The Dance

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One of my favorite artists is Garth Brooks. He sings a great song called The Dance, in case you haven’t heard the song, here is the first verse and chores:

“Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you’d ever say goodbye
And now I’m glad I didn’t know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I’d have to miss the dance”

This song has become an anthem to me when the pain of losing Emma gets too tough. I had 5.5 months with her, and sometimes I question if this pain, the pain of losing her was worth those few short months. If I had known I was going to lose her, would I have still wanted her? What would I have changed? Would I have chosen a different path? Could I have saved her?

I don’t know all the answers, but I do know this- having her is worth this pain. The physical pain of her birth pales in comparison to the emotional pain of her loss. The joys of her life softens the blow left by her death. I know that if she was never born, if I never saw those 2 little pink lines, if I never hear her laugh or saw her smile, then I would not be experiencing this pain. I know I would not feel the fear of the future or concern of other children in my life. I would not have days when I cannot stop crying or days when I do not want to get out of bed. But I would also have never experienced the joy of holding her, teaching her and watching her grow for 166 days.

I will not lie and pretend that there are not days when the pain out weighs the short time of joy. Recently I told my husband that I wanted to pretend that she never existed. I wanted to take her photos down and erase her from our past. My heart was too full, and I could not see past the pain. My heart wanted to hide, and mind wanted to shut down. I wanted to forget because I was hoping that if I could forget, then I wouldn’t feel the pain. But it doesn’t work that way. You cannot escape the past. You can only deal with it. And dealing with the loss of a child is a day by day journey.

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A few days later, I found a tiny little Emma sock in the laundry mixed in with our adult socks. I sat and stared at that sock for about five minutes and thought about my little girl. I wondered how big her feet would be now, how long her hair would be or what color her eyes would be. I realized, no matter how hard I tried, I could never erase her from our past. She existed, and she left a permanent mark. She changed me, she changed my husband and our families. Her little sock made me realize the she was worth the pain and she would always be a part of our lives. I have two choices, I could hide and pretend that she was never here, or I could remember the good and live my life with her memory. I chose to live. She will be our angel who watches over us and her future siblings. I will do my best to honor her with my life.

Even if I knew I would lose her, I still would have chosen to have her. I could have missed this pain, but I would have miss the dance.

Weeping may tarry for the night, but joy comes with the morning. -Psalms 30:5

166 days

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When I was a kid my family visited the Grand Canyon Caverns in Arizona. The caverns are some of the largest dry caverns in the United States and sit over 200 ft below the surface. At one point in the tour the guide explains that, since the caverns are so far underground, no natural light can penetrate into the cavern’s rooms, without the artificial light you would become disoriented due to the lack of visual ques. Then they turn out the lights. The darkness is impressive, you really cannot see your hand in front of your face. Your brain starts to question which way is up, down, left and right. You reach out and find the first thing you can touch, your friend or family, the rail in front of you or the strangers standing in the darkness with you. Just when you think you’ll never see anything again, the guide turns on a lantern and tells a story about how the first explorers traveled to caverns with only these gas lanterns. The small flame lights about 6 feet of the darkness, just enough to see your next step.

Losing your child feels a lot like this. At first you can’t see, you can’t function, you don’t know which way is up or how to get out of this darkness. You cling to anyone who offers support. Your friends and family hold you up, the strangers you meet who have traveled this journey try to guide you. Sometimes you just need to lean on a wall or lay on the ground to remember or feel something solid. Then you see a little light, you start to see next step. Your friends and family add a more lights and you can see a little farther. You just see a few extra steps ahead, someday hopefully you’ll see the whole path. But right now, I’m just happy when I can see the next step.

Some days are easy. I can see the light, I can feel hope and peace. Some days, it takes every ounce of strength I have to get out of bed and get dressed. This is a bad day, today the light feels a little dim.

We got 166 days with our angel, today she has been gone for 166 days. As of today, she has been gone longer than she was here. I thank God for every single one of those 166 days. For every night when I woke up at 2 am to nurse, every day at work when I sat in the coldest room in the building to pump her milk, every evening bath and book. Every moment. I thank God for the blessing that was our beautiful baby girl.

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Today, Corey and I went back to the hospital and sat in the garden where we let go of our little girl. We took the bear I made for her, her photo and lit a candle. We cried and blew bubbles for her and just talked to her. As I sat and watched the bubble drift up into a beautiful blue sky and couldn’t help but think of how much she would have enjoyed this day.

Today was a bad day. Today was a dark day. But the good news is that I can still see some light. Even on my darkest day, my God is always giving me a light. It may only be a small little flame, but it gives me direction. Today I will fix my eyes on that light and keep moving forward. I will find the joy and the hope.

God blesses those who mourn, for they will be comforted. -Matthew 5:4

This Sucks!

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When I was a kid my dad would always scold me when I said “sucks.” Did it stop me, no, but now that I’m an adult I understand why my dad hated the term. In the days following the lost of our little girl, I found myself struggling to define the feeling I had. It felt deeper than grief, more consuming than loss, emptier than sorrow and more devastating than heartache. The only thing I could say was “this sucks.” No one corrected me because no one could come up with anything better to say. Even my dad never corrected me, he’d just say, “yes it does.”

Over the last 4 months I have had to come to grips with a reality that no parent thinks they will ever experience. No one expects to leave their child with a daycare provider only to get a call saying she in not breathing. No one ever expects to hear a doctor tell them that their little baby will never wake up. But the truth is that this is our reality. I have met countless women from all over the world who live this reality with me. We live a life without half our hearts. We are the ones no one wants to talk about, we are the one who feel we cannot share our stories because it makes people uncomfortable. We are the broken parents who have experienced every parent’s biggest nightmare.

We are angry, we are angry that our children are gone. We are angry that we did not get the miracle we prayed for. Some of us lost our children due to other’s mistakes, some lost children due to a mistake we made because we thought “it will never happen to me” or “I did this with my other kids and they are ok.” Some of us lost our children to medical conditions, either known or unknown, that didn’t allow our little ones to thrive. And others lost children for no know reason at all, unexplained death. It doesn’t matter why, it just sucks, no matter the reason.

This is our new normal and we must learn to live with the new normal. Regardless of the age of the child we lost, weather they are a few hours, days, weeks or years old, we must still live with the pain that is left behind. We do not just lose a child, we lose the future we had planned. The firsts we never get to experience. I never got to hear Emma tell me she loves me. She will never visit Yosemite Valley or swim in the ocean. She will never graduate high school or get married. I never got to potty train her or teach her to drive. I lost everything that I looked forwarded to and everything I dreaded. We had a big family trip planned to celebrate Emma’s first birthday- a week at Disney’s Aulani Resort in Hawaii. Her grandparents and her uncles were going to be joining us to celebrate her first birthday on the beautiful Hawaiian beaches with Minnie, Mikey, Lilo and Stitch. The trip is still planned, but instead of taking a rambunctious little one year old, we are taking an urn of ashes. And that just sucks.

Grief is not just emotional, it is physical. Our brain chemistry changes, our bodies what to shut down. For me the trauma has gone a little deeper. I was still nursing Emma when she died. Normally my body would have slowed my milk production until she didn’t need it any more, instead, I needed it to just stop. This abrupt stop and the stress of adjusting to the new normal has caused my body chemistry to go out of whack. I now must work with my doctors to correct this imbalance and try to remind my body how it is supposed to work.

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I tell you this not to request your sympathy, I tell you this to help you understand what we are going through. Not just my family but every family who has lost a child. We need your support. Please do not look away or ignore us when we share photos of our children. Please do not be afraid when we cry in front of you. Please listen when we share our children with you. Please tell us that you remember them and their lives made an impact on you. Please remember their birthdays and their angelversaries. Tell us you miss them too. If you know someone else who has lost a child, regardless of how long its been, reach out to them today and talk to them about their child. You will not make them sad, you will bring them joy. You are not reminding them of their child, they never forget their child, you are telling them that you remember their child. You are reminding them that you know how much this sucks and they are not alone.

A friend loves at all times, and a brother is born for a time of adversity. -Proverbs 17:17

Scotch Tape and Prayer

Emma was in a little crib in the PICU, she was the only child there that night. My mom found a flight out of San Diego that night and she and my dad were in their way down there. Corey’s mom was in a car on her way from Conroe and her husband was an hour behind her. My brother was on the road from Nashville and his girlfriend was book on a flight the next day. Michelle, Emma’s Godmother, was booked on a plane graciously paid for by her classmates. And I didn’t know what else to do.

I did the only thing I could do, I begged for prayers! I’m part of a few larger groups on Facebook- doggy groups, a running group and a few mom groups. I didn’t know what else to do so I begged anyone and everyone of my groups to pray for my child. I sent messages to the church I grew up in in California and our church in Texas. I also put a pubic post on Facebook and begged people to share. Thousands of people responded, commented and shared. Our pastor came to visit, pray and sit with us. I prayed and sang Amazing Grace to my baby girl.

I felt helpless. When Emma was five days old, we took her to church for the first time. I gave her to God that day and many times over the course of her short life. Every time I felt anxious cause she was at day care, wouldn’t sleep or she wouldn’t stop crying- I prayed for peace and Gods protection. I knew he was with her and with us, but I couldn’t understand why this was happening. I couldn’t understand why- We were faithful, we prayed, we tithed, we trusted. I still don’t understand.

I know my God is big enough to do anything, but I also know that God sees the larger plan. He has given us free will, and he has given us the ability to make mistakes. I do not believe that it was God’s plan for my child to die but I also know that we live in a broke world and sometime, for us to keep our free will, God must allow bad things to happen. I also know that this was not our fault, this was not our mistake. This is the worst thing that could have happened, and I hate it. I wish my God would have taken away our free will to save my daughter, but I know that is also not the plan. I do not know why this happened, there is a lot I don’t know. But there is a few things I do know- I know I will see Emma again someday, I know she is safe, I know she is loved, I know she waiting for me and I know God will use this for good. Romans 8: 28 “And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.”

Support and prayer have come from all corners of the world. Many people just simply say “I’m sorry” or “we are praying for you.” But I also have had many women who reached out to say “I’ve been where you are and I’m here if you need to talk.” These women became a life line to know I could get through this and I am thankful for each and ever one of them. My running group was amazing. They encouraged me to get back out there and keeping running. These beautiful women started the #lovemilesforemma (one of them ran the route below, impressive, right?) and got me back on my feet in a very tangible way. My daughter and her stroller were my running partners and my first run without her was more difficult than I thought it would be. We were training for my first 10k, unfortunately, I missed it but some day I will run it for her.

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Each prayer, each message, each stranger is like a little piece of scotch tape holding a little piece of me together. The stranger and flight attendants who allowed me to cry and talk to them on my flight back from family in California held me together. My friends are always there when I need to cry or complain or yell or just need a distraction keep me together. My family who will never allow me to forget the good times and remember the hope protect the fragile bonds that are holding the pieces.

Thank you for your support, your love and above all your prayers. They truly are keeping me together and giving me hope.

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My soul is weary with sorrow; strengthen me according to your word. -Psalm 119:28

 

The Eye of the Storm

20180311_110443Have you ever wondered how you would react in a crisis? Would you panic? Would your mind freeze or move 100 miles an hour? Would you know what you needed to do or would you run away?

When I first heard the dreaded words “Emma’s not breathing,” I panicked! I froze and collapse on the ground at work. I couldn’t see, couldn’t think, couldn’t speak. Then my mind cleared. I started yelling for someone to call Corey, my husband- I just stared repeating his cell phone number till someone said they were calling. Then I realized I needed to get there. My manager said let’s go and grabbed his keys. I don’t know how many traffic laws he broke to get me there in record time, but I know there were a few- the speed limit is just a suggestion right?

I was in motion. Corey was in motion. Now it was time to mobilize everyone else. Texts went out to my best friends and my church group. A call to my parents to notify them. No answer from mom, call to dad to find mom. No answer from my mother in law- next call was to my sister-in-law to ask her to get a hold of the mother-in-law. Everyone was in motion. My number one request was PRAY! PRAY Emma is ok! Pray! PRAY! Pray!

When we pulled into the day care parking lot, I was out of the car and running. A Williamson County Sheriffs Deputy caught me first and stopped me, then I saw my little girl. Three EMTs were pushing her toward the ambulance. She was covered with a thin sheet and they were pumping air into her little body. She was so little on that huge gurney. Corey was behind her and grabbed me. He held me and promised she would be ok. The sheriff deputy walked me to the front seat of the ambulance and a young EMT hopped into the driver’s seat. I heard the sirens scream as we pulled onto the road. As he drove the EMT explained that Emma’s heart was beating but she was not breathing on her own. He also told me to give them room when we got to the hospital, I knew this but the reminder was probably a good thing.

I stumbled out of the ambulance when we got to the hospital and walked into the side door with my husband’s arm around my waist. The cold, still air and hospital smell hit me and a young woman, whose face I will never forget but name I cannot remember, met us. She was a social worker and I hate that I cannot remember her name. We stood there as the wheeled Emma in, he was surrounded by nurses, doctors and her EMTs. We stood in the back of the room as they worked. The doctor called out that there was a red mark on her right ear, stating it was a possible injury. I corrected her, the red mark is a birth mark, she’d always had it. As they called out her vital signed I heard the worst words of the day. I heard the ER doctor call out that Emma’s eyes were “fixed and dilated.” I also know what this meant, this was not good. I cried NO and the young social worker (I think) pulled me into the hall way.

She tried to get me to sit, but I couldn’t. I needed to walk- I need to move- so she walked with me. I paced the ER. Small, slow steps. I stared at my feet and just kept them moving cause I needed to do something and I could not help my little one. She asked me about Emma and I talked about her. I talked about her smile and her little giggle. I held it together because I knew I needed to.

I don’t know how long we were in the ER but it felt like a lifetime. When the nurses took Emma for her first CT scan, the social workers took Corey and I up to the PICU (Pediatric Intensive Care Unit). The chaos and the storm raged around me, and I felt frozen and useless.

That feeling doesn’t stop. The evening, when they took Emma for more tests, Corey and I went outside for some fresh air, I remember listening to the cars in the road in front of the hospital, I could understand how they were still moving. I couldn’t understand how they didn’t realize the world- my world- was falling apart. I froze but the world kept spinning around me. I was the eye in the storm of chaos.

Blessed are those who mourn, for they shall be comforted.—Matthew 5:4

 

The Journey Begins

On March 15th, my little Emma, was at day care when I got a call that she was not breathing and EMS was called. I work 20 miles south and immediately rushed North. My husband was home, he was there within 10 mins. I arrived just as EMS was loading my baby into an ambulance. All we knew was she had stopped breathing and her heart had stopped, they were able to restart her heart but she was not breathing on her own. I was allowed to ride in the front seat of the ambulance as we drove with lights and sirens to St David’s Children Hospital in Austin, TX. There she was evaluated by the pediatric intensive care doctor and pediatric neurologist. Unfortunately, she has suffered catastrophic brain damage and we were told to “pray for a miracle.” On Saturday, we made the decision to remove life support on Sunday March 18th. It was the easiest and most difficult decision I have ever made. My heart broke when her heart stopped.

My husband blamed himself because he had the day off work and could have kept her home with him but decided to take her so he could do some work around the house and on his truck. I blamed myself because I chose this day care and they failed to protect my child.

Throughout my life I have had many ups and downs. There were times when I never thought the sun would shine again. In these times, I have always leaned on my family, my friends and my faith. Here I was share the struggles we face as a family and the joys we find- raw and real. There will be typos because sometimes I just can’t type. There will be tears because sometimes it’s all I can do. There will be smiles because Emma was amazing. And above all there will be joy because I choose joy.

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. -Romans 8:28

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