. (I won, 240-214. Sorry, Bry.) On Saturday, Bryan worked while Kylie & I went to Shawano for my nephew Jack's school dance! It was so much fun. Jack, Sam & Kylie danced the night away. I can just picture Kylie as a teenager. Sarah & I were lucky, and Ben slept the whole time.

Yesterday, Kylie had a friend sleepover. They played so well together. Bedtime went really well, however they were awake & giggly this morning at 5! Last night at dinner, Kylie's friend was talking about her brothers and sisters. She actually does have two brothers, and was talking about her mom as her sister. It was so cute. (Three year olds have the cutest conversations with each other.)

I wanted to chime in so badly! I wanted to say, "Kylie has a little sister!". I held my tounge because I wanted to see if Kylie would say anything. She didn't.

I was a little disappointed. The topic quickly changed to painting their nails, or playing with baby dolls. I just hope that Kylie remembers Layla as her sister. I know she's probably too young to really comprehend what that means. As she gets older, I guess I'd like her to feel proud of her sister in heaven.

I think we need something in our house to recognize Layla. I don't want it to be shrine-like. Just something simple. I finally took down our Christmas decorations. Now my house looks bare. I don't want to take down our stocking holders because we have one for Layla with a beautiful angel ornament hanging from it. I'm sure I'll think of something. I hung a picture of Layla on the wall in Kylie's room. She was so excited to have it. When I finally do something creative, I'll post it. :)

Speeding

I found myself going 80 mph on the highway yesterday. Some of you may drive that fast all the time, but I don't! It caught me off guard. Immediately, I let off the gas to slow down and thought to myself, "How did that happen? I wasn't even thinking about driving.". 

When I got home, and finally had the chance to sit and relax with Kylie, I realized that I've been speeding. I have just been going and going. It felt great at the time. Getting things done, feeling productive, learning things, enjoying fun lunch dates. I was caught up in the speed of it all. Once I slowed down, I became aware that I need to take some time for myself/my family. 

So, Kylie stayed home from school today and we slept in. Bryan has off today and surprised me with 24 hour getaway at this awesome hotel, The Iron Horse. A friend of mine had to design a hotel for a college project and showed me this one. Since then, we've wanted to stay there. 

Being busy, I haven't had the down time to sit and think about Layla. Which, I think is good. I still think of her all the time. But, I feel like it's getting better. When I do have time, I look at pictures or think of holding her in my left arm right after she came out. I remember feeling her chest move a few times, and how warm she was, and Bryan and I just staring at her every move. Now, it makes me smile. They are good memories. 

My sister and I were both watching a Hallmark movie the other night. It was about a little girl who had lost her mom and felt like she was forgetting. Her dad said, "That's what happens to everyone who loses somebody they love. That's just your minds way of protecting you. Making you forget a little bit so that your heart doesn't keep breaking." I guess what I'm trying to say, is that my heart isn't breaking every time I think of her. I'm glad that now, thinking of Layla makes me smile. 

I Don't Say 'It'

It hit me like a ton of bricks as I was watching Grey's Anatomy the other night. (Last week's episode.)

From Grey's Anatomy:

“Dr. Webber and I both used extraordinary measures,” Cristina said rather matter-of-factly, “but his heart could not tolerate the surgery. He did not survive the surgery, I’m sorry.” Altman responded: “You’re saying…you’re saying he’s dead? Say it. When you inform the family, you have to say it. Christina, I need you…I need you to say it.” Then the full truth came: “Henry is dead.”

I realized during this moment that there wasn’t a sound coming from me or my tv -- no sad song, no sound effects, no nothing. Just pain and heartbreak and sadness emanating from the screen at one million watts a second. Something happens to you when you experience someone dying. When you're with the person who is not going to survive. I was taken back to that minute, 5:18pm on November 29, 2011 when my Dr. checked Layla's heartbeat and just looked at me. (I have a picture of me, Layla, & Bryan from that second. It is an image of pure heartbreak.) She didn't say anything. She didn't have to. I remember a few minutes later, the nurse said, "Just so you know, the time of death was 5:18."

I've come to realize that I don't say 'it'. I've made phone calls, I've talked to friends, I've commented about the day she was born. But, I just don't say 'it'. Is it really that much nicer to say, "She passed away." or 'She didn't survive." or "She's no longer with us."? Sure, it does sound nicer. But why can't I say it. If I say it, it's real. Right? Maybe I'm not ready to say it. I've even typed it. Or said it in my head. But, honestly, I haven't spoken it out loud.

It's probably not all it's chalked up to be. I feel like it would just sound so harsh and cold and icky. Why is that? Is it because dying is a worldly thing? Because we, as Christians, have everlasting life? Life on earth is temporary. I know that someday I will be reunited with my little angel in heaven. For now, I'll just keep saying 'it' nicely.

A Diagnosis

Well, it's been six weeks since I posted about a normal Tuesday appointment. Generally speaking, my six week post-op went well this morning. Bryan didn't come, since it wasn't anything special. I didn't realize how difficult it would be, to sit in the waiting room by myself. Every single emotion from November 29th came back to me. Every little detail of that Tuesday morning appointment. Moments like that really catch me off guard. As I told my Dr., I was doing really good until I got there.

Our geneticist, who was always good at stalking us, stopped in to share some news today. The preliminary results came back from Cedars-Sinai. After studying Layla's DNA, x-rays and ultrasounds, her diagnosis is Achondrogenesis - Type II. It is not hereditary; it is a sporadic mutation; a lethal skeletal dysplasia that affects 1 in 40,000 to 60,000 births.

We are very pleased with this diagnosis. Basically it means that the odds of it happening with our next baby (yes, we want more kids.) are very unlikely. There are no guarantees in the medical world. This is the diagnosis that we've had since August. However, we didn't know the specific type, which is what determines if it's hereditary or not. Bryan and I had chosen not to share the diagnosis. If you google it, and now you probably will, the pictures are not pleasant. We wanted everyone to see Layla vs the images of 'babies with this' on the internet. Layla Faith was perfect in God's eyes and we think she was beautiful.

I've been reading an eBook by Gungor. Their latest album, "Ghosts Upon the Earth" is musically addicting. There is so much to hear if you really listen. The book describes the meanings of the lyrics and the reasons behind all of the things that were done musically for every song. Here is one of my favorite excerpts when Gungor is describing "The Fall".

Absence can actually be a testament to presence. I only long for those that I love, and I only love those who have been present with me in some way. If there was no one to love, there would be no one to long for. It is this mixture of emotions that "The Fall" explores. There's still a beauty to it. The melody is one of my favorites on the album, and I think the strings and the oboe at the end are just gorgeous together. It represents so well what I often feel internally. Mixtures of love and fear, courage and cowardice, wonder and complaints...It's not really the way I would prefer it to be, but that's how it is, and I'm learning how to be content in the night.