Monday, May 21, 2007

10 days ago my whole world changed...

11 days ago I was a wife and mother to three, expecting a fourth child in October. I had the next year or so planned, how we work things out over the summer season and how our daily schedules would jive with a newborn come the fall...

11 days ago I made an appointment for a followup ultrasound. I had some irregular pre-natal testing and my doctor seemed most convinced I was having multiples or my dates were way off... I had no idea what could possibly go wrong. I am low risk for every anomaly that I had been tested for. So 11 days ago I started preparing myself for the possibility of twins.

10 days ago I walked into an overcrowded waiting room and everything changed.

By the time I'd met with the genetic counselor I knew something *could* be wrong. I still didn't expect it to be. I consented to an amniocentesis, in case I needed one to further clarify ultrasound results. I didn't even do that amnio. The Dr performing the ultrasound took a quick peek and then started talking about moving me to a different room to see more clearly... she also started whispering with the nurse about how I wouldn't need the amnio and I felt relived. I made a joke about not really wanting one anyway. The Dr. Turned to me and said "Oh, I've already seen the anomaly and it is very clear without the amnio. That's why I'm moving you to the next room, so you will see it better. But i have to finish with a patient in there." and she left.

In that instant everything went haywire. Something was wrong with my baby... and I was left to wonder for what seemed like an eternity, but was in reality only a few minutes , what could possibly be wrong. I wondered what kind of special care my child might need.

When they transferred me over to the next room and squirted more warm jelly on my stomach the Dr, I hadn't caught her name, I think she told me but I missed it entirely, anyway, she proceeded to measure things like leg bones, heart valves...beautifully beating heart valves... and various other body parts. The whole time she did this I searched for anything that looked misshapen or wrong. Finally she told me what had happened to my child... it's skull hadn't fused and the brain had never developed fully. There was a brain stem but little to no fore brain... the part of your brain that basically makes you a person. I was stunned.

She then, proceeded to explain that the baby I was carrying would likely not survive pregnancy, and had little chance of lasting even an hour after birth. She gave me technical terms and prognosis, and whys... but all I heard was my baby wasn't going to live. After she had explained all this, had told me all the various reasons "termination" was suggested, she asked me if I had any other questions... "Is it a boy or girl?" She seemed surprised I wanted to know but confirmed what I thought I'd seen a few weeks earlier in a different ultrasound..."A girl".

I walked out of that office with everything in my head swirling... I had to tel my husband, I had to tell my two oldest children, I had to get home, I had to make decisions. I knew only one thing, I knew her name... Eden Rebekah had just been given a terminal prognosis.

As a Christian, and actually even before I ever accepted the Truth of Jesus as My Savior, I had always held firmly to the belief that life begins the moment a sperm meets egg. You may not agree, I'm not asking you too. This is not the place for that argument. I never thought there was a moment the switch flipped. I also didn't think it was the "right" of anyone to end that life. I knew there were exceptions... ectopic pregnancies need to be ended, if a mother's life is jeopardised... I was pretty sure those were the exceptions. But now, here was this whole new, and vast, and murky grey area I never knew existed. My baby, my baby can not live outside my body. Not now, not 22 weeks from now. Not ever.

So my husband and I were faced with some enormous realities and even bigger decisions.

We prayed for discernment and we prayed for hope. We prayed for miraculous healing for our baby. We felt lost. We felt we'd lost her already.

We did decide to have a confirmation ultrasound, you can't do something this enormous without a second opinion. The confirmation was just that, confirmation. No skull, no brain... but a beating heart.

We cried and consulted my wonderful OB. The options she laid out were termination or carrying the baby, knowing all along she wouldn't survive. I imagined 5 more months of that kind of pain, I wondered what I would do if any of my three older children were on life support with no hope of survival... I would let them go. We decided to let Eden go... my heart broke at the thought but it seemed right... or as right as things could seem.

All this time I had friends and church family pulling for a miracle. Praying and holding my family up. One friend told me that on that Sunday (two days before the confirmation) that God had revealed to her that Steven and I were like Moses who couldn't hold our arms up on our own to fight this battle but that she and others were being like Aaron and Hur, holding us up. (Exodus 17: 8-12)

So Tuesday we decided that we would make the heartbreaking decision to end the pregnancy. I was broken at the thought. My dr said she would call with the information that day... and that day the information didn't come, nor did it come the next day. Finally I called on Thursday, after my husband had returned to work. He'd taken off that Monday through Wednesday... I wrote the information on a pad of paper on my desk... I didn't call.

Friday came and went... I didn't call. And for the first time in a week I felt like I could breathe.

Saturday I talked to my husband and we decided to wait until this busy time at work was passed to make the appointment... and again I felt like I could breathe. I even went to a wedding reception and had a good time. My first real outing since this whole thing began.

A good friend of mine said to me on Friday "I'm just worried about you. I don't know how you will live with having made this decision." It wasn't said in judgement or to sway me. It was said in love. And I realized in that moment, I couldn't. I had begun to beg God, not for healing but for a miscarriage. I realized the terror I had at facing such a difficult choice. Even if my daughter has no conscious thought, can not feel pain, will never be whole, I can't make a choice to end her life.

Yesterday was Sunday, it was the first Sunday back at church, just nine days after the initial diagnosis. Service always starts with a time of singing and worshiping God with Song. My husband plays flute with the worship team and I sit with the kids. I had barely made it though the first song when my hear began to overflow with love and praise for my savior. Yes, this all sucks, but God is still God. he still created the heavens and the earth. He will still cause good to come from this. It is an accordance with his promise in Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" I began to raise my hands in surrender to Him and at that moment I remembered the words of my friend a week earlier, about being able to hold my own hands up. I sang out to a song which said ...

Lord reign in me
Reign in your power
Over all my dreams
In my darkest hour
You are the Lord of all I am
So won't you reign in me again
Over every thought
Over every word
May my life reflect the beauty of my Lord
'Cause you mean more to me than any Earthly thing
So won't you reign in me again
I have sung this song a million times in my Christian life, but this was the first time i understood what it was to ask God to have his way over "every dream" in "my darkest hour". Because this hour...this hour is dark and I do have dreams.
We had a missionary couple speak and very briefly did they mention this one thing. Jesus as Healer. They said something to the effect that when we "proclaim Jesus as healer" we have done our part. He then does his part...He does the healing.
Later, after service, I did go forward for special prayer... as my pastor explained to the couple the story of my sweet baby, I sensed a brokenness in him. I grew up with his daughter, spent much of my teens in his house, and I could see that this was hard for him as well as for me. As he explained Eden's missing skull and brain the female missionary simply said "Is no problem." With such authority, such faith. They prayed for me, for Eden, and for my family. They prayed that she be "whole" they Declared her as whole and prayed peace for my husband and I.
Up until this point I hadn't yet talked to Steven about my desire to carry the baby until God brought a natural end. It wasn't even because I expected a miracle, I just didn't feel right about the choice.
On the way out to lunch after service we began to speak about the prayers of the couple, the words of encouragement from our church family, and where our hearts were leading. It came as a great relief to me to have Him agree with waiting indefinitely.
It's hard to explain but I am both fully confident God will heal Eden, and fully confident that if He doesn't this is the right choice.
I imagine being able to call my mother from the hospital and tell her of her healthy granddaughter. Of God's grace and mercy and his miracles. I wonder what challenges will come with parenting a child whom God has used like this. Asking God, just this morning, that i would have wisdom with parenting her. And then in the same moment preparing my heart to say goodbye, again.
This morning, as if to confirm what was happening in my heart I received this email...
In Daniel 3, there is the common story of Shadrach, Meshach, and Abednego. King Nebuchadnezzar throws them into a burning fire for not bowing down to his gods. In Daniel 3: 16-18 the three God followers reply, "O Nebuchadnezzar, we do not need to defend ourselves before you. I f we are thrown into the blazing furnace, the God whom we serve is able to save us. He will rescue us from your powers, Your Majesty. But even if he doesn't, Your Majesty can be sure that we will never serve your gods or worship the gold statue you have set up."

I am sure you are familiar with the story. In the bible study the three God followers thought of two options that God would move in their troubling situation. Scenario A: We can be delivered from the fire. Or scenario B: We can be delivered by the fire into His arms. But the message talked about another solution. A way that God moves that catches us off guard. Something that shows us that He is the one in control, and He knew the whole time. Instead, scenario C happened: They were delivered through the fire. The story is that God met them in the fire. He kept them safe, that even though they were tied up so that they could not shield themselves they were not hurt. In fact in the end as they were called out of the fire it was recalled by the King that they didn't even smell of smoke.

Sometimes I would like to tell God that I only want him to deliver me from the fire. I don't really want to go through any pain or anxiety. I pray so much that God will help you that way. I pray so much that God would heal your little baby like he healed the women who was hemorrhaging. She had so much faith that she knew if she just touched the hem of his garment she would be healed. I don't know if I have that much faith, but I pray that God will do it for you. I pray that God will touch that head that is rested in you and bring it whole. But sometimes God works other ways either delivering that baby into His arms or delivering us through the fire. I wish I knew


Mommy™ said...


I'm so heartened to hear of the peace and hope you have found :-)

Krista said...

Alexis, your strength and grace are so compelling. I'm so choked up reading about Eden, but I believe, also, that we serve a God of miracles. I'm so thankful he has given you peace and even joy in your spirit. I will continue to also lift you up to the throne of grace. You are never alone. (((hugs)))

Denise said...

hey Alexis,

I love you, and I am praying for you.

Nicole said...

My dear friend sent me the link to your page. Your story has truly touched me. As a mother of 2 I can imagine myself asking the same questions, if we were faced with this situation. Your words expressed so eloquently your emotions and thoughts that I felt your pain. Our prayers are with you and God ABSOLUTELY has a plan. I pray for God's strength and peace. In your time of deepest pain, you are an encouragement.

lovely said...

Hello. My name is Teresa, I am Amy Cherbony's sister.
Amy phoned and emailed me about your situation and read your blog posting. please know that I'm sincerely earnestly praying for a complete healing for Eden Rebekah and you. I'm praying for your husband and other children as well.
May God who is faithful to hear and answer our prayers grant you strength, hope, love, grace, peace, wisdom, and divine healing.
You and Eden Rebekah will be forever in my heart, thoughts, and prayers.
Love in Christ,

Anonymous said...

Much love and many prayers to you and your family, Alexis. I am so glad you are at peace now and you know you've made the right decision.


Terri said...

Alexis, don't be anxious about anything, but in everything by prayers and petitions, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your heart and your mind in Christ Jesus. (Phil.4:6-7) You have made a courageous stand, one that is already bringing much glory to God. Remember, those who honor the Lord, He will also honor.

Dave and Lindsey said...

Alexis and Steve - when we heard about baby Eden we began praying and seeking Him on her and your family's behalf. We felt such pain as we prayed but yet, we felt this so strongly, that any decision regarding this "little one" was God's decision! He created her from you and Steve and "was being formed in secret" by Him and Him alone in the sanctuary inside you! Our prayers will continue for Eden, you and Steve, your family - and we will pray for His will be done! We are praying for a mighty testimony to arise for so many - from the medical staff - to your unsaved family - to all of us! To God Be The Glory; Great Things He Hath Done!

danielle said...

Alexis, I want you to know that God has sent your message around the globe and prayers are being lifted for you and your family in England! God is above all things our Father of love; Abba Daddy. May His strong daddy arms keep you surrounded during this time. Romans 8:28 says He uses all things for our good. Praise You Father for that. Blessings to you from the UK and a fellow sister in Christ, Danielle.

Lorrie Prothero said...

I"m wondering if God might be using your daughter to save someone else's life. Could she possibly be a donor?

SOUL said...

Xo. I have faced this decision. The feelings. The fear. All of it. ' Trisomy 13' was my Jacobs diagnosis, before it had a name. Before there was a home internet to research on. All these years later.... It is a decision i wish i never had to make. But, with God, it was made.