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