Tuesday, October 30, 2012

How Do You Mend a Broken Heart?

The last few days, I have been plagued with the notion of having to break the news of Leila's condition to my five year old son, Dallas. The words have bubbled up multiple times, but I never could quite get them out. Every time I got close, I stopped myself because I knew the constant smile on his face would quickly fade and I just couldn't bear to see that happen.

As I type, my sweet little boy is sitting next to me in bed drawing pictures for his little sister. Intermittently, he stops to come hug my belly and cry. During a quiet moment tonight, I told him that when Leila is born, she'll be joining God in heaven to watch over us. I could see the thoughts processing in his eyes before the tears began to run. My heart broke into a million pieces for him. I never ever want to see him hurting, and tonight, I caused his hurt. I could have put it off for another night. How I wish I could have put it off forever.

Through the tears, the questions started to come. Will she not come to daycare with me? Will she not sleep in my room? Why didn't God want me as an angel and only her? Will we ever have another baby? Will she die too? I did my best to handle each question with care, and we held each other and cried for nearly forty five minutes. He just kept repeating "This is the worst thing ever. I don't want her to go to heaven yet"...

Once he settled down a bit, I explained that we can talk to her at while she's in my belly, and after she's in heaven. That we can make memories on the day she is born, and take lots of pictures to frame and put in his room so she is always with him. I asked him if there was anything special he'd like to do for her in the meantime, and he responded with "I want to draw her a picture". This is what he came up with:

I thought it was so lovely that the first thing that came to mind was a rainbow. A beautiful natural wonder that shines even through the rain and clouds. That's what he is to me. Through all of the negative that he has endured in his short time, he pushes through and sees beauty. I'm so proud that I've raised a sensitive, strong, smart and caring little boy. I'm so proud to be his mother.

Monday, October 29, 2012

If Dreams Came True

Last night, I had my first dream about Leila. Fueled by fever and Ambien, it seemed to last all night and I remember every detail. I went into labor naturally, and when she was born, she looked just like a healthy baby. Her tiny little features were perfect in every way. She had beautiful dark hair, just like the meaning of her name. She wore a white hat with a pink butterfly, just like the one made for her in reality. She wore only a blanket. She wiggled, and when she cried for the first time, my heart jumped out of my chest. We never expected to hear her cry.

I remember struggling with whether to take her hat off and look underneath. Every time the hat crept up, I would pull it back down out of fear. I didn't want to see her in any way other than the lovely little girl I saw in front of me at that moment. Will decided to look first, and we were shocked to see that her head was perfectly round with the exception of one side. We could see that she did not have anything inside, yet she was behaving like a newborn baby would. She looked at us, she cried, and ate. I truly felt like she had beat the odds. Friends came to visit, hundreds of photos were taken while she was happily passed around. My mother was alive in my dream, and she posted on Facebook about being a proud Grandma. Through the course of the dream, which was only a matter of one day, Leila grew, walked and talked. All of this felt normal of course, because dreams, no matter how bizarre, always seem to make sense while they're happening. We sent friends to buy her clothes because we were unprepared for her to live as long as she did. We walked with her through the hospital, and I even took her for a ride in the car.

I dreaded the night time, which was approaching quickly. I didn't want to sleep. I didn't want her to sleep. I was so afraid that with one blink, she would be gone.

Before we could get there, I woke up to my alarm. I was overcome with such a strange, sad feeling. My stomach was very unsettled. I realized that my dream was exactly how I wish her birth would be. She'd prove everyone wrong, and thrive regardless of her condition. My unsettled feeling was the result of knowing that possibility is just way too small for my liking. For the first time, I'm feeling scared for her arrival because it means she'll be leaving us. No matter how much I remind myself to be grateful for any time with her that we can get, it will never be enough. If a minute turns into an hour, I will want it to turn into a day. A day into a week. A week into a month and a month into forever. That's how is should be. That's how we planned it.

I'm going to let today be a bad day, because I've been blessed with mostly "okay days" in the last week, and I know they will return. In the meantime, I'll keep praying for a miracle, and for peace in my heart.

Sunday, October 28, 2012

We Walk By Faith...

It's a difficult thing, to believe what we can't see. You want to convince me that something is real? I'll ask you to show me proof. Today, I attended a new church for the first time, and today, I saw proof of three things that cannot be materialized: God, love and real faith.

Through this blog and my dear friend Kelli, the whole congregation knew who I was. Word had been spread by caring hearts and we were immediately welcomed. Multiple people approached me and asked "Are you Leila's mommy?", followed by great big hugs and thanks for sharing our journey. I knew Leila's story had touched lives, but what I didn't realize was the abounding love that people who have never even met us have for her. One person in particular was more excited to see me than anyone; Pastor Brian, a man with an infectious smile, a wonderful sense of humor, no shoes and true faith in Christ.

The subject of his sermon today was Walking with God. The message being spoken was about how God is not looking for you to sacrifice for him, to be a selfless servant. All God wants is a relationship with you. For you to have faith in Him and trust your life to Him. Through the horrible realities of our situation, it has been a goal of mine to allow my faith to evolve. In the past, I have felt silly speaking out loud to something that is not there, even in private. Prayer didn't make much sense to me. During reflection time, Brian asked if we could pray together. We sat while the choir sang and with one hand on my belly and the other holding mine tight, he spoke loudly to God. He asked Him to hold Leila in his arms, to prove the doctors wrong and be well, to walk with me as I carry her and bring us peace. Tears poured from everyone around us and I truly felt the presence of Lord through him. To witness his raw belief in the power of prayer was pretty amazing, and I felt very lucky to be the subject of his requests. To me, this was proof enough that although I cannot seem Him, God is there for me and His love is delivered through those around us that believe.

Today, I pray for the families that are walking this same road now, those who have walked it in the past, and those who will sadly be faced with walking it in the future. I pray for those who are keeping us in their hearts and thoughts. I pray for myself, that my relationship with Christ continues to develop and to let Him act through me. Most of all, I pray for my little girl. I pray that she may keep teaching me these daily lessons and continue to show me the realities of faith and unconditional love.

Friday, October 26, 2012

Belly Love

I find that most days, my sadness overshadows the fact that I'm building a little person in my belly! I've been reminded by a dear friend to enjoy every minute of my pregnancy, because I will love looking back and remembering what a joy it really was to carry Leila for as long as I could. This got me looking at my belly pictures and ultrasound photos and really feeling thankful to have the time that I do with her.

The strange food choices, the morning sickness, and hormonal rampages, the mystery of how my butt continues to widen but I don't put on a pound... I'm learning to consider these all blessings, because they are sure signs that I am in the process of making a person! And a beautiful one, at that. One that has touched so many hearts and lives, and will continue to do so forever.

Thursday, October 25, 2012

Counting my Blessings

I wanted to take a moment to give some "Thank Yous" to organizations and people that we have truly been blessed to call our friends, and have been so gracious and caring towards Leila and our family. Unfortunately, I will not have enough time or space to call out each individual that has touched our hearts, as there have been so many, but please join me in thanking the following folks for their love:

Our Friends: Old and New: It has been truly amazing, the amount of people coming forward to hold our hands. Friends we see regularly, friends we haven't seen in years, and new friends that God has brought to us through this blog, Facebook, and other resources I have connected with for support. A special thank you to the other mothers of angels that have been so willing to share their pain, grief, love and hope with me. Also, to my dear friends that have continued to share this blog, allowing me to reach other families in need of support. I have learned so much about what it means to have a kind heart, and I want to thank each and every person that has taken the time to say "I love you, I'm here for you, what can I do?". The acts of kindness we have experienced in a three week period have been more than I'd ask for in a lifetime. We are an incredibly lucky family to be surrounded by all of you, and although my words will never be enough: THANK YOU.

Women's Healthcare Associates: What an amazing group of people in this office. My doctor, Drea Olmstead, has been my number one fan since Leila's diagnosis. She has cried with me, mourned with me, held my hands, and supported each decision I have made. She has made the utmost effort to keep in constant contact with me, immediately returning calls when I need her, and taking extra steps to find answers to difficult questions for me. The nurses in the Tualatin office of WHA have been so sensitive towards me, making sure I'm comfortable in the office while I'm there. It's apparent to me that they truly care about us and I will be forever grateful that I chose them for my prenatal care.


Crochet Sisters: Crochet Sisters is an organization committed to providing handmade hats to anencephalic babies, and was founded by Kayla Surber in memory of Brayden Michael, her nephew. Brayden earned his wings on February 6, 2012 and Kayla searched for and found a way to help other families facing this tragic diagnosis. What a wonderful way help other mothers and babies, and honor beautiful Brayden. These are the custom hats she made for our Leila:


Carrying Colin: I found this site shortly after our diagnosis, and immediately found comfort in this family's strength and courage. Joanna, Colin's mother, was kind enough to reply to me personally after I reached out, even in the midst of preparing just two days before their son's arrival, and offer her friendship. Joanna and Brian brought Colin into the world in the early hours of October 23rd, 2012 and were courageous enough to share their entire experience with the world via their Facebook page (https://www.facebook.com/carryingcolin). Colin is a beautiful baby, and now a beautiful angel.

Joanna and Brian have founded "Puzzle Piece", to assist families of anencephalic angels. Please check out their page, and click "How to Help" to learn more.


GOD: Not a person. Not an organization. A lifeline, and my savior. My relationship with God has been a rocky one, but when I found myself completely lost on the 8th of October, I handed my life back to Him. I have been praying constantly for peace, for healing, for our family, for the people who care for us. You know the great thing about prayer? You can do it anywhere! You don't need a babysitter, you don't need money, you can't say that about much these days! He will always listen. So, here's to YOU, God. You'll never fail me, and even though I may question your intentions from time to time, THANK YOU for choosing us as your beautiful angel's parents. We'll do our best to live up to the title.

Tuesday, October 23, 2012

My Angel on Earth

Yesterday afternoon, I had a routine check-in with my obstetrician. It was my first visit to the office since the confirmation of Leila's diagnosis. The anxious feeling I got walking into the waiting room was overwhelming. All of the pregnant women around me, new babies cooing and crying, unaware office assistants asking me if this was my "post-partum appointment", assuming that I terminated my pregnancy after the diagnosis... it was like a trip into the twilight zone. I felt like a fish completely out of water, like I didn't belong there anymore.

My subsequent visits to that office will not be like those of a woman carrying a healthy baby. To me, it seems they will be more like counseling than medical appointments. We discussed timing my appointments around the slowest times of day so I wouldn't have to be surrounded by reminders that I'm not like the rest of the women in that waiting room. We discussed that there is no need for a glucose test, a strep test, or any of the like. We discussed delivery options, and how if I chose a vaginal delivery, they would not need to monitor Leila's heart in the process. I was prescribed more medications for anxiety, depression and sleeplessness, medications that would not be so easily handed out if I were carrying a healthy baby. My heart was crumbling, piece by piece, at each reminder that my pregnancy won't be treated like everyone else's. We listened to her heart beat. It was as strong as it ever has been.

Then came the conversation about organ donation. Since being informed of Leila's fate, I have thought a lot about this subject. I have researched and I have come across contradicting articles, some saying anencephalic babies are not suitable donors, and some saying there is hope. There are medical and legal issues that come into play, mostly concerning the definition of "brain dead" and whether anencephalic babies can ever be placed in that category. There are concerns of the properly functioning organs dying as the brain stem begins to cease. In most cases (and there have been few), anencephalic babies who are deemed worthy of donating are placed on life support in order to preserve those organs for the recipient. This would mean our time with her would be less than if we were to let her pass naturally, and this is only if she is born alive. There is still a great possibility of stillbirth. That was a tough bite to swallow. Potentially giving life to another child would mean me letting go of mine sooner, and even so, the chances of her being a suitable donor are slim. I pray that as I wait for my OB to discuss our situation with the Organ Transplant Team at OHSU, that I can find peace in either outcome, knowing Leila could save a life, and also that it just may not be an option. I will keep you all posted as more information comes my way.

As I left the office, rather than anxiety and sadness, I felt surprisingly calm. I realized that although I may not be the "normal" pregnant woman, anticipating her due date with a nursery full of stuffed animals and plush furniture, me and my baby are special. I have something no one else in that office has: I am carrying an angel, and one that could potentially give life after hers is over. To me, she is worth every emotion that I will feel over the next four months, and beyond, and I am thankful every day for the lessons she is teaching me. Lessons about compassion, about understanding, and of unconditional love.

I asked God for a flower,
He gave me a bouquet.
I asked God for a minute,
He gave me a day.
I asked God for true love,
He gave me that too.
I asked God for an angel,
and He gave me you.

Sunday, October 21, 2012

Monsters or Miracles?

Disclaimer: This is more "rant" style than any of my other entries. There may be people reading this blog that feel the same way as the man I am about to quote below. Before you read, I'd like to kindly ask those of who feel this way to refrain from sharing those opinions. This situation is incredibly sensitive for me, and I am not looking to be swayed in my decision. This blog is for me to share my feelings, fears and thoughts, and I'd like to keep it that way without turning it into a debate forum. I thank you sincerely for respecting my feelings on this.

The Internet can be a wonderful thing. It allows us to stay in contact with family and friends around the world. We can meet new people with similar interests in online groups and clubs. Information on any topic is literally at our fingertips. What do you do when you have a question, about virtually anything? Google it.

I am a researcher. I am interested in absorbing as much knowledge as I can about topics that affect me and my life (except politics... I really couldn't care less so I choose to ignore it). These last two weeks, the Internet has been my lifeline. It was given me the ability to reach other mothers that have been through the hell of a poor prenatal diagnosis, and it has allowed me to pick up every bit of information about Leila's condition that I possibly can.

With my incessant longing for more knowledge, I've also come across the ugly side of the Internet. The bullies, the bashers, and in my particular situation, those who believe my baby is a "thing" and doesn't deserve to be carried with the possibility of being born living. On one blog, which discussed the topic of whether to abort a pregnancy with the diagnosis of Anencephaly or carry to term regardless, what I would consider a very ugly person wrote the following:

"You do know that any infant born with Anencephaly will never live a full life, right?! In the hefty case of anencephaly, I would strongly suggest an abortion before the "child" can be born. Anencephalic newborns almost always cannot hear, see, taste, smell, or feel pain, because THEY ARE BORN WITHOUT A FULLY FUNCTIONING BRAIN. I can only imagine the sheer terror, disbelief, disgust and sorrow that anyone has had to go through when giving birth to an Anencephalic baby. They just look like such vile creatures, and to call these things "fully-functioning children" is just wishful thinking. These newborns usually die within 24 hours after birth. Also, just looking at the baby with its exposed brain and bugged-out eyes makes me want to vomit... have a nice day."

Ouch. When I read those words, I felt like someone grabbed my stomach and twisted it into a knot. The first part of his statement is true: Anencephalic babies will indeed never live a full life, the majority do not have senses or feel pain, and they are born without a fully functioning brain, if any brain at all. But to call my sweet baby a "vile creature that makes you want to vomit"? To assume that when I give birth to my daughter, that I will be disgusted and terrified by her? Are these babies monsters? Are they so horrid and ugly that they don't deserve as long of a life as possible? Are they like injured horses that need be shot because they are of no use anymore?

I do understand the choice to terminate. I really do, and I would never judge a woman for making this choice. What I am fairly certain of is this: a mother that chooses to end her pregnancy early is not doing it out of fear of what her child will look like. She is doing it preserve herself, her mental and physical health, to allow her child to go to heaven sooner so as not to prolong the inevitable, and begin to heal. These mothers love their children just the same, but out of the two incredibly difficult choices (ones that I pray none of you ever have to make), they chose one road while some of us choose the other. Neither is wrong. Neither deserve such ugly, hateful arguments against them.

In conclusion, I want to respond to the gentleman I've quoted here in my blog rather than the forum where it was originally posted, because I like to avoid conflict. He doesn't have to see my response, and I don't have to deal with the backlash of his subsequent rants. I can still get it out in writing, and sleep soundly tonight knowing that I spoke my peace:

A BIG FAT MIDDLE FINGER TO YOU, SIR. Does it disgust you to look at yourself in the mirror? Because your moral deformities are horrifying. Do you feel that children born with physical abnormalities that are given the opportunity to life full lives are ugly and vile and that their parents are disgusted with them? My daughter may not look like a normal infant, but she is beautiful to me and to all the many people that love her. I will look past her imperfections and see the life I created with the man I love and be proud to say I gave her as much of that life as God allowed. I will see the life of a little girl that has touched so many people in her short time with us, and I will be thankful that I did not take that life away before it was her time. Do you see a term that has been repeated in this response multiple times? Life. She has been given one, regardless of how brief it may be and how different she may look. She's a miracle. Have a nice day.

Friday, October 19, 2012

The Importance of Kindness

I've felt overwhelming support from many people over the last two weeks. People I barely know, friends I haven't had much interaction with in years, colleagues, and of course those I speak to and see frequently. Everyone who has heard our story has come together to blanket us in comfort, and it has been a true testament of what kindness looks like. We've received gifts for Leila, prayers, flowers, offers to make meals and help clean the house. All things that we might have a hard time accepting because of pride, but are learning to welcome because let's face it: sometimes you need help! And it's utterly awesome the amount of people that are willing to extend a hand.

But what about those who are unaware? Those who unintentionally trigger the negative feelings to come back, who have no idea the level of stress, sadness or heartache you may be experiencing that day. How about those who may make a rude comment, flip you off in traffic, roll their eyes at the screaming child in your grocery cart. Those who, for a split second, you want to grab and shake and scream, "what are you thinking, talking to me like that right now!", before snapping out of it and realizing they don't know any better.

Obviously I'm referring to my experience in the last two weeks, and other times in my life when I've walked around with an imaginary dark cloud hovering over me and expected everyone around me to see it. Reality is: they don't... thinking about it now, I've been that person many times, especially recently with hormones and tensions running high. The one who wants to make that rude comment, or flip that driver off. Problem is, I'm blind to what is happening in the lives of others, especially those I don't know. The girl at the register that doesn't really seem to know what she's doing when I'm in a hurry to get to work must be new, or careless and stupid. The guy swerving through traffic and cutting off everyone in his path must just be some jerk who doesn't want to wait his turn. The woman consoling her screaming son at the store but can't seem to calm him down is obviously a bad parent for coddling rather than disciplining her child.

What I'd like to ask of everyone reading is this: next time you find yourself in a situation where you want to jump the gun and call someone out for not being the perfect human being you want them to be, remember; that girl at the register may have her mind on her sick mother, who's at home waiting for her daughter to get off the late shift and bring her dinner and medicine. That inconsiderate driver may have a little boy in the back seat that just broke his arm jumping on a trampoline, desperately trying to get to the ER in the throes of rush hour traffic. That woman attempting to get her child's emotions in check in the "Canned Foods" aisle may be fighting a battle with autism, and has a child that needs her love more than her frustration. Be kind. Try to bite your tongue if you can feel the negativity bubbling, or even offer to lend a hand if you can. Someday you may need someone to do the same for you.

Thursday, October 18, 2012

God's Loan

I'll Lend You a Child

By Edgar Guest

"I'll lend you for a little time
a child of mine," He said.
For you to love, while she lives
and mourn for when she's dead.

It may be six or seven years
or twenty-two or three
but will you, till I call her back,
take care of her for me?

She'll bring her smiles to gladden you
and should her stay be brief
you'll have her lovely memories
as solace for your grief.

I cannot promise she will stay,
since all from earth return,
but there are lessons taught down there
I want this child to learn.

I've looked this world over
in search of teachers true,
and from the throngs that crowd life's lanes
I have selected you.

Now will you give her all your love,
nor count the labor vain,
nor hate me when I come to call
to take her back again?

I fancied that I heard them say,
"Dear Lord, thy will be done,"
for all the joy this child shall bring,
the risk of grief we'll run.

We'll shelter her with tenderness,
we'll love her while we may,
and for the happiness we've known,
forever grateful stay.

But should the angels call for her
much sooner than we've planned,
we'll brave the bitter grief that comes,
and try to understand.

This poem was sent to me by a friend relaying the message for a friend who came across this blog. I wanted to share because, although heartwrenching, it's comforting and beautiful. It's amazing, the hearts of perfect strangers reaching out during trying times. Thank you, whoever you are. <3

Wednesday, October 17, 2012

Judge Not, Lest Ye Be Judged

"No one truly knows what they will do in a certain situation until they are actually in it. It's very easy to judge someone else's actions by what you assume your own would be, if you were in their shoes. But we only know what we think we would do, not what we would do.” - Ashly Lorenzana

I've always considered myself a fairly non-judgemental person, from the time I was young. People are given the ability to make their own choices for a reason. Choices are personal. Some are very difficult, and some very controversial, but personal nonetheless. I've experienced a bit the scenario referred to in the quote above lately, and what's ironic is that I'm now sitting here judging them for judging me. For having opinions, and feeling the need to share them at what I would consider an inappropriate time. Will and I have been faced with an obstacle that not many are faced with, although there are many different ways one may lose a child; miscarriage, stillbirth, illness, SIDS, all equally devastating but incredibly different experiences. Will and I have been given the blessing and curse of being informed of our child's impending journey to heaven. We've been offered the ability to cope and prepare before the time comes, but with that ability comes the fact that we are also sadly counting the days we have left with our little girl and knowing they will be far too few. The choices we've made regarding how we will handle the path we're walking are ones that we are sound with, after discussions with each other, our pastor, and God. I know I don't owe anyone an explanation for making these choices, but I know people have questions they are afraid to ask out of respect for us, so here are some short answers to some we know people are curious about (believe me, I'd be curious too if I wasn't in my shoes):

"Why continue to carry? Why not get it over with?" - Carrying her to term allows us as much time as possible with her thriving. We don't look at is as something we want to "get over with". We'd keep her safe and warm in my belly forever if we could. God has chosen for her to survive this long, when many of these babies miscarry early on, and we don't feel it's our choice to close the door on a life that is still living. Continuing to carry may also allow us to be donors by letting Leila's little body continue to develop healthfully as it is and give another baby a chance at life once she has passed on (although, there is some legal and medical controversy surrounding this, but that's another blog for another day). I have also read numerous stories of anencephalic babies living days, weeks, even months, albeit rare, I wouldn't feel right denying her the possibility of potentially being one of those miracles.

"Why have you chosen a c-section? It is risky and you may never be able to have a natural delivery again" - Natural deliveries of anencephalic babies can be incredibly difficult ones. Leila does not possess the piece of the brain (the pituitary gland) that allows her to trigger and participate in labor. Even with induction drugs, these labors can last days and days and be very traumatic for both mother and baby. Delivering Leila by c-section gives her a greater chance of surviving birth, and without physical trauma.

"Why are you questioning God? He has a reason for everything. Hating him is not going to make things any better" - Questioning God is a natural reaction when grieving. As Pastor Alex said, "If you weren't angry with God, I would be questioning you. Roll down your window and let him have it. Know that He understands, and He will be there when you're ready to take Him back". Let me be clear: I do not hate God. My faith has actually grown stronger, and I've leaned in to God to help me find a way through this mess. There are days when I ask "why me?". Who wouldn't? I find it appalling that anyone would actually have the gall to tell me I'm wrong for questioning. Then again... who am I to judge?

A big thank you to all of our friends and family that have come together from all over to support us during all of this. I think in hard times, you really learn who your true friends are, and we are outstandingly lucky to have so many of you.

Tuesday, October 16, 2012

The Sharp Knife of a Short Life

Today is an "It's not !#$%@*& fair" day. I must be a true Oregonian, because as soon as the sun peeks back through the clouds after five days of rain, I get sad. It's like reverse seasonal depression.

Of course, it's not the sun that's making me feel this way. It's life. It's the hand I've been dealt and the numerous times I've picked myself back up and carried on. Today, I really don't have much of an interest in carrying on, and I'd much rather close the door and hide under the covers. The crappy part about that is I really don't have a choice. Life doesn't come to a halt when tragedy strikes. So here I am walking around, silently resenting everyone I see for having a average, obstacle-free day and going about their business. It stings to see pregnant women and new babies, so much that I have to look away. Last night, I heard a baby crying outside my apartment and Will immediately squeezed my hand to show me he felt the sting too. No words were even needed; it's just a mutual pain we're both trying to deal with and I, personally, am feeling like a failure in that department this morning.

If you know me, you know I've encountered a few bumps in the road in my 25 years of life. My mother passed away after an eight year fight with breast cancer when I was almost 10, and my father very quickly lost his battle with lung cancer just a month after being diagnosed when I was 16. Hurt and heartache are familiar foes of mine, and I thought I knew them pretty well. I wasn't prepared for the pain of knowing that I will be outliving my daughter. It's like nothing you can imagine, unless you have experienced it. No one should have to bury their children and I'm on Team "Screw you, God" today for choosing us to have to go through it. I have good friends who have lost babies and children, and my god, how I admire their strength. Can I borrow some, please?

I've been warned that I will hear phrases that will upset me, although of course, intentions are nothing but kind. "God has a plan", "Everything happens for a reason", "She'll be in a better place", "You can always try again". These may be true, but they don't bring me the comfort I'm craving. What I want is a miracle. I want someone to smack me, wake me up and tell me this is all an awful dream. Then I come back down to earth and hesitantly remind myself that sadly, these things aren't going to happen. There is only one option, and that is to accept and prepare. Can I just put that off for about 100 years?

There will be livable days and days when I want to throw in the towel. Hard days and less hard days (I can't say "easy" days, because I just don't think they will exist). For now, I'm going to take a deep breath and remember that yesterday I smiled. I will smile again. Maybe not today, but eventually.

Monday, October 15, 2012

Don't Forget to Remember Me

Will and I met again with Pastor Alex on Friday. In the hurricane of emotions that has been the last week, Alex asked us something we hadn't thought much about: "How is your relationship doing through all of this?"

...Loaded question, huh? Sometimes you get so caught up in the bad, you may forget to nurture the things that hold you together. Your relationships with your partner, your friends, your children.

It has been a rough few months; Will's transition from one business to the next, this pregnancy not being a terribly easy one (I've been very sick and tired for the majority of it), all the while having to maintain our roles as parents to our boys. Had we lost ourselves and our commitment to each other? Will that commitment survive this trial that we are now facing? Are we supporting each other in the most effective ways we can? I can tell you this: Will has been my rock, and I can only hope he feels the same about me. He has stayed by my side almost every moment of the last seven days, and has supported all the ways I have chosen to cope (my incessant research, my blogging, my crying, etc.) I feel very lucky for him today.

This weekend, our friends Shawn and Rachel offered to take us away to the coast so we could try to get out minds off of Leila's condition and what the future will hold. We departed for Lincoln City on Saturday, where we stayed in a beautiful beachfront house and enjoyed a relaxing day at the Spa at Salishan on Sunday. We laughed, we cried, we made delicious food, we thanked God for good friends and our little girl, and we soaked up the love that our amazing friends gave us. It was just what we needed.

Yep, I'm in a onezy... and Will loved it.

Me and Rach <3

Then there is Dallas. My sweet boy with the biggest, most sensitive heart. Last week, I felt I wasn't in the position to care for him in the ways he needs. He needs constant attention (as children do), he asks lots of questions, and this Mommy was a bit too tired and distracted to provide the answers. We were very lucky to have his Grandma Jennifer and Aunt Kelsie available to whisk him away and keep him entertained while we processed for the week. We haven't told him about Leila's condition, and we haven't made plans to do so. We feel that we will know if and when the time is right. If that is when she's born, so be it. If we come across a peaceful moment between and now and then where we feel comfortable and confident, we will share with him. It is, however, pretty amazing the intuition that children have. While with his Grandma, Dallas questioned heaven and death. He asked if everyone goes to heaven, and expressed that he understands babies sometimes die, even in their mommy's belly. For now, he is loving me and my belly and little Leila constantly. He has a pretty strong mom, and I have a feeling he inherited some of those genes... he called out to me from his bedroom last night at bedtime, and asked for an extra hug. When I'd usually yell at him to quit stalling sleep and close his eyes, I gladly walked in and gave him a big squeeze. Sometimes I need an extra hug too.


With love,

Friday, October 12, 2012

Am I Allowed to Laugh?

Denial. - This isn't happening. I want a second opinion. There's no way my baby is the .001%. 
Anger. - How dare you take more away from me. Why would you choose me, someone who's lost so much already.
Bargaining. - Let it be something else. Let her live, but be disabled. Let me hang on as long as I can.
Depression. - Leave me alone. Don't ask me questions. Don't try to give me hope.
Acceptance. - God has a plan. This is real, I cannot change it, I cannot fight it.

The Kubler-Ross Model. The five stages of grief. I've gone through them all, quickly, and I have a feeling they will rotate a few times before they slowly fade. Those rotations will likely last a long time.

But where does laughter, smiling and happiness fit in there? Are they not allowed? I've been hard pressed to laugh much during the last week. Often times, it has been forced. Someone says something to try to make me smile, and I do, simply to pacify their good intentions. This isn't the Emilee I know, and it's certainly not the Emilee all of my friends know. They know me as bubbly, friendly, outgoing and ever-optimistic. I don't like this person.

When I begin to feel frustrated with my lack of ability to see the positive, I remind myself that it's okay. There is no rush for me to get back to "normal". After this experience, I don't know what "normal" will be. It has only been five days! The problem I see with that is that I've never gone so long without genuine happiness. I don't typically go longer than an hour without some sense of joy.

Today was a better day, and strangely enough, our first rain of the season. I won't say tears haven't fallen, because that would be a lie. Every time I receive a hug from a friend, I can't help but be overcome with emotion. When I hear melancholy songs, I cry. Fortunately, Will has not left my side and takes my hand whenever these moments creep in. Today, for the first time, I laughed for real. Will and I have had funny exchanges off an on all day. We've both smiled and laughed. I won't share them here; if you know us, you know it's inappropriate. Dallas came home from being with his Grandma and Auntie for the last three days, and he had so much to say. Five year olds are silly, and his sense of humor seems to have matured in his time away from home. He cracked me up for a good half hour. It felt so nice. Evidently, he knows what girls have, and it starts with a "P" (it's not what you're thinking)... Paginas. I bet you smiled a little just now. The innocence of children is awesome...

Just as it's okay to feel sad and grieve our situation, it's okay to let it not be on the forefront of our minds every second of every day. I'm not forgetting, I'm not brushing feelings under the rug. I'm finding me, even if briefly, in a place where I'm very lost. I won't be lost forever. Just ask Will, I have an incredible sense of direction.

Day Five: Our Choice

The toughest decision in all of this, no doubt, has been when to bring Leila into the world and hold her while she passes through to heaven. If it were up to us, she would stay in my belly forever, where she lives and thrives and kicks and is warm and comfortable. Unfortunately, that is just not possible, which leaves us with this: Do we deliver sooner and begin to heal now, or do we deliver later and spend as much time as possible with our angel?

In our meeting with Pastor Alex on Tuesday, he called me out when I asked this question. He mentioned that something I said was not quite true; the part about beginning to heal now. Contrary to what I'm feeling in my aching body and aching heart, God as already begun to heal us. He began healing us the day Leila was conceived. Looking back over the past five days, I see that is true. I am now able to discuss Leila and our situation without falling apart. Yes, I still fall apart and often. However, I can have a conversation with Will about the future, about plans for her service, about the though stuff without losing all control. It's almost uplifting to talk about the future now. God works in mysterious ways.

I have prayed so hard these last five days. As most of you know, I've never been much of a God person. In fact, in situations like these, it only feels natural to be even less of a God person. To be angry and to fear Him. Oddly enough, I've never felt closer to Him. He has chosen me to carry this special little girl, and I am taking that challenge and blessing on with an open heart.

I have decided that I will carry Leila until early January. We will spend the holidays with her, and her body will continue to grow as it should. When she is born, she will be perfect. I will deliver her by c-section, to increase the chance that she survives labor and that we may both hold her in our arms while her heart beats. I plan to buy a little necklace with her name for her to wear, a personalized blanket to wrap her in, a little stuffed animal for her to keep with her when we lay her to rest, and a few wonderful friends have offered to come take photos for us and our family. I can't think of a more peaceful way to spend that day. We will hold a service a few weeks after she passes, where all of our friends are welcome to come join us in celebrating the life of our incredible baby girl. Will asked that I sing, and I may even try. It will be a beautiful day.

In the meantime, we are going to enjoy the time we have. We've received flowers from friends, we'll be taking a short weekend away to relax, the support has been absolutely overwhelming and we are so grateful. I will keep praying every day, and ask that you do so as well. Pray for a miracle, pray for peace, pray for healing, and pray for all those who love us and are holding our hearts spirit every day. We are so thankful for you all.

With love,

Thursday, October 11, 2012

Day Four: I Will Carry You...

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies wipe your teary eyes
Who could love you like this?
People say that i am brave but I`m not
Truth is I`m barely hanging on
But there`s a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And i will praise the one who`s chosen me
To carry you

Such a short time
Such a long road
All this madness
But i know
That the silence
Has brought me to His voice
And He says

I`ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the one who`s chosen me
To carry you

My sweet Leila Grace:

I will spend each moment we have loving you, holding you, carrying you and giving you life. I won't let you go before God says it's time. I put all my faith in Him and his will. He gave me a special baby like you for a reason. He asked me to care for you, to nurture you and to lift you up to Him when the time comes. I will do what He has asked of me.

I have more love in my heart for you than I ever thought was possible,
Your Mama

Wednesday, October 10, 2012

Day Three: Our Confimation and the Beginning of Healing

The first night after Leila's terminal diagnosis, I didn't sleep a wink. Not for one minute. All I could do was lie awake and think about her, about our appointment, about the future. The more I thought, the more angry I became. Why didn't they offer us photos of our little girl at the ultrasound? Why didn't my doctor offer to walk us through the results and show us what we would be facing? Well, I know now she was only being sensitive; only wanting to give us as much information as our aching hearts could endure.

I called Dr. Olmstead Tuesday morning and expressed my frustration and hurt. She immediately offered another ultrasound, where she would sit with us, answer our questions and show us our baby girl again. Tuesday evening, as the night drew nearer, I couldn't feel any sleepiness coming on. I knew if I didn't ask for some sort of medical intervention, my body and brain would suffer through another sleepless night. The doctor on call prescribed an anti-anxiety medication and one hour after I picked it up, I was out like a light and slept a peaceful nine hours. God, how I needed it. Since Monday morning, by mind wouldn't stop reeling. I felt like I was at the butt-end of a bender. My mind and eyes were wide awake, but my body was to the point of absolute exhaustion. Wednesday morning came too soon, but I was ready to face what the day had in store for us. I was ready to go have my questions answered and see our beautiful baby one more time.

We arrived and walked into the ultrasound room. Neither of us could fight the tears anymore. We watched silently as the tech showed us the formation of Leila's face, and the lack of brain and skull. All of a sudden, it was so real. This was our baby, and she was not perfect, medically speaking. She was not whole. She would not live. All hope quickly disintegrated and we sobbed. The doctor came in to speak with us shortly after. She encouraged us to put lots of thought into when we would deliver. She gave us pros and cons of the options, but never offered an opinion. It's such a personal and difficult choice. One thing was for sure: this day made brought us so much closer of our little girl. We received the photos we didn't get on Monday. In one, Leila's hands are up in front of her face, just like a boxer. Just like her Daddy. Other photos perfectly depicted her face, her eyes, her feet, her hands. They are beautiful and I will cherish them forever, just as I will cherish each little kick I feel from now until the day she's given to the lord.

The face and hands of our sweet baby angel

Daddy's little fighter

Matthew 11:28: "Come to me, all you who are weary and burdened, and I will give you rest."

With love,

The First Days: Our Journey Through Anencephaly

How do I even begin? I've always wanted to start a blog, as I'm told I'm a great writer. However, it is usually funny, uplifting pieces that I write. This blog will, unfortunately, not be in that spirit most days. They may be times of laughter and happiness, but there will certainly be grief and sadness. What I hope for most by creating this blog is one thing: peace. We all have our outlets. Some of us cry, scream, drink to numb pain. Some of us isolate. Some of us reach out. I'm trying a new outlet, which is journaling and sharing my thoughts and fears and feelings with the people I love and who love me, Will, our families and our baby daughter Leila Grace Chapman.

Our journey started twenty weeks ago, when we first found out we were expecting. We were thrilled, and terrified at the same time. FIVE children!? We will be completely outnumbered! We will lose every battle, not to mention ever dollar we make which will go towards diapers, food, clothes, sports, education... yikes! But we would make it work. In the months following our announcement, we had a whirlwind of feelings. We fought, we loved, we wavered, we planned, we almost broke. Three weeks ago, our dear friend gave me a wonderful birthday gift: an elective ultrasound to determine the gender of our sweet little baby! We were absolutely on cloud nine when we discovered she was a girl. We have four boys, collaboratively, and a little girl would complete our family. The next three weeks were spent buying bits of clothes and accessories, mostly in the spirit of our favorite sports team, the University of Oregon Ducks. We began to plan a baby shower, thought of names (well, argued about names... you know us), talked about how she would never date because she'd had four big brothers fending off the boys. She would be our princess. Two days ago, on October 8th, we discovered she would also be our angel.

Monday morning, we woke up early to attend our twenty week ultrasound. The tech measured her perfect little legs, her perfect little arms and belly, and we saw her kicking her big feet (which she obviously inherited from her Mama). Toward the end, she measured her head, but stated that she was unable to get a good measurement because of the position she was in. The ultrasound lasted an hour and fifteen minutes. We waiting for my doctor to come in and give us all the results we were expecting: your baby is perfect, everything is on track, and you're halfway there! Forty minutes went by in that waiting room. Forty minutes was very uncharacteristic of my doctor, who was normally quite prompt. When she finally knocked on the door, the look on her face told me something wasn't quite right. She sat down and looked at us and what came out of her mouth next shattered our world. "I have some horrible news to give you that I've only had to deliver to one other family in all my years of practice. Your baby has a neural tube defect called Anencephaly that is not going to allow her to live". Will immediately stood up and wrapped his arms around me as I cried and cried. This was unreal. I didn't want to believe it. I asked if she was sure. I asked if it was something I did wrong. She assured me that this defect simply just occurs and not for any reason. It happens very early on in gestation (26-28 days), and nothing I could have done would have avoided it. My heart was in pieces. With no strength to ask any more questions, she showed us out the back way and sent us home to process. She told me she would call later that afternoon and we could continue to talk.

The drive home was agonizing. Never in a million years did we expect to hear something like this. Until that morning, we planned to bring a beautiful little girl home with us in February. I climbed into bed and continued to cry as Will held me, and we stayed that way for a few hours. Being the information girl that I am, I had to Google this condition and learn as much as I could about it in order to understand. A few things I learned are these (for those curious about what we will be facing):
  • Anencephaly has a .001% chance of occurrence, or 1 in 10,000 babies.
  • Stress, smoking, food choices, trauma like a fall or car accident, are absolutely not connected to this abnormality. It just happens with no real rhyme or reason.
  • At 26-28 days gestation, the the neural tube of a normally developing fetus will close and allow the brain and skull to form. In an anencephalic baby, this tube never closes. A brain stem develops, which allows for reflexes and movement, but the frontal lobe of the brain, which controls thoughts, feelings and actually brain activity fails to form.
  • Aside from the brain, the bodies of anencephalic babies are perfect. Ten fingers, ten toes, beautiful and strong beating hearts.
  • There is virtually no chance of survival after birth. At a maximum, an anencephalic baby will live for a day or two, but most are born still or will live for just a few minutes to hours.
As word began to spread about diagnosis, and as friends began to reach out with thoughts, prayers, well wishes and offerings of support and assistance, we realized just how much love is around us and our baby girl. The last two days have been very much a blur for both Will and I. We have held each other and cried, we have left the house briefly but mostly stayed in bed. Yesterday, we met with Will's pastor and long time friend Alex. We prayed, we yelled at God, we discussed arrangements for a service to celebrate Leila's life. It was a very helpful meeting, and we will continue to utilize Pastor Alex's wisdom and guidance through this journey.

We will spend the coming weeks deciding the best time to bring our little girl into the world, hold her as long as we can, and make sure she is placed in the arms of God with as much love in her little heart as possible.  I've found many blogs by parents of Anen Babies, and they have been comforting to me. I hope as my story continues to develop, I can be an advocate for parents down the road who will be faced with this heart wrenching and life changing obstacle. Please feel free to follow our journey here as we walk down this road. I will update this blog with my feelings, new information, and try to answer any questions people who come across it may have.

We want to thank everyone for their love during this time. We will surely need it, and graciously accept it. Please hold us and our precious baby in your thoughts and prayers.

With love,
Emilee and Will