Red for Zoe

February isn't just a time to celebrate Valentine's Day, it is Heart Disease Awareness Month and I am loving all the red hearts everywhere! WEAR RED to honor Zoe and the many heart babies that fight the leading cause of death in children.

Londyn Joy {3 1/2 years old)

I can't believe Londyn is a Sunbeam already!  She was hesitant to go to Primary because Grandma Milne was not going to be her teacher anymore.  Luckily, we have family in just about every auxiliary in our ward... so now Lulu has Auntie Nell as her Primary President.  Londyn is SO blessed to have family all around her.  Grandma at church, now Auntie Nell at church, Auntie Becca as her preschool teacher and now I'm one of her dance teachers.  Holy cow!

She wasn't exactly embracing Sunbeams on the first day... 

Of course, she loved it!  I love all these kiddos and can't believe how fast they are growing!  I want to retake this photo of all of them when they are Seniors in high school.  

Londyn has been pretty sick over the last week and we finally took her into our pediatrician last Friday.  Unfortunately, our pediatrician got called out for an emergency right when we got there so we had to wait and see one of her partners.  She was diagnosed with pink eye AND pneumonia.  Yuck.  

Later that afternoon, our pediatrician Dr. Green called to apologize for not being able to see Londyn and to check in on us.  I thought it was so sweet of her to go out of her way, just to make sure we were okay.  Dr. Green is so sensitive to our situation.  She goes the extra mile to make sure we feel comfortable and important.

 After two full days of antibiotics, she is feeling much better!  She still has a nasty cough and runny nows, but it's starting to turn around.  We have both been cooped up in our house for 5 days and needed to get some of this rare Winter sunshine that we're having.  We went for a walk on Sunday at the track and then hit up the playground.  I just love this girl. 

Kids say the darndest things..

Here are a few of Londyn's latest:

I overheard Lulu playing, telling her baby doll "I miss my sister. Do you miss my sister? She's in heaven with Heavenly Father and Jesus. Don't worry, we'll see her again someday."

Me: What word starts with an A? 
Lulu: Ahh... Ahh... APP! 

"We have to eat dessert or it will make Jesus sad."

When giving Londyn a piece of pepperoni pizza, she says "Umm... can you please take the round things off of my pizza?  Jesus says they will make my tummy hurt."

"Zoe is my best friend in the whole wide world and the whole wide world to be. Heavenly Father is my friend too, maybe." 

Londyn's prayers are the highlight of my day and they go like this...

Dear Heavenly Father, grateful for this day...

grateful for my home

grateful for my family

grateful for Zoe and to be with her someday

grateful for my whole spirit

grateful for Jesus

grateful for my body

grateful for my life

grateful for my friends and cousin friends

grateful for Jesus

grateful for our whole life and whole life to be

grateful for this world

name of Jesus Christ, Amen.

Dougy Center

 A few days before Zoe passed away, we were told by several people at the hospital that we should check out the Dougy Center for Londyn.  The Dougy Center is a non-profit organization that helps children grieve and cope with the death of a family member.  The organization is staffed with volunteers that facilitate groups divided by age.  Londyn's group of kids are aged 3-5 years old and meet every other Wednesday for about 1.5 hours.

The Dougy Center just opened a brand new home and we were the first group to ever meet there.  

This is the room specifically for Londyn's group.  The kids start out on these cushions with a stuffed animal and from what little I know, the kids are given a chance to talk about their loved one that has died.  I don't know much because the parents go to their own group upstairs.

They have lots of themed play rooms with musical instruments, arts and crafts, planes-trains-automobiles, dollhouse and castle, kitchen and even a hospital.

After our groups are finished, we all meet in the lobby and then the kids have a snack in the kitchen.

Londyn loved her first experience at the Dougy Center.  As you can see, she was thoroughly tuckered out!

I was very hesitant about the parents group session.  I had no idea what to expect of the Dougy Center, so I was a little concerned when I discovered I wouldn't be with Londyn the whole time.  I sat in a room with parents and grandparents who had also lost a child or spouse to cancer or other terminal illness and surprisingly, even more to suicide.  It was definitely an eye opening experience.  I am used to sitting and chatting with other parents.  But I have never sat in a room filled with only parents with a recent death in common.  Some of them seemed numb, angry and even physically ill as a result to their loss.

  

My usual chatty and social self was hiding behind the emotions that I tried so very hard to control.  But it didn't last for long because in the first 5 minutes, we had to go around the circle and say our name, who died and who our child was that we brought with us.  My plan to fly under the radar was out the window when it was my turn and I couldn't even open my mouth without my voice cracking and tears welling up in my eyes.  I knew at that moment that it was going to be a very long hour and a half.  

After listening to others explain their day to day grief and especially how they coped over the holidays, I found a sense of relief in this new place of strangers.  My initial discomfort lessened and I felt like I could really express my deepest thoughts about the death of my daughter.  I didn't have to worry about them being concerned about my mental/emotional state or muster up the energy to comfort them over my loss.  Even though the deaths they were grieving weren't the same situation as mine, I felt an unexpected relief in the unfortunate fact that they have probably felt the same or very similar.

My initial goal was to help Londyn find some clarity and freedom to express the death of her sister.  Little did I know, I would be finding the same.  

Lulu has been asking about the Dougy Center for days now and we look forward to going back tomorrow.

Christmas 2012

Tradition: Christmas Eve Jammies

After sprinkling magic reindeer food (raw oats and glitter) outside, we set out cookies and milk for Santa.  Londyn included a cute note for the big guy.  

At about 7:30am on Christmas morning, Lulu walked into our room and laid down on her "ground bed" on the floor.  When I saw her, I was too excited to let her go back to sleep so we all got up to go see what Santa had brought us.  

She got a castle tent and a "kitchen table" as she calls it... it's a table that is also a kitchen.

Santa's reply!  She was disappointed that Santa didn't eat all of the cookies we left out.

I didn't take a ton of pictures this year as I wanted to just enjoy the moments as they were instead of trying to reenact them in front of the lens.  I didn't snap any of Andrew, but I shocked him with an iPad which he thoroughly deserves.  He has and continues to work so hard for us.  I just wanted him to have a purely unnecessary and completely indulgent Christmas surprise.

Andrew did good this year.  I didn't have a wedding band and after our four years of marriage, this ring means more to me than if he had given it to me on the day I said "I will."  More than the diamonds, I am in love with the hearts.  When I look at my engagement ring, I instantly think of how that crazy boy  knelt down on one knee and placed it on my finger just a few days after we met... when I look at my wedding ring, I think of Zoe.  I think of our girls.  I think of our eternal journey together.

Like I said... he did good.

A few days after Christmas, we headed to the coast for an overnight stay.  It was a nice family getaway of relaxing, shopping and eating.  

My sister's family rented a condo with a three night minimum.  They only wanted two nights, so we took the third off their hands.  Jenelle's youngest daughter Samantha is one of Londyn's best friends.  Sammie is so good to Londyn and always makes her feel special.  We asked Sam to stay at the coast with us because Londyn gets lonely a lot and she made our trip so much fun!

Londyn's favorite dolly that she named Emily is never far from her side... even on a trip to the coast.

The girls had their own room with a flat screen TV.

At the outlet mall

The beach at night during low tide

Even though it was freezing, Londyn loved seeing the water and sand!

Always posing...

 Silly girls on the car ride home

Finding a New Normal

Thanksgiving and Christmas couldn't have come at a better time.  We needed the hope and joy that that time of the year brings, but New Year's was an unexpected day of heartache and tears.  New Year's used to be an evening of sparkling cider, watching the countdown on TV and kissing my love at midnight.  The first of the new year was a time of reflection, resolution and reinventing myself... again. December 31st was much different this time around.  I spent the day grieving the last 364 days that were the year 2012.  I spent the day crying over the birth and death of a miracle.  I spent moments sitting in the nursery, reliving precious moments that I had in that very rocking chair just several months before.

I felt every stage of grief that day...

Denial... trying to be happy and brave all the time, because that is what I can handle right now.  I can't handle tears.  I can't handle just checking out from the present.  I want to be strong.  I have to be brave. I have to show my husband and daughter that I'm not completely losing it.  I have to hold it together.

Anger... Why me?  Why my baby?  Why was I chosen to learn these lessons?  I have yet to feel really angry about losing Zoe.  But that day, I was angry that a cure for HLHS didn't exist.  I was angry that our cardiologist didn't bring Zoe into the hospital sooner to get her O2 sats up before sending her in for surgery.  I was angry at myself for getting the little sleep that I did because I could have been holding my baby during those few hours.  I was angry at myself for handing her over to the surgical staff that morning, naively thinking that she would be back with a new heart by the end of the day.  

Bargaining... thinking those dangerous words "what if..."  What if we had tried Fetal Intervention at Boston Children's... a method of cardiac repair in utero?  What if we had had a different Cardiologist?  A different Neurologist?  What if she hadn't had two strokes?  Would she still be here post Glenn?  What if I hadn't ever left her side in the hospital, to go home for a nap... a shower... or for clean clothes?  What if there was something I didn't do or could have done?  What if we hadn't taken her off of life support?  What if we had waited just a few more days?

Depression... I realized on New Year's day that a part of me died with Zoe and that I am broken and will always be broken until I am reunited with her.  She is a part of me that I will live without for the rest of my life.  She is gone.  No matter how long I keep her diapers in a bin downstairs and the baby monitor still sitting on my nightstand... she isn't coming back.

Acceptance... She's not coming back but I don't doubt for one second that we will be together again someday.  I will see her beautiful face in my arms again.  I will raise her and witness her growth into a beautiful woman.  I will touch her dimples, chubby cheeks and precious hands again someday.  She is mine and she is mine forever.  The past year was tragic and horrifying.  Heartbreaking.  I watched my daughter struggle and suffer and take her last breath.  I had to give her back.  It wasn't too soon because it was her time.  A few days more... a few weeks more... none of that matters because of that peace that was felt when I just knew that her work here was done.

The above does not lead me to believe in any way shape or form that I have and am finished grieving.  But it does give me a sense of understanding and ownership for the mess that are the thoughts in my head.

These last few months, I have been trying to find my new normal.  Six months ago, normal was living out of a suitcase, in and out of the hospital.  Normal was changing diapers and feeding bags every 5 hours, giving my child Lovonox injections on top of multiple medications twice a day and talking to doctors was the extent of my social life.  Six months ago, my life was normal.  Sleeping 8 hours every night, doing housework, having play dates and lunch with friends is not normal. But that is my life now.  When the clock struck midnight on New Year's Eve, it was 2013.  I was involuntarily moving forward.  "Forward" being the keyword as I will never move on but I will keep moving forward for my family, for Zoe and especially for myself.  Focusing on the daughter that I no longer have here is not going to be my theme for 2013.  I will not remember Zoe for the how's and why's of her death, but the messages that she delivered in her short lifetime.  I will remember her in all the good that this world has to offer and I will honor her in all the good that I have to give.

This year is all about finding a new normal with Zoe forever in my heart.

Zoe's grave on Christmas Eve