Wednesday, December 30, 2015

The New Year: A letter to Ethan

My Sweet Ethan,

A new year is just days away and I am not sure how I feel about it. It's been the hardest year of my life and, at times, I've wished that the year would end. I've half-jokingly said that I want 2015 to leave and never come back.

I'm so sorry, sweet baby. I never truly meant it. My heart just hurts so badly sometimes and I say things that I don't mean. I've always tended to respond to heartache in that way. I suppose it's easier to be angry than to be hurt.  I am sorry, my little love. I was never angry- only hurt- because I love you so and miss you with every part of me.

 I refuse to let my aching heart create anger within me. You were a beautiful gift. You were worth every moment. My aching heart does not compare to the joy that being your mom gives me.

Saying goodbye to 2015 is bittersweet. Although I have hope that the future holds good things, I want to tell you that 2015 has been the best year of my life.

2015 was our year.

It was the year that Daddy and I first learned of you. It was a year filled with joy.

2015 was the year that you and I were inseparable for seven months. It was the year that we sang in the car, listened to talk radio, read the Bible, went on brisk walks and ate all of the foods that your little body needed and craved.  It was the year that you grew to love Daddys voice. It was the year that you flipped, kicked and danced throughout the day and into the night. The year that you stumped the doctors time and time again.

2015 was the year that my understanding of unconditional love deepened. It was the year that I my heart was built into the heart of a mother. The year that I knew that I would have gladly done anything and everything to keep you safe.

2015 was the year that we held you. It was the year that we gazed upon your perfect face and kissed your tiny nose. It was the year that you breathed the same air as us. It was the year that you snuggled against my chest and slept.

2015 was the year that you entered into eternity with Jesus in heaven. It was the year that I began to think deeper about heaven; about the free gift that I was offered because of Jesus' death and resurrection.

2015 was the most beautiful, challenging, wonderful year of my life and I would live it again and again.

As we leave 2015, I don't know whether to feel sad or joyful. Leaving 2015 brings me further from you, yet closer to seeing you again.

Not a minute goes by that we don't think about you. You will always be loved. Thank you for making 2015 the best year.

We love you, sweetie pie.

Love always,
Mommy




Wednesday, December 23, 2015

Wake me up when December ends


If you're looking for holly and jolly, move along. If you want something unfiltered, here you go. 

If you ask me, we don't allow much room for people to be real during the holidays. We have very high expectations of the general population, regardless of what they're going through.

The cashier at the store doesn't smile.
What a grinch. 

Someone declines to send holiday cards.
Such a scrooge. 

Someone brings up a sensitive subject at a social gathering.
Oh come on, it's the holidays for crying out loud. 

Our culture expects people to plaster on a smile and spread Christmas cheer. Society expects everyone to be merry and bright. We don't care what they're going through. Death of a loved one? Loss of a dream? Unemployment? A broken family? Cheer up, it's Christmas. Slap a bandaid on that bullet wound and drink some eggnog.  

On behalf of the hurting and the broken, I'll be real. Every grief is different and I cannot speak for everyone, but I'll give you my perspective- December stinks. If we could just fast forward to January that would be awesome.

Now hear me out. I understand that Christmas is special. We'll get there. Just stick with me for a minute.

It is hard to care about the little things when my heart is hurting. The decorations. The music. The food. The gifts. All of my energy gets thrown into trying to survive and there is little energy left for the details.

What do you want for Christmas?
Um...for it to be January 2nd. Bah-humbug. 

Social gatherings can be exhausting. Yes, even for an extrovert. Carrying on a conversation can be plain exhausting when all I want to do is go home and cry. When it takes every bit of strength to hold it together. When everyone is smiling and I feel so out of place, as my heart lays shattered in a million pieces. When someone asks a hard question, causing me to reveal my brokenness. When no one asks the hard question and I feel as if everyone has forgotten. It's easier to limit social gatherings to the people you feel that I can be real with.

The store is a breeding ground for stress. A crowded place brings great potential for exhausting conversations and experiences. More well-meaning questions about the amount of children that I'm shopping for. More parents screaming at their children...I'm not talking about discipline and frustration. I'm talking about people completely losing their minds and calling their children mean names, while I would give just about anything just to have another hour with my baby.

I lose patience for petty things. If I'm not careful, that impatience can evolve into bitterness. I have little interest in the shopping list, complaints about the long line at the store or the great What-Outfit-Should-we-Wear-in-our-Christmas-Card Crisis of 2015. Boohoo, you'll survive.

Making decisions is hard. Dealing with grumpy people is hard. Dealing with happy people is hard. Just dealing is plain hard. I've cried in the car, I've cried in the mall and I've cried in Target. Yes, big meltdown in Target. One moment my husband and I are discussing what to buy a family member for Christmas and the next moment I'm crying big tears over what I would buy if Ethan were here. (Thankfully, I have the most amazing husband in the world who affirmed my tears and agreed with a simple, yet sweet, "It's okay. This sucks.")

I began to question my intentions. I felt guilty for feeling so fed up with Christmas. Be happy! It is the holidays after all. 

But then a realization hit me. I should not feel guilty for avoiding the westernized cultural aspects of Christmas, as long as I kept the main thing the main thing. (Although I honestly don't think it's wrong in itself to watch Hallmark movies or eat Christmas cookies.) In the midst of the heartbreak and overwhelming pain, the truth of Christmas has become more real to me. And the truth brings me comfort. In a way, Christmas is more meaningful to me than it ever has been before. Sure, I could go all year without hearing another carol, eating another cookie or visiting the mall. But the truth of Christmas has hit me upside the head.

O come, o come, Emmanuel, and ransom captive Israel. 

Christmas is about God coming to earth to rescue his people and to offer salvation to a broken world. God's people waited for the Messiah to come. They faced persecution, slavery and tribulation. They longed for a king. They longed for peace. Jesus came to die on the cross, to set his chosen people free.

That mourns in lonely exile here, Until the Son of God appear. 

Jesus came to offer hope to a world of heartache. He knew that the world was broken. He knew that the world was hurting. He knew that people were fighting to keep going. That is why He came. To offer rescue. To provide hope.

Rejoice! Rejoice! Emmanuel shall come to thee, O Israel! 

He came. He came to offer salvation to those who call on His name. He came and He is coming again. He is coming to conquer evil and brokenness. He is coming bring justice to the Earth. He is coming to wipe every tear from our eyes.

Rejoice!

Isaiah 9:6-7 "For unto us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and peace there will be no end. He will reign on David's throne and over his kingdom, establishing and upholding it with justice and righteousness from that time on and forever."

So many people are hurting this season and we need to offer love and grace to the broken. The cashier in the grocery store may be hurting. The person who cut you off on the freeway may be hurting. The neighbor that never smiles may be hurting. We need to share the reason why we rejoice.

I also want to take a moment to tell you all that I care. If I have been distant or moody at times, I apologize. My hurt does not give me an excuse to be rude, and while I've done my best to be pleasant I'm sure I've messed up a time or two (or ten or twenty). Please have patience with me and please forgive me. You are loved. 

Tuesday, December 15, 2015

But I do have identity

I don't fit in.

I am a mother who can't relate to baby talk.  I don't know much about sleep schedules, tummy time, important milestones, the proper way to buckle a car seat, what temperature the bath water should be, what music baby likes best and how to calm a crying baby in 10-seconds flat.

 I've experienced my water breaking, laboring a child to full dilation, and emergency c-section recovery. I understand milk production and how to soothe related aches and pains. I know very little about babies, but a whole lot about childbirth. My son was born four months ago and went to heaven 93 minutes later. He spent his life in our arms. There was no routine. There was no opportunity to morph into an expert. There were only whispered "I love you"s, soft lullabies and tearful prayers. 

Yet, I know I am a mother. I am forever changed. The moment I got pregnant, I became a parent. I don't think like I used to.  I completed my pre-baby goals. I kissed elaborate vacations goodbye. I baby-proofed my life. I began to think about birthdays, holidays and celebrations as an opportunity to create meaningful family traditions for the next generation. We willingly traded in our young married days for a new chapter, filled with dreams about of a house full of children. 

Someone who has lost a parent is an orphan. Someone who has lost a spouse is a widow or a widower. What do you call a parent who has lost a child? There is no word for it.  I am not saying that the grief is any more than the other two...I'm simply saying that child loss shakes your identity.

Who am I? The question rattled around my head, as I left yet another awkward social gathering where I just didn't fit in.

Who am I?  I am a wife and a mother. I am a mother with no babies at home. I am a 27-year old empty nester. I am a mother who loves her child fiercely, every moment of every day, despite the distance. I am a broken heart, but better because of it. I feel the pain of those around me fiercely. I cannot watch the news without sobbing. I empathize with the hurting, because I know what it feels like to have the breath sucked out of your lungs and to feel as if your entire perspective on everything you ever knew has changed. I am a million things, yet I do not belong.

Who am I?

And then the truth hit me.

I may not belong, but I do have identity. 

This world is not my home. I'm not supposed to belong.
Hebrews 13:14 "For here we have no lasting city, but we seek the city that is to come."

I am a child of God. 
John 1:12 "But to all who did receive him, who believed in his name, he gave the right to become children of God."

I was created for a purpose. 
Ephesians 2:10 "For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them."

He has identified us as his own, by giving us the Holy Spirit.
2 Corinthians 1:22 "He has identified us as his own by placing the Holy Spirit in our hearts."

I cannot put my trust in man. In this world. In anything, other than Christ. 
Colossians 3:1-2 "Since, then, you have been raised with Christ, set your hearts on things above, where Christ is seated as the right hand of God. Set your minds on things above, not on earthly things." Psalm 118:8 "It is better to take refuge in the LORD than to trust in man."

I do not belong. I do not fit in.

But I do have identity. 

Wednesday, November 25, 2015

In all circumstances


I've sat down to write many times in the last few weeks. I've started multiple blog entries that have remained unfinished. I'm realizing that it is easiest to write on the days that I feel strength in the brokenness. There are other times when I know that Strength is there, but I can't quite articulate it or feel it...those are the days that are the hardest to formulate the words.

I'm just going to be real with you. If we could just skip the rest of November and all of December, that would be awesome.

Earlier this year, I had envisioned celebrating Thanksgiving with a month-old Ethan. The day would be quite the ordeal- We'd dress him in a perfect "First Thanksgiving" onesie, pack a diaper bag with plenty of necessities, and manage to prepare a side dish. We'd visit our families, who would fight over who got to hold him first and would spend the day doting on him.

Earlier today, I fought back tears as I stood in the checkout line, holding a bouquet of sunflowers against my chest. I watched the people rush around me completing their last minute shopping and I felt bitter. None of the things that I had envisioned where taking place. Instead of purchasing the perfect Thanksgiving outfit, I was purchasing flowers for my son's grave.

What do I have to be thankful for?

And then I realized the truth. I have a lot to be thankful for. I began to count the things in my head and I felt so humbled by the realization of the incredible things that I have in my life.

I am so thankful for my husband. He has stood beside me through the hardest year of our lives. He has encouraged me, laughed with me, cried with me, stood up for me, protected me, and has sat with me when I needed a friend.

I am thankful for friends. No matter how isolated I have felt at times, there have been so many people from all seasons of life who have stuck with me. Who have prayed for us. Who visited us in the hospital. Who sent me care packages. Who call and text. Who have stopped by my office just to give me a hug. Who can go weeks without speaking, but I know are 100% there.

I am thankful for new friendships that have formed since losing Ethan- the grieving- the worst "club" to belong to, but the most supportive and beautiful hearts.

I am thankful for our home.

I am thankful for a job that I enjoy. For coworkers who are supportive. For a family-centered environment.

I am thankful that I did not have deliver Ethan via planned E.X.I.T. Cesarean. I am so thankful that the extensive procedure, which would have placed me under anesthesia and rendered me completely unaware, did not take place...I would have missed so much and been so groggy. I am so thankful that I was completely present for Ethan's birth.

I am thankful that my body is healing. That my body is restoring itself to perfect health. That the health issues I have faced in the past have seemed to disappear, since giving birth to Ethan.

I am thankful for the opportunities that I've had to share Christ's love because of Ethan.

I am thankful for eyes that have been opened to the pain around me.

Silly as it may sound to some, I am thankful for my dog. She practically throws herself on me when the anxiety, panic, and/or breathlessness starts to rear its ugly head. She should seriously be a PTSD dog. She's sharp.

I am thankful that the hospital bill that came in the mail this week was waived by our insurance.

I am thankful to be Ethan's mommy. I am thankful to have known him. I am better because I knew him.

I am thankful for grace and redemption.

I have been given so much that I do not deserve and for that I am so thankful.

Give thanks in all circumstances. I Thess. 5:18

Thursday, October 8, 2015

August Sixteenth


It is no secret that every woman who has ever had a baby loves to tell their child's birth story. I had always suspected this, but it was proven over and over as I listened to millions of birth stories as my belly expanded. Some were sweet, while others were flat out terrifying.

(Have you seen that "Weird Advice Pregnant Couples Get" video? And the lady in the checkout line starts going on and on and on and on about how badly she tore with her son? Yep, that really happens. Complete strangers. All. The. Time.)

After Ethan was born, I suddenly understood the hype behind birth stories. Having a baby is one of the most frightening, yet most incredible and joy-filled experiences of your life! Who wouldn't want to share that?

At first, I was convinced that no one would be interested in hearing about our birth story. You see, our story has a bittersweet ending. It is not a comedy, with a sweet twist at the end. Our story is like a heartbreakingly beautiful drama, which leaves you in tears as you leave the theater. Yet somehow, despite how badly you sobbed during the ending credits, it's still your favorite movie.

That is Ethan's birth story.

His birthday was the happiest day of our lives. Like any parent, we felt the overwhelming love that you feel when you look upon your child's face for the first time. Like any mother, I will always cherish the moment that he was laid onto my chest. We will always celebrate the day that we learned that love at first sight is not just something out of a fairy tale. It is real.

Yes, the story had a heartbreaking ending. But like any great movie, it is still a great story. And one that I now love to tell.

Don't worry, I won't dump all of this on some unsuspecting girl in the grocery store checkout line! Can you imagine? Yikes!

Ethan's Birth Story
I have never felt healthier than I did when I was pregnant. Perhaps it was because of my lifestyle, or perhaps Ethan was just a laid-back baby. I felt wonderful! I jogged three times a week. I took naps when I needed them. I ate a healthy, well-rounded diet of whole foods and always made sure that I was eating enough calories, fruits, veggies, protein, etc.

Then the third trimester hit me like a load of bricks.

The easy breezy days of the first and second trimester were gone. I felt sick and tired. To top it off, my back hurt so bad that I started to wake up in the middle of the night with excruciating back pain.

Less than a week before Ethan's birth, I had an appointment with my doctor and I told her about the back pain. She began to ask me a series of questions: Have you noticed any blood? Are you having contractions?

"I've been having tons of Braxton Hicks contractions all week...Can you explain to me the difference between Braxton Hicks contractions and real ones?"

My doctor explained the difference. She assured me that a real contraction would feel painful, but encouraged me to stop by Labor and Delivery if I ever felt concerned.

I shrugged it off. I wasn't in much pain. There was no blood. I was fine.

That Saturday, I woke up feeling awful. I laid in bed, crying, because I felt so uncomfortable.  Chris was gone for work, but was expected to be back around noon. I had wanted to run errands before he got home so that we could spend time together. I finally mustered up enough energy to take a shower and go to the store. It took me two hours to get ready, simply because I was so uncomfortable. I kept stopping to lay down or stretch out my aching back.

The rest of the day was fairly routine. I went grocery shopping. Chris came home. We ran a few errands together. I made dinner. We watched a movie. We went to sleep.

At 11:30pm I woke up to a gush of water. I woke Chris up and told him that we needed to go to the hospital. There was no mistaking that this was it. It kept coming. And coming. And coming. And coming. And coming.

Since I had such a high risk pregnancy, I had an extensive birth plan set up for me at a Hospital #1 in Los Angeles. However, most of my routine appointments had been with a specialist at Hospital #2 about 45 minutes away from our house. My doctor had told me that if I were to ever go into labor early, it would be best for me to go to Hospital #2. She told me that they would try to stabilize my contractions and possibly transport me to Los Angeles, but it would be unwise for us to try to make the long drive to L.A.

45 minutes later, we arrived at Labor and Delivery at Hospital #2. Chris was instructed to wait in the lobby, while a doctor and a nurse checked to see if I "was actually in labor". The doctor was going to check to see if my water had broken and quickly determined that it sure had. Next the doctor told me that she was going to do an ultrasound to see how Ethan was doing. As she rolled the probe over my belly she stopped and asked, "Are you feeling any pain right now?"

I thought for a moment. My back ached, but I was not really in any pain. I told her that I was not in pain.

She smiled and seemed amused. "Well you're having a huge contraction. Do you see how tight your stomach is?"

I looked down at my tight belly. "It's been doing this all week!" I said. Apparently all of my "Braxton Hicks" contractions had been real. Oops. Now the doctor and the nurse start joking about my "iron-woman pain tolerance" and giving me kudos for coming into the hospital at 3cm dilation, no medication, still smiling.

The nurse brought Chris back from the waiting room and checked us into a room. The doctor explained that they were going to give me medication to slow down the contractions and a steroid to help Ethan's lungs develop. She told us that we would discuss a plan with a specialist in the morning, but for now it would be best to get some rest.

It's practically impossible to sleep in a hospital room, so I just did my best to rest my eyes. I spent the night listening to Ethan's heart beat, along with several bouts of hiccups, thanks to the monitor that had been attached to my belly.

The next hours were seemingly uneventful. I met my new nurse (who was wonderful. I could write so much more about her.). I ate an omelette for breakfast (which I ended up tasting again later. Gross.). Family came by and left. I had a few more contractions (now that I knew what I was feeling).

Early that afternoon, the Labor & Delivery doctor and a NICU doctor came to my room. They told us that they had made the decision that it would be best for us to deliver Ethan in Los Angeles. They had already contacted Hospital #1 in Los Angeles and they were going to get ready to transport us. Before they made the transport, the doctor wanted to do a quick exam to see how my labor was progressing.

The doctor asked my nurse to give me a catheter, so that I would be ready for transport. The doctor continued to talk to me, as my nurse inserted the catheter.

The moment the catheter went in, I felt intense pain. It was an instant change. I had never had a catheter before and I just assumed that it was causing me to feel pain.

I couldn't help but let out a moan. It hurt. Bad. My teeth started chattering and my body started trembling. "Okay, it hurts now." 

"It's okay, honey. It may only sting a second but it shouldn't last any longer than that," my nurse said.

The pain grows stronger. At this moment my whole body is shaking and I'm practically in tears. I'm doing everything I can not to moan. 

The doctor looks concerned. "Can you describe to me what you're feeling?"

I try to breathe and do my best to keep my voice steady. "Pressure...and....burning...ow, yeah this is bad....yeah, lots of pressure..."

The doctor checks my cervix and comes up with a smile on her face. She takes my hand and hers and says, "Honey. I just touched your baby's bottom. You are dilated. It's time. You're going to have a baby!"

Then she says the magic words, "emergency c-section", and a SWARM of people descend on my room. The rest is a blur. Within seconds, my entire hospital bed is being wheeled down the hall to an operating room and Chris is being handed scrubs to change into. Everything is happening so fast and I'm just doing everything I can to keep breathing and ignore the fact that my entire body is literally shaking with pain.

My nurse coaches me and cheers me on for getting so far by myself. She holds my shoulders and helps me arch my back, as the anesthesiologist sticks a needle into my back. She helps me lay on the operating table. My lower body goes numb. The curtain goes up.

Chris takes a seat by my head and squeezes my hand. "I'm so scared. Can we pray?" I say.

Chris prays. We say "Amen".

As we open our eyes, a nurse walks by carrying a baby. Our baby. To the incubator.

His heart rate is strong. He is here.

Within minutes, his heart rate begins to drop. A team of doctors surround him and begin to work on him. I write much more about this part in the story I've been working on. For now, I'll save those details for later. It's hard to read and even harder to write. After 30 minutes of hard work, the doctors determined that there is nothing else that they can do.

They tell us this.
We cry.
They ask if we want to spend his last moments with him.
We do.

We hold him. We fall even more in love with him. We kiss him. We sing to him. We love on him.
We celebrate him. His life. All 93 minutes of it. The most beautifully heartbreaking, devastatingly joyful day of our life.


*Ethan's entire un-condensed birth story can be found in a manuscript that I have been working on over the last few weeks. This complete birth story takes up 15 single-spaced pages, of what has grown into a 70-page (and counting) manuscript. 

Monday, October 5, 2015

I miss him too

On the day his heart began to beat, you swore to protect him.
You were vigilant. You never let me leave your sight.
You gently pulled at my body and made me sit down, when you saw I was working too hard.
When strangers got too close, you told them to back away.
You laid your head on my belly and listened to his heartbeat every night.

One day, I came home without him.

I called your name. You stared at me with big brown eyes and refused to come to me. I called you again, tears streaming down my face. Instead of running to me, you backed away. You laid down on the ground and continue to stare at me with sad eyes.

It's okay, I miss him too.

For a week, you stayed your distance. You watched me from afar, never coming near me. When I tried to reach out to you, you withdrew.

It's okay, I need space sometimes too.

You stopped sleeping through the night like you used to. Sometimes you'd whimper. Other times, you'd wake up growling and barking, as if you had awoken from a nightmare.

It's okay, I cry at night too.

You used to eat your food with such enthusiasm. Now you barely pick at your dinner before I coax you to eat the rest.

It's okay, my appetite isn't what it once was either.

One day, you came to me with sad eyes and laid your head on my empty belly. As I laid on the floor, you laid your body over mine to shield me from the sadness. On that day, you swore to protect me. You are vigilant. You never let me leave your sight. My little shadow was back.

It's okay, girl. I miss him too.

*A horribly corny (yet heartfelt) letter to my dog, Dakota, who protected our son Ethan with her life. 

Wednesday, September 30, 2015

Learning to Walk Again

The death of a beloved is an amputation. -C.S. Lewis, A Grief Observed

Sweet Baby, 

Losing you feels like losing an essential piece of myself. The pain is both emotional and physical. I ache for you. For the piece of myself that lives in heaven. 

I'll never stop missing you. Eventually I'll learn to walk with only one leg- but I'll always be aware of its absence. Some days will be easier to walk than others. 

I'll learn to walk again one day. But sometimes I'll forget how. I'll keep going, fighting, with just one leg. 

I love you, sweet peanut. 

Love always,
Mommy

Friday, September 25, 2015

Weak

"You're so strong."

People say things like this a lot when you lose a child.

Perhaps it's because they can only imagine how badly it hurts. They cannot imagine ever having to walk that road. No one ever does.

Until it happens to you.

I am going to step out on a limb and be very real with you: We are not strong. In fact, it usually feels weird for us to hear this comment. We take a step back and wonder, "Are we living dishonestly? Do people not see that we just don't have it together?" It feels strange to accept that comment, when we know that it just is not true.

We are weak. So very weak.

We cry. (A lot.)
There are days when I yell at God.
There are nights when I have laid awake weeping.
There are mornings when I just don't have the strength to get out of bed.
I have felt hopeless. I have felt worthless.
We have gone to counseling.
I have called life a "cruel joke".
I have battled bitterness.
I have cried again. (A lot.)

We are not strong. But Jesus is.

"My grace is sufficient for you, for my power is made perfect in weakness." (2 Corinthians 12:9)

Knowing Jesus does not mean that you will not experience heartache.
Knowing Jesus means that you will be held, even when your heart is broken.

Psalm 34: 18-19
The Lord is near to the brokenhearted and saves the crushed in spirit. Many are the afflictions of the righteous, but the Lord delivers him out of them all.

Wednesday, September 23, 2015

One in a Million


Yesterday we learned that Ethan Daniel had Full Trisomy 9.

This condition is extremely rare. I've found very little on this condition in all of my research. In fact, one website I found on the topic of Mosaic Trisomy 9 and Partial Trisomy 9 even said, "Full Trisomy 9 does not exist." Well let me tell you, I have an official report from Ethan's doctor stating that our son had an extra copy of the 9th chromosome in every single cell of his body.


Diagnosis: FULL TRISOMY 9


Not Trisomy 9p, not mosaic trisomy 9. Full. 


As we met with the specialist to discuss Ethan's test results, I was struck by two major realizations: One: Every life on this earth has a purpose. Period. Two: God hand-selected Ethan Daniel with a plan.


First a little overview of what we learned:

(I'm no scientist, so please bear with my plain-Jane explanations.)

1. Full Trisomy 9 is always fatal.

2. Babies will Full Trisomy 9 are almost always miscarried in the first trimester.
3. Trisomy 9 is so rare that the California Prenatal Screen Program and the Non-Invasive Prenatal Testing blood tests do not even screen for it.
4. The doctor who delivered Ethan had never seen a baby with Full Trisomy 9...before Ethan that is.
5. Ethan's condition was "randomly occurring" and was not genetically passed down.

As the specialist (who also seemed surprised that our son had Full Tri 9) began to explain the process of conception and the formation of the 23 chromosome pairs, Chris and I were both blown away by the complexity of life. If one tiny thing goes wrong, we die. Every single tiny cell must properly split, attach, form, etc. in order for a healthy human being to be produced. If you ask me, it seems as if there are more things that could go wrong than could go right. Yet somehow, hundreds of babies are born every day.


How in the world are any of us alive? It seems impossible, but here we are! Surely, there is a God strategically forming each tiny cell.


Every person on this earth is a miracle, hand-selected by God to live. It completely opened my eyes to the value of every single person around me. Do you realize what value your life has?


Psalm 139: 13-16

 For you formed my inward parts;
    you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.


The second thing that I realized is that Ethan was a one-in-a-million miracle. The rarity of Ethan's condition was confirmed over and over. Doctors seemed so surprised that Ethan, a baby with Full Trisomy 9, made it to the third trimester and was born live. The spontaneous nature of his condition, and the miracles along the way, prove to me that God had a purpose for this anomaly; We did not give this to him and there was nothing we could have done to cause this.

There are many more answered prayers, than unanswered ones. 

We were told, "This was a baby that probably should've been miscarried"..but he didn't. 


"These babies aren't born alive"...but he was.  


We begged and pleaded with God for a child, and he answered. 


We prayed from day one that God would use Ethan's life to bring people to know Jesus, and he answered. 


We prayed that God would protect Ethan in the womb, and he answered. 


We prayed that God would give me a smooth delivery, and he did. We prayed that God would give us the opportunity to meet our son, and he did. Not only that, but he gave us 93 minutes with him. 

With a one-in-a-million baby that "should have" naturally miscarried. 

We prayed that God would allow Ethan to come home with us, and he said no. One "no" in a sea of yeses. One "no", that provided Ethan with much more than we could have ever offered him. Ethan will not come to us, but we will one day go to him. 

God knit Ethan perfectly together for a purpose. His eyes saw him; every one of those 93 minutes were written in his book. 

I miss you, my little fighter. I've said it once and I'll say it again. I'd do it all over for you. Even if I knew the outcome. I'd do it again and again and again. 

Friday, September 18, 2015

Three Camps: Understanding your grief support network

I would like to start this post off by staying THANK YOU to all of the people that have been there for us through our grief. No matter what "camp" you were a member of, we always felt your love for us and have truly appreciated your care for our family. I personally have been a member of all three camps at various times. This post is for those either trying to navigate their own grief support network, or to those who are supporting a friend through grief. 


“I see people, as they approach me, trying to make up their minds whether they'll 'say something about it' or not. I hate if they do, and if they don't.” 
C.S. Lewis, A Grief Observed


Grief is a complex issue to navigate. It's complicated for both the grieving and those who seek to support them. Since losing our son Ethan, several close friends have asked me about how to respond to to our hurt. "What is helpful? I wish I knew what to say. I can't imagine what you are going through. I don't even know where to begin."

First off, let me say that you are a good friend for even asking that question. Thank you.

I've been wanting to write something for those of us that are newly grieving; Perhaps listening in will shed some light on this complicated situation. 

.   .   .   .   . 

Three Camps: Understanding Your Grief Support Network

In the weeks since losing our son, I've noticed that there seem to be three different "camps". People tend to respond in one of three ways. 

Camp #1: The Mr. (or Mrs.) Fix-its

This camp is filled with people that love you so much that they want to do whatever they can to take your pain away. They want to provide you with that perfect piece of advice; As humans, our advice is often imperfect, although I do believe that this camp has the purest of intentions. 

"Don't cry. Your loved one is in heaven! We should rejoice!"

I am happy that my loved one is in heaven. My greatest pain was their greatest joy. I'm incredibly thankful for this promise. But I still miss them and it still hurts like crazy to be left behind.

"God must have needed them."

God is sovereign over the entire universe. He spoke this world into existence. He can calm the raging sea with his voice. Does he really "need" anything? What does he not already have?

"They were too beautiful for earth."

Are you saying that those on earth weren't beautiful enough for heaven? I'm confused. 

"You're young. I know you'll have lots more children."

I'd never tell someone who had lost a best friend, "Don't worry, you'll make more friends." No one will replace that one friend that you bonded with. Nothing will replace the memory that you had with them. Please don't say this to someone. More children may bring joy in the future, but they don't replace the heartache of watching a beloved child die in your arms. I won't even get into the issue of my struggle with infertility and how long I waited for this child...

You may have heard these words from someone who loves you. You may have said them yourselves. (I, too, realized I had said things like this in the past.) Although these words are hurtful, realize that most people had the purest of intentions. People care for you and wanted to take the pain away. It is okay to gently educate your friends in Camp #1. You have permission to tell them. Take a deep breath and gently say, "I really appreciate you trying to console me and it means so much to me that you care. It can be so hard to know what to say and those words aren't really encouraging right now..." These people love you. 


Camp #2: The Tiptoers

This camp is filled with people that love you so much that they want to protect you from any pain. The problem is, they can't. Pain has already entered your world.

They may tiptoe around you, as if you are a house of cards just waiting to crumble. They may be afraid to speak your loved ones name, for fear that you may fall apart. They may avoid eye contact with you when they see you coming. Or they may pretend as if your heartache does not exist because they do not want to make you feel uncomfortable. I was a member of this camp, before losing Ethan. I was so afraid of saying the right thing that I did not say anything at all. The tiptoers don't inflict pain, but they may make you feel somewhat like an awkward oddball when you just want to be treated like a normal person. 


Like those in Camp #1, this group also loves you. They care for you and do not want to see you hurting. They'd glue your heart back together if they could. 


Camp #3: Those that acknowledge the pain

I'm thankful to say that we know a lot of people in this camp. But I've talked to many hurting friends who have found this camp to be the smallest. These are the people that simply acknowledge the pain and offer their presence. They know how to lend a listening ear, without having to fix the situation. They make themselves available, without prying for information.  They may even provide you with advice, encouragement, or a scripture. But the key is that they acknowledge the pain. 
"I'm so sorry."
"I'm praying for you."
"You were on my heart today."
"I'm crying with you."
"This stinks. I wish I knew what to say."
"How are you doing?", without expectation of a detailed response, but being prepared if they want to give you one


Although these camps are all different, I've noticed a common thread that binds them all together. People in each of these camps love you. It breaks their heart to see you hurting. They have the very best of intentions. 


.   .   .   .   .


So back to your question; "What do I say? I don't even know where to begin."

Every heartache is different and I cannot speak for everyone. But for me, I have found that the best way to be there for a friend is to simply acknowledge their pain. Allow them to hurt. Oh yes, I know it breaks your heart to watch them hurt. I  know you would fix it if you could. But you can't. Only God can mend their broken heart. For now, simply love them and acknowledge their pain. Anything you say after that is okay. Even advice. 



Monday, September 14, 2015

You are not forgotten

Dear Hurting Heart,

I am writing to remind you of something very important. Something that I know that you know, but have forgotten in the midst of your heartache and despair. Something that you need to remember on the days when you ache. On the days when the rain begins to fall violently upon you, just when you thought that the sun was about to break through the clouds again.

You are not forgotten.

I need you remember this on the days when you feel angry. When you feel as if the whole world is out to get you. On the days when you ask, "Where is the hidden camera? Surely, this is not my life."

I need you to cling to this when you feel bitter. When you get caught in the dangerous snare of "why me". When you get caught in the net of comparison.

I need you to look to hold fast to this truth when you feel defeated. When you get knocked to the ground and stumble to regain your footing, as the world continues to move forward at rushing speeds.

I especially need you to remember this on the days that you feel worthless. Broken. Useless.

You are not forgotten.

God collects your tears. (Psalm 56:8)

As your heart breaks, he is near to you. You will face many afflictions, but he will deliver you from all of them. (Psalm 34:18-19)

You have been created in the image of God. (Genesis 1:27)

Before he formed you, God already knew you. (Jeremiah 1:5)

You were formed by God, intricately knitted together in your mother's womb. You are fearfully and wonderfully made. (Psalm 139:13-15)

You are so very precious to God. He knows you intimately. He knows how many hairs are on your head.  (Luke 12:6-7)

His steadfast love is as high as the heavens are from the earth, toward those who fear him. (Psalm 103:11)

God loved you so much that he sent his son Jesus to die for you...while you were still a sinner. (Romans 5:8)

God chose you for adoption. (Ephesians 1:5)

God lavishes his love on you. You are his precious child. (I John 3:1-2)

The angels rejoiced when you chose Jesus. (Luke 15:7)

Even if you are forsaken by the world, the Lord will never abandon you and will take you in. (Psalm 27:10)

If you have Christ, you are a conqueror. Nothing will separate you from the love of Christ! (Romans 8:37-39)

You can do all things through Christ's strength. (Philippians 4:13)

You are forgiven. (1 John 1:9)

You have been saved (Romans 9:9-10). You are covered by his grace. When God looks at you, He sees someone that has been justified and cleaned (1 Corinthians 6:11).

You are valuable. You are loved. You are of worth.

You are not forgotten.

With Love,
             Someone who needed to remind themself

. . . . . . . . . . . . .

To the reader that doesn't get this "Jesus thing":
Dear Friend, You may have stumbled across this blog and have a lot of questions. I understand, I still ask tons of questions. You may not understand that God loves you. I forget this at times too. Yes, no matter what you've done! Do you know that Jesus spent time with sinners? (Matthew 9:11-13). We all have sin in our lives. Since we've sinned, we deserve death; a perfect God cannot be near imperfection and sin. The good news is that Jesus Christ died in our place, so that we would not have to die for our sin. Our sin was a major debt that we could not possibly repay; Jesus came to pay that price in our place. Anyone who confesses that Jesus is Lord and believes that he raised from the dead will be saved. It is a free gift (Romans 6:23). Following Jesus does not mean that you will never have any problems. Jesus said that his followers would have many trials in this world, but not to worry- He has overcome the world (John 16:33). If you're searching, I encourage you to keep up with your search. Ask a friend. Do some research. Reach out. I'd love to talk to you more about this if you have questions. With love, Someone who once thought this seemed too good to be true

Saturday, September 12, 2015

27 years in 27 days


27 days.

It's been 27 days since I held my sweet Ethan in my arms. Since I nuzzled my face against his and breathed in his sweet baby scent. Since I stroked his soft cheeks with my fingertips and kissed his tiny lips. 

It's been 27 days since I met our sweet Ethan face to face. Since I was immediately convinced that love at first sight does exist. Since I caught a glimpse of unconditional love. A love that would have done anything for him...even trade my strong, beating heart for his fragile one.

In an heartbeat.

When I look back at that beautifully heartbreaking, devastatingly wonderful day, it feels like it was 27 years. Surely, I'm 27 years older. Surely, life has changed.

Looking back, I see a lifetime. A lifetime that has shifted my perspective on living. A lifetime that has taught me to love stronger. To shrug off the small stuff. To cling to Jesus. To look toward Heaven. To consider the fragility of life and the treasure of eternity that has been freely given to anyone who chooses to follow Jesus. A lifetime that made an impact on my heart, no matter how short it may have been.

Surely, 27 years have passed since I last held you. And I'd live through it all again for you. Your life, though short, was worth it.

Wednesday, September 9, 2015

I Have a Son

Small talk can be scary after the loss of a child. Chatting with someone at the store, meeting someone new at church...It's odd because I used to love meeting new people. Lately, the most innocent questions cause my heart to race.

Usually the conversation begins with a simple introduction, followed by standard get-to-know you questions.

What do you do? How long have you been doing that? Are you married?

Do you have any children?

This is the part where my breath gets sucked out of me and my mind races, desperately grasping for the correct answer.

I have two options. The first is to deny my child's existence. To hide him. To simply say "no" to avoid making people feel uncomfortable. To avoid opening up a vulnerable part of my life to someone new. Taking this road makes me feel like I am dishonoring my precious baby. It makes me feel guilty, as if I am ashamed of him. I just can't do it.

The second option is to tell the truth.

The answer is yes. Yes, I have a son named Ethan.

How old is he? 

Well you see, there is where it gets tricky. I'm an awkward situation just waiting to unfold in front of you. Soon, you'll be the one desperately grasping for words and I'll feel horrible for placing you in that position. I know I'll scare some people away with my answer. I do not want to, but I know I will. People are afraid of awkward situations (I'll be the first to admit that I am). But my hope is that my vulnerability will create a connection with some; We are all broken and sometimes vulnerability is all it takes to build a bridge.

Deep breath.

Yes, I have a son named Ethan. He was born last August and had the sweetest face. He lives in Heaven now, but I am so happy to know that I will see him again someday. Don't feel bad for asking. I love talking about him. Meeting him was one of the greatest joys I have ever experienced.

Monday, September 7, 2015

Grief and joy


"Was that hard for you?"

The question has been asked often in the last few weeks, usually following some sort of trigger. I don't mind the question. In fact, thank you for caring so much that you recognize the hurt and take the time to ask. 

Birth announcements. Someone bringing their new baby to an event. Being an observer to tiring conversations about sleep schedules, bottle feeding vs nursing, cloth vs disposal diapers. Someone I haven't seen in months asking if I had the baby...

"Was that hard for you?"

I've struggled to find the right answer. I could never quite articulate what I was thinking, until today. 

Yes. Everything is hard for me right now. 

Being at home can be hard.
Ethan's nursery is behind that closed door.

Going to the store is hard. 
There are newborns everywhere.

Walking past the baby section is hard.
Oh yeah, I still need to make those returns. What if the sales clerk asks why I'm making a return? Can I do this without turning into a blubbering mess? 

Even walking past the sporting goods store is hard.
Would he have preferred baseball or soccer?

Talking about going on vacation is hard. 
We already had our babymoon. Our next vacation was going to be with our baby. 

Planning for the holidays is hard. 
This was going to be baby's first Christmas.

Eating a sub sandwich is hard. (Yes, I had a major breakdown in Subway.)
I couldn't eat deli meat when I was pregnant with Ethan. Now I can eat whatever I want. 

Even losing weight is hard. Receiving complements about how "good" I look is hard. 
How have I already lost almost all of the baby weight? I don't want to go back to normal!

So the answer is yes. Yes, that was hard. But, everything is hard for me right now and it probably will be for a while, as God sews up the pieces of my shattered heart. 

It's not your fault. It's no ones fault. 

I don't say this so that you'll feel sorry for me. I've forgotten to mention the most beautiful part and that is JOY.

Psalm 30:5b “...weeping may stay for the night, but rejoicing comes in the morning.”

Matthew 11:28  “Come to me, all you who are weary and burdened, and I will give you rest.”
2 Corinthians 1:3-4  “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” 

Lamentations 3:31-33  “For no one is cast off by the Lord forever.  Though he brings grief, he will show compassion, so great is his unfailing love.  For he does not willingly bring affliction or grief to anyone.”
John 16:20b "...You will grieve, but your grief will turn to joy.

Can grief and joy live together? I say yes. I know it to be true for Jesus' death brought grief, but resulted in immeasurable joy when He conquered sin, rose again and offered redemption.We rarely consider the way that grief and joy can live together. Deep grief makes me appreciate the joy in life. It has changed my perspective. It has made me long for Heaven. It has shifted my focus from the world to eternity. It has realigned my priorities. It is refining. It heightens the feeling of joy. 

I cannot expect the world to stop for our grief...and I don't expect this. In fact, seeing life move on brings us hope. It hurts. Yes, oh yes, it hurts. But it also brings joy. 

I often find myself smiling with tears streaming down my face, as I talk about Ethan.

I cry when I see a newborn baby. My arms ache for Ethan. Yet new life makes me feel so much joy.

My heart beats fast when someone asks if we had our baby. Yet I enjoy taking the opportunity to share Ethan's story.

So yes, life is hard. Everything that life puts in front of me is going to be hard for a while. (Remember Subway? It's not your fault, it's definitely me.)

I'm rambling now so I'll wrap it up. I'm so thankful for a God who comforts. Who is sovereign. Who sees all things. Who cares for us even when we hurt so badly. Who brings joy in the darkness. 

I'm also thankful for friends. Friends who take the time to be there for us. We appreciate all of you. 

So much.

Tiny hands leaving a big handprint

Sweet Ethan,

Do you realize how many lives you've touched? Do you know much your life has been used to encourage Daddy and I? Sure, it's been so very very very hard without you here...but Jesus has used your life to spur us to pray, to trust, to communicate, to grieve and to hope. You may have been small, but you're leaving a big handprint.

We love you and we miss you so, sweet Ethan. We long for the day when we'll see you again.

Love,
Mommy


A letter to Ethan


Sweet Ethan, 

You used to wake me up every morning at 3:30am with your little kicks and wiggles. I used to lay awake and just smile and marvel at the miracle growing inside of me. Now that you're gone, I wake up at 3:30 almost every night. This morning I woke at 3:30 and thought of you. 

It's been three weeks since you went to Heaven and Daddy and I are missing you like crazy. I have no regrets over you, sweet baby. If someone had told me months ago about what was coming, I still would've gone through everything. I would've happily endured every queasy morning, the horrible week that we learned that you may have a hard road ahead of you and how much it deeply hurt me to hear others suggest we give up on you, the fears, the backaches, laboring you to 8cm (you speedy boy!), another emergency c-section, the physical pain, the slow recovery, the heartache of losing you, the unlimited tears we've cried over you, just to meet you. 

It's been so hard sweet boy. But I'd do it all again for you. Just for an hour with you.

They say you fall in love so quickly when you first hold your child and they are right. The bond began forming the moment we learned you were coming, and the moment we saw you we never wanted more. You were worth every minute. 

I'm so grateful for the 93 minutes we got to hold you, before you went to Heaven. They were the happiest moments of my life. When the doctors told Daddy and I that you were not going to stay with us, we were devastated. We wanted you to stay with us forever. We cried so much. But my sweet son, some of those tears were tears of joy. Meeting you was amazing. The love we felt for you was overwhelming. 

We won't be afraid to talk about you, baby. We'll gladly tell anyone who asks about our sweet son. Your future siblings will hear stories about you. Your photo will hang with the others. No one will ever replace you. You'll always be our little love. We love you more than words on earth can begin to say. 

You've changed our world forever.

Love always,
Mommy