Broken

Webster's Online Dictionary defines "broken" as: violently shattered into parts, damaged or altered by breaking, made weak or infirm, subdued completely (syn- crushed, sorrowful), not complete or full.  

When I asked Chris how he was doing the other night, his response was simply, "I feel broken."

Those of you who know him at all know him as a man of few words.  When we are with others, he really doesn't speak much unless he has something important to say.  Fortunately the same rule doesn't seem to apply when it's just the two of us and we really have a lot of wonderful conversations.  So for him to sum up everything so perfectly in one word really shouldn't have shocked me. 

It's a remarkably apt description of the way we've been feeling.  We both still get up each day, we go to work, we take care of our girls, we manage the house, we talk to friends and family.  But even while we do all of that, we're acutely aware of the fact that we are not quite whole right now.  We've got a lot of pieces and parts that haven't settled back into place yet and we've each most certainly been damaged in this process.

Thankfully we have one another.  We've also got the support of our families and friends. We've been blessed with the prayers of those who know us and many more from people we've never met. We know that in time, we'll get to be a little less broken. We also know that like anything that has to be put back together, we won't be quite the same the second time around.  I think there is even the possibility that we'll actually be a little stronger and a lot wiser when we're finally whole again.  

 

A Powerful Ripple

We have been so positively blessed with overwhelming support from our families and friends in the last few weeks.  It has meant so much to us to know that so many are praying for us, thinking about us and reading my words here.  We are truly grateful to those who have reached out to us and for us.

But today, I ask for a different kind of support and maybe a different prayer.  I ask that you will think of the other family members affected by the life and death of the angel that I am carrying. I ask that you say a prayer for each of them.

You see, Chris and I aren't the only ones hurting. I've been so wrapped up in my own grief and in trying to survive these last few weeks that I haven't really thought as much about everyone else as maybe I should have.  There are grandparents, aunts, uncles, and cousins who are hurting right now.  They, too, are mourning the loss of this child and struggling to watch their loved ones in so much pain.  They are also grappling with a profound feeling of helplessness because there just is so little that can be done right now.

I ask this especially for the sake of the grandparents.  It has occurred to me in the last few days, through reading some pretty powerful blogs and through some soul-searching of my own, that this is very likely as hard on each of the grandparents as it is for us as the parents.  On top of the grief that naturally comes along with a death that takes a loved one much too soon, they have to watch their own children struggle with one of the most unimaginable pains a human being can suffer.

I think of how excited Mom was, before the diagnosis, to be telling people that this would be her eighth grandchild.  I think of the amused look on Dad's face when Tori unwittingly told him about "the baby in Mommy's tummy" far sooner than we intended to share.  I think of Mike's excitement when he found out he would be getting yet another grandbaby so soon after the arrival of granddaughter number three in November. 

Then I think about the pain and devastation that was so obvious from all three when we had to tell them about the diagnosis.  I think about the tears that I heard in each voice and the strength that each one has struggled to summon forth when they knew that their children needed it more than ever.  I think about how hard it must have been for my Dad to have to call my siblings because I knew I couldn't do it that day - although I am eternally grateful that he was able to do that for us. 

I have been selfish the last few weeks and wanted them to be there to support us, but I realize now that they need support just the same that we do.  This isn't easy for anyone and it isn't fair to ask anyone in these circumstances to "be strong" for the sake of anyone else.  We all need supported sometimes and sometimes we need to be there to support others.  Even the strongest tree will fall if it isn't permitted to bend a little when the wind blows.   

A Brief Shining Moment

"Continuing the pregnancy is not about passively waiting for death. It is about actively embracing the brief, shining moment of this little life."  http://www.perinatalhospice.org/FAQs.html

What a beautiful way to think about this little life - a brief, shining moment. 

Some days, and these are the bad days I've mentioned, it does feel like we are just sitting around waiting for death.  Other days, I realize what precious little time we have with this child and strive to enjoy every single second.

When I look back on this time, I don't want to remember all of the grief, the tears, the pain, the anger, and the sadness.  I want to remember feeling him/her kicking.  I want to remember watching my belly grow as our child grew.  I want to remember talking to this baby just like I did with each of the girls when I was carrying them.  I want to remember each little hiccup. I want to remember the time that we'll spend at the hospital holding him or her.  I want to remember showing this baby all of the love that it is possible to give.  I want to remember seeing the girls meet their sibling.

And I'll want to remember all of the things that other mothers complain about and take for granted - I want to remember having to go pee every twenty minutes.  I want to remember all the stretched ligaments and pinched nerves.  I want  to remember my backaches.  I want to remember my fingers and feet swelling.  I want toremember the discomfort of each contraction. Why would I want to remember these things too?  Because they are all a part of what few memories I will get to have with my third child.  In the past, I've been just as guilty as other mommas about complaining during those last few weeks or months, but not this time - how could I possibly complain when those things are really just such small irritations when you're looking at the big picture?

Honestly

I mentioned in my last post that I've been having a run of bad days - unfortunately, that still seems to be the case. Don't get me wrong, it isn't that every moment of each day has been miserable...it's just that at the end of each day, I feel the sorrow more profoundly than I'd like.

On the plus side, this has led me to have an interesting conversation with myself about figuring out who I want to be in the next few months.  It has also made me think about what kinds of things I want to share in my journal/blog.  Primarily, this is a way for me to put my thoughts into solid words and to share the journey of our newest little one.  The secondary purpose is for me to share with family and friends, but also with other mothers who might be experiencing similar loss. 

I've read quite a few other blogs from parents who have been down this road before and I am astounded by how positive and at peace these people seem to be - and I am truly happy for them that they feel that comfort. Unfortunately, that leaves me thinking sometimes...what's wrong with me? Why am I not handling it nearly as well as they are? Why can't my inner thoughts be all rainbows and unicorns in the face of this tragedy?  (I know that's a bit of a simplification and that they, too, are in pain.)

That leads me to two possibilities - 1) maybe they really are just that balanced and that together that they feel pretty positive most of the time or 2) maybe they just aren't sharing all the negative thoughts, feelings and emotions that have been my near-constant companions for the last few weeks.

In the last few days, when things have been especially rough, I've found myself asking "Do I really want to publish this entry?" or "Do you really want to share those thoughts with anyone besides Chris?"  As a result, I have several entries just sitting in draft form right now.  I've decided that I'm going to go ahead and share them all, in due time.  Why?  Because they reflect how I feel.  Because they are honest.  Because I think that it is important for someone else who might be going through this to see someone else handling the good times and the bad. Maybe not always handling them with the grace that I would like, but muddling through just the same.

I have every intention of enjoying my pregancy as much I can and I have every intention of doing my very best to focus on the positives.  But the simple fact is, every day can not possibly be a good one and it isn't fair to myself or to anyone else to only post about the good days. 

"Supposed To"

I think I've had a run of bad days recently.  Fortunately, they aren't the kind of bad days where I can't function, but I do find myself in more of a funk.  I've started about four different blog posts with just a snippet of things that I've been thinking about so that I can come back to them whenever I get a chance to explore each one a little more. It turns out that none of them have been particularly uplifting.  When I'm done writing something, I'd like to sit back and see that I've been able to come around to at least a little something positive but I'm having a hard time doing that right now.

For instance, most of the time I can keep it together pretty well, but when I really start thinking about what's coming in just a few short months I start to panic. Honestly, the last two weeks have been the hardest of our lives but I have the feeling that they don't even compare to what we'll be feeling in February or March.  Then it's going to be time for this baby to leave the safety and comfort of my body and our time with him or her will come to an end, all too soon. 

I think about what it's going to be like to drive to the hospital for the induction.  I think about going through labor and delivery.  I think about holding this child for whatever little time we have.  I think about letting family meet him or her.  I think about trying to explain to Tori and Abby why this little baby doesn't look like any others they have ever seen.  I think about what it's going to be like when my milk comes in and there is no baby to feed (I plan to donate whatever I can pump for as long as I can, but still, it won't be for my child).  I think about packing our things and leaving the hospital with no car seat and no new baby.  I think about telling my children that they aren't getting a baby brother or sister at home, even though they just saw him or her at the hospital. I think about having to deal with a funeral or memorial or burial or cremation or whatever we decide on top of recovering from childbirth.  I think about having to step outside of our grief to celebrate Abby's birthday just a few weeks after this baby is born.  I think about having to face the decision on whether or not we will ever try to have another child.   I think about the fact that we will always have the birthday of a third child to celebrate, but there will be no party, no cake, no presents, and no happy little kid to celebrate with.  I think about a hundred other milestones that we don't get to see with our third baby.

Of course I'm grieving the physical loss of our child, but it doesn't feel like what I expected.  It's hard to figure out how you are supposed to grieve the life and loss of a baby that we haven't entirely lost yet, a baby that is still very much kicking inside of me each day. (I have to share that I have been struggling with understanding why I haven't been more outwardly upset about this aspect of our diagnosis, and it really didn't occur to me until I was typing this that this is most likely the reason why...I can't figure out a way to mourn a life that hasn't left us yet.)

What I am having a much harder time with and what does often bring me to tears is grieving for all of the things that we're going to miss out on with this baby.  I'm grieving harder right now for the life that we were supposed to have with this child, because that is more obvious.  I understand fully the diagnosis we were given and it leaves no doubt as to what the prognosis is for this baby.  So, maybe in a way, all of those "supposed to's" did die the day we had our ultrasound.  Maybe that is why this part of my grief is so much more painful and so much easier to identify. 


 

True Believers

True Believers - Darius Rucker  
http://www.youtube.com/watch?v=3qFkMQsEnA4 

Church bells ringin’ on our wedding day
Climb in that limo and we rode away
Guess you’ll always hear some people say
They’re never gonna make it

We settled in and we settled down
In this quiet little seaside town
You were the rock I built my world around
And life won’t ever break it

We are one heartbeat in the darkness
We are one lasting answered prayer
We are one unbroken promise
We are two true believers

It wasn’t easy gettin’ here today
Sometimes you stumbled, or I lost my way
But every roadblock was a chance to say
Take my hand, I’m here beside you

We worked and made it through the toughest parts
Now every day is another chance to start
To look around and see that where we are
Is where we were trying to get to

We are one heartbeat in the darkness
We are one lasting answered prayer
We are one unbroken promise
We are two true believers

We are one before our God in Heaven
Oh, we are one road when the going gets rough, yeah
We are one now and forever
We are one name, one life, one flame

We are one heartbeat in the darkness
We are one lasting answered prayer
We are one unbroken promise
That we are two true believers
We are two true believers

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I heard this on the radio on my way to work one night recently, actually a night after Chris and I had been discussing our relationship and all that we've been going through.  The song fit so perfectly with what we had been feeling and what we had been talking about that it was almost too perfect for me to have found it by accident while scanning through the presets.

"Take my hand, I'm here beside you" is probably one of my favorite lines.  I can't imagine going through this experience with anyone other than Chris by my side; he is an incredible father and an amazing husband.  There have been a lot of times in the last two weeks where the only thing we can do is to hold one another's hands or share a quiet hug.  Even without saying a word, sometimes such a simple gesture is all that is really necessary.

I suppose I took it for granted that he would be by my side and that we would walk this path together.  But after reading the words of several other mothers who have faced the same or similar situations, I realize how wrong I was to make this assumption.  (Depending on what you read, the statistics for divorce after losing a child vary wildly but it doesn't take much more than common sense to realize that it's going to put a strain on any relationship.)  The fact that we have been able to come closer together instead of being pushed apart is no accident and it certainly isn't a given.  We've been honest from day one that we know how difficult this situation could be on a marriage; it was actually a part of our discussions in the hotel room the day we received the diagnosis.  We agreed that throughout the months and even years to come that our relationship needed to remain a part of the discussion and decided to be aware of how we were doing individually and as a couple.

I'm not crazy about giving advice and it isn't something I intend to do so explicitly here, but for whatever reason I feel compelled to do it with this subject.  ~ I suppose this rings true for any couple, but especially for those who are facing the loss or illness of a child:  Don't be afraid to be honest - you have to be there to support one another because at the end of the day, you are the only two people in the world who are inside of your situation.  You are the only two people who will ever be able to fully understand what the other is going through because you both share the life and loss of a single child.

Overprotective

As a mother (and I would think the same is true for fathers), it is a natural instinct for me to want to protect my children.  They mean the world to me and I would no doubt die trying to keep them safe.  In the last two weeks, I have been amazed at how much more intense that feeling has become. 

Our world was so badly shaken with that ultrasound - up until that day, I was worried about things like needing to have a c-section and whether or not I would be able to breastfeed this baby.  I thought about the whole circumcision issue and whether or not it would be too painful for our son, if we were having a boy.  I wondered if I would be able to labor and deliver again without the use of medications or interventions.  Those were the concerns that were foremost in my mind.  It never consciously occurred to me that our baby might have a birth defect, let alone a fatal birth defect.

For the last eleven days, it seems like we have been waiting for the rest of our world to implode - just waiting for something else to go wrong.  It has forced us to consider our own mortality and that of the two children we already have.  It has caused me to pause every time we get ready to leave the house and wonder if something bad is going to happen.  When we say goodnight, I hold each little hand just a little longer and hug each precious little body just a tad tighter. 

I know that this is a normal reaction to losing a child, but that doesn't make the feeling any less real or any less terrifying.  Despite that, we now find ourselves walking a fine line between carrying on with our normal daily activities and wanting to lock everyone in safe protective bubbles.  I want so badly to protect my children from pain and danger, but I've had to face the fact that all we can do is the best that we are able.

We will never be able to entirely rid our world of danger or pain, but I've certainly become more in tune with my reactions to it.  I can't say that I don't want to lock us all in the house and hide from everyone and everything, but I can say that combatting that instinct has taught me a few things.

*We can try to make something positive grow from each experience.
*We can mend fences, so that we work toward living a life with no regrets. 
*We can be more aware of how precious life is and how important it is to cherish the moments we are given. 
*No matter how hard we try, how much we pray, or how careful we are...we don't know what each day will bring us.  Why would you ever want to waste one second of that precious time?

You Might Have Been Wondering...

We finally shared our diagnosis on Facebook a few days ago - we took a little over a week just to process what we needed to process and to allow friends and family time to find out and process as well.

I've decided today that I will go ahead and share this blog with friends and family. With that decision, I thought it might be nice to go ahead and provide some of the answers to questions that I know exist but that many would never ask us. (This post seemed appropriate today since it should be the one that appears at the top of the blog when someone visits.)

*Why are you blogging about something that is obviously so painful and personal?*
  It's a good question and probably one I would've been asking too until I found myself in this position.  First and foremost, this blog is a therapy for me as I tell the story of our third baby - like a journal.  When I put together a post, my focus is really on whatever I've been thinking about for that day and putting my feelings into actual words has already been a nice outlet. Second, I have found so much comfort these last few weeks in the words that others have written about their own journeys with anencephaly and how they have managed to cope with such devastating news.  If even one mother reads the words I have written and finds some bit of comfort in them, then I am confident that choosing to share this was the right decision.  (I've even had the privilege of connecting with another mother who received their diagnosis just the day before we did - it is so helpful and so healing to have someone walking beside us, experiencing the same emotions at almost exactly the same time, although I truly wish neither of us had to cope with this.)  Third, this seemed like an okay way to let friends and family stay up-to-date on what has been going on with us, even if we don't speak with them often.  

*Why have you chosen to carry this baby to term?*
  If there is an easy answer to this one, it is simply because "this was the only decision that felt right." As I've mentioned in earlier posts, this was one of the very first discussions that Chris and I had and it was actually one of the simpler decisions to reach.  We briefly considered each of our other options and ultimately settled on carrying to term.  We also plan to pursue organ/tissue donation if possible, but are waiting on a discussion with our doctors to see what current state law and policy will allow. Carrying this baby will also allow us as much time as possible with our third child, however brief that might be, and we have decided that this will outweigh all the pain and challenges we will be facing in the next few months.  I know that feeling this baby kick, hiccup and punch will cause me to tear up all too often and I know that the questions of well-meaning strangers will be painful,  but ultimately this will be time that we get to spend getting to know our child for the short time that he or she is with us. (As a total side note, we found out later that our state doesn't actually allow termination of pregnancy after 20 weeks in most situations.)

*What will you be doing about arrangements after the baby is born?*
  Honestly, we don't know yet...and this is the one decision we haven't been able to settle on.  It isn't that we disagree on how to handle it; it's that each time we think we have reached a decision, we think of some new angle and begin questioning ourselves.  We've decided to wait a few weeks, then talk with our priest and the funeral home to discuss it further.  I'm relatively certain I'll be posting about all of that when the time comes.

I'm sure those aren't the only questions that have been on the minds of our loved ones, but in my mind, they seem like the most difficult ones to actually ask. Those "why" questions are always tricky because there can be so much implied judgement in that one tiny word and I appreciate the efforts of those who are trying to be sensitive and supportive. 

Trying to Be Okay

We have spent the last nine days trying to work on processing the news we were given at our ultrasound.  Some days we have done well and some days we really have not done so well.  Actually, I don't even know that I can count time in terms of days right now...it really seems like things can change from moment to moment.

It can be something as obvious as seeing that four day old baby in the pediatrician's office yesterday.  With that sight came the realization that the baby we are now carrying will likely not live to see a fourth day with us.  The same thought came to me when I saw someone carrying their itty-bitty newborn through the grocery store. I would have expected bitterness or anger with these sights, but really I just feel a longing and a sadness.  I am truly happy for these families that they have what appear to be happy, healthy babies but I can't help thinking "Why not us?  Why don't we get that with this baby?"

Other times, it's just a thought that pops into my head.  We went out to dinner tonight (because I still just don't feel like cooking some nights- we've given ourselves two weeks of slack, then it's back to normal on that front) and as Abby struggled to get out of the high chair, I thought about what it would've been like to have a child with each of us in the booth and one more in the high chair.  Now it will be a while before we experience that, if we ever do. 

In just the opposite way though, the most random things can snap us back out of our misery and help us to step outside this tragedy for a moment.  A never-fail distraction is when one of the girls comes over for an unprompted hug, kiss or snuggle - in that moment, it is impossible to think about anything other than the little miracle in my arms and how much I am overwhelmed with love for both of them everyday.  The same happens when they are giggling together or playing with Kitty - there is so much joy on those little faces, it's hard not to get caught up in it too.

I guess what I'm saying is that we really are trying to be okay.  We are trying not to be consumed by grief and sadness and loss every moment of every day.  I'm not saying that we aren't devastated or that we aren't hurting nearly every moment of the day, but I am saying that to lose ourselves in that pain would be an even greater devastation than what we are already facing.  We have two beautiful, happy, healthy little girls who need their Mommy and Daddy.  We have a strong marriage that is facing the single most difficult time we've ever seen together.  We have family members who are hurting and struggling too.  And we have a new baby who needs our love and needs us to make a lot of decisions for him or her in the coming months.  What choice do we have, other than trying to be okay?

It's Been One Week Since We Looked At You...

It has been a full week since our ultrasound and it feels like we have aged seven years instead of just seven days.  There have been so many emotions, discussions, decisions and feelings to deal with and a lot of tears to shed.  Despite all that, we have still been trying to cling to some semblance of normalcy...not just for us but for the girls as well.  Chris has been off work most of that time and I worked some modified hours this weekend, but for the most part we have just been spending time as a family and enjoying one another. We've eaten out a lot because I just haven't been able to make myself prepare anything. We've also probably indulged the girls a bit more than normal - hence the fact that we now have a kitten.  Otherwise, we have done a pretty good job of holding it together during the day and trying to make sure that life is moving on as close to "normal" as possible for the time being.

It has surprised me a little that woven through all of the bad we have encountered this last week, we have managed to find moments of fun, laughter and goodness too. It seems like the image I have always had when someone receives tragic news is that they spend all day and night sobbing in bed and just can't manage to go on.  (Don't get me wrong, I've had times where all I want to do is hide in bed and pretend that this isn't happening to us!) In reality, it is always in the back of my mind but we have still managed to laugh and play and enjoy the girls.  Chris and I have laughed and teased and glimpsed pieces of our old relationship. I have been able to think about other things like the grocery list, Christmas presents, Halloween costumes and finally getting a haircut that was nearly two years overdue.

The downside to all of that?  It kind of makes me feel guilty.  I wonder if I'm allowed to laugh?  If I'm allowed to have fun?  If I'm allowed to forget about this tragedy long enough to focus on something else? I know, of course, that the answer is "Yes, it's the only way you'll survive."  Somehow, that doesn't help the guilty feeling all that much though.  In the end, I find myself questioning - "Why are you able to discuss this without crying?"  "Why have you been so focused on the practical?" "How are you managing to get up each day, dress and feed your kids, and do all of the other things that have to be done?" "Why aren't you in near-constant tears?"

For the last week, I probably have been focusing more on the less emotional aspects of our diagnosis; these would be the things that require a decision or action on our part at some point.  It is probably intentional that I try not to let myself think about the things that we'll never get to experience with our third child.  Right now, those are the things that make me tear up and feel like I'm at the edge of losing it. I never thought I would be able to discuss cremations, burials, funerals, or death without sobbing, but I've had to.  With those things already discussed, my mind is painfully free to contemplate the first hugs and kisses that we'll never feel, the first words that we'll never hear, the first tears we won't get to wipe away, and the first time playing with big sisters that we'll never get to see. These are the things that didn't really come to mind those first few days but are creeping in now and breaking my heart. 

I know that the strength I've had in the last week has been a blessing and I am grateful that we've made it this far. I am also thankful for the fun and the good times we have still managed to have.  It just somehow feels like it means we love this baby less than we should or that we aren't grieving "the right way." (I know there isn't really a "right way" to grieve, but if you've been there I think you know what I mean.)

Perinatal Specialist

We had our consultation with the perinatal specialist yesterday.  It went pretty much exactly as I expected that it would, although it would've been nice if he would've said "No, everything looks good.  Must've been a mistake."  He was surprisingly personable and had one of the best bedside manners I have ever encountered; he truly seems to be living his calling and that was something of a blessing.

They tried and tried again to find out gender, but baby just refused to cooperate (stubborn like the girls, I suppose!).  He or she was sitting cross-legged and despite the doctor's best efforts to jiggle those little legs out of place for a glimpse, it just wasn't happening. 

We discussed our options, but Chris and I had already decided that the only option for us to carry this baby to term and cherish whatever time we are given with him or her.  We also discussed organ donation and he said that he would look into and would also contact our regular OB to discuss what the current stance is...he wasn't sure because it has apparently changed several times.

We also found out that baby's left kidney had quite a bit of fluid in it and that the bladder wasn't functioning, but that's pretty common in anencephalic babies.  They aren't able to drink and eliminate the amniotic fluid like other babies, so one of the few risks to the mother is the chance that fluid will build up and I'll end up with an extra huge belly.  That's doable unless it gets to the point where it becomes difficult for me to breathe.  Of course, all of the other normal pregnancy risks apply but otherwise, there really shouldn't be a reason that we won't be able to have a relatively normal, vaginal delivery.  There will, however, probably have to be an induction done since most of the time labor doesn't start spontaneously.  (They think part of the reason is because labor may be triggered by one or more of the structures in the brain.)

It was nice to be able to get some clear ultrasound pictures of baby and the whole session is on DVD for us.  It was also neat to see baby's hiccups and to find out that he or she seems to be just as stubborn as the two girls we already have!  :) 

How Can You Possibly Know?

While I was looking up information tonight, I came across a forum that I knew I should not have bothered to read.  For some reason though, it was like a train wreck and I couldn't stop myself from looking. It was a discussion board regarding a mother in the news who had decided to carry her anencephalic child to term.  I did not look up the mother or her exact story, but the basic idea is this: they carried to term, she blogged about it, took pictures at the hospital, shared those pictures, friends and family were raising money to help cover medical and funeral costs.  All the while, this woman and her family relied heavily on their faith to get them through that difficult experience. 

The first sign that I should have stopped reading was the fact that it was an Atheist discussion board (damn you Google).  While I may be pretty upset with God these days, I don't necessarily deny his existence so I knew this forum was probably not the best place for me to explore the viewpoints of others.  Again, I ignored that instinct and read on. 

What I found was disgusting.  I'm not going to go into a lot of detail, but it was basically pages of comments berating this mother and her family for their decision.  They ranged from a simple inability to comprehend why she would choose to continue the pregnancy (not surprising if you've never faced it) to outrage at her choice to cause her child pain (in reality, these babies are not able to feel pain) to announcing that her faith in God was idiotic to accusing them of exploiting their baby's tragic existence for financial gain (in reality, I believe the benefits were being held to cover expenses).  I could go on, but from there things got really nasty.

This really wasn't what I had intended to post about tonight, but it struck me so much that I felt I had no choice.  Chris and I have said from the beginning of this journey that no matter what options we choose, there will certainly be people who will disagree or who will not understand. (Fortunately, I think most of them are willing enough to keep that to themselves.) 

The fact of the matter is that we aren't making these decisions for anyone but us and our children.  I don't expect anyone to fully understand what we're feeling or why we choose to handle anything the way that we do.  At the end of the day, we have to be able to sleep with however we choose to proceed.  And each morning, we have to look in the mirror and live with this - we need to know that we have made decisions based on what we truly feel is best.

It is so easy to stand apart from a situation to judge and say what you think you would or would not do.  It is absolutely impossible to say with any certainty what you would actually do when faced with something that has only crappy options. 

With Arms Wide Open

"With Arms Wide Open" - Creed

Well I just heard the news today
It seems my life is going to change
I close my eyes, begin to pray
Then tears of joy stream down my face

With arms wide open
Under the sunlight
Welcome to this place
I'll show you everything
With arms wide open
With arms wide open

Well I don't know if I'm ready
To be the man I have to be
I'll take a breath, I'll take her by my side
We stand in awe, we've created life

 

 

I heard this song tonight and couldn't help but let myself sob a little bit.  I know the lyrics weren't actually meant to sound the way they sounded to me tonight, but they seemed to fit, at least in my head.

 

* With the news we received last Tuesday, our lives did change forever.  We have always envisioned ourselves as a family with four children - but now we are not only going to have to watch one of our children die, we aren't even sure we want to have any more biological children.  Instead of 1 in 10,000 - the odds for another child with a neural tube defect are about 4-5% (or 1-3% with extra folic acid).  I honestly don't know if we will ever be ready to take those odds and try again.  We have agreed to wait a set amount of time before we make any final decisions, but I know what my answer would be if I had to choose today.

 

* We will absolutely welcome this little life with open arms. He or she won't be able to see or hear for the short time that we have together, so we may not be able to show our little one everything we would have liked but we will show this baby all the love that it is possible to give in such a short period of time.

 

* I don't know that either of us is ready to face the man/woman, husband/wife, father/mother that we will have to be in the upcoming months, but unfortunately we don't really have a choice. We'll be taking a lot of very deep breaths and standing by each other's sides because that's the only way our family will make it through this. We have two children at home who need us to still be there for them and we have another child on the way who needs us to make a lot of decisions and do the best we can to make his or her time on Earth as special as possible.

 

* We have created life.  No matter how short his or her life may be - there is still a child growing inside of me.  Every once in a while, I can feel a kick or a movement and it brings tears to my eyes every time. I know it will continue to bring tears to my eyes for the next 4-5 months, but I can not imagine giving up that precious time with the life that we have created. 

 

I am not usually one too deeply affected by song lyrics; I tend to listen more for the beat and focus on that (it drives Chris crazy that I can sometimes listen to an entire song and have no idea what it was about).  Tonight, however, I just couldn't help but reflect a little.

 

 

That First Decision

One of the first decisions with which we found ourselves faced was also the most important; I don't know if I would say it was the most difficult though. Basically, we had to decide - what do we about the diagnosis we just received? We will be meeting with a specialist on Monday to discuss our official options, but I know enough to already know what paths we are facing. And really, none of them are especially appealing.

The first option is to elect for an immediate termination of the pregnancy.  We discussed this option and quickly discarded it.  Despite the fact that our baby has no chance for survival, he or she is still our child. We knew that this wasn't a decision that we could wake up and face every morning.

The second option is to carry to term and hold our child for as long as we are able before he or she passes. Obviously this means another four or five months of pregnancy during which I know that we will never get to bring this baby home from the hospital but it means a few minutes or a few hours of holding him or her in our arms.

The third option, and one that we aren't even sure will be offered, is to have an induction done and deliver now.  With this option, there is no guarantee that the induction will work at twenty weeks.  We may end up with a c-section or having to wait to term anyway.

The fourth option, and another one that we aren't sure will be offered, is to carry to term and make the decision for tissue donation.  If it is offered (or if I can find somewhere close where it is offered), this will be our first choice.  As difficult as the next five months would be, we could at least take some small comfort in knowing that our child helped spare other families the pain that we are feeling right now.

Please know and understand that I am not asking for anyone's thoughts or opinions on what choice we should make.  We are the only ones to make that decision and we are the ones who will have to live with that decision for the rest of our lives.  My brother said it best in response to another family member who was feeling helpless - "She isn't looking for anyone to give advice or tell her what to do.  She is just looking for support for whatever decisions she makes."  He couldn't be more right. 

Struggling with Our Faith

I have so many many things I need to write about and I don't know exactly what order to do them in, so I'm just going to try my best and apologize along the way if it doesn't seem completely logical.  Unfortunately, I'm struggling a little in the logic department right now.

I have always been the type of person whose relationship with God has been a work in progress.  From the time I was old enough to start asking questions, I've been asking them.  For the most part, I have found a lot of answers in the last twelve years and up until about four days ago, I would've said that my faith in God was stronger than ever.  Today I don't know that I can really say that.

I pray.  I always pray before I go to sleep and whenever else just feels right.  For the last few nights I haven't.  This is mostly because we wait until we are so exhausted that we can just fall into bed and go to sleep immediately.  Today I had to take a nap since I will be trying to go to work tonight, and when I went to say my prayers I found that I just couldn't do it.

I am, of course, still thankful for the good things in my life - my husband, my daughters, my family, my friends and all of the other blessings we have. It seemed, however, that for one of the first times in my life I was having a hard time wanting to talk to God.  I wouldn't necessarily say that "angry" is the exact right word for how I am feeling right now. Chris is furious and he has no problem putting that into words; I don't blame him for that.   I, on the other hand, don't even know what word I would choose for my emotions right now.

Many of the blogs that I have found in the last few days chronicle the struggles of mothers who have such a strong faith in God that they believe this whole experience has given them a better relationship with Him and who truly believe that this is a part of His plan.  Truthfully, if someone tried to tell me right now that the death of my child was part of God's plan - I might just punch him/her.  I am not, by nature, a violent person but to stand in front of me and tell me that a God I have always believed to be loving and benevolent planned for my family to suffer and lose a child...that is just more than I can bear.  I applaud the people who can believe that and, maybe, one of these days I will find the strength to believe it too.  For now, however, I take no comfort in that statement and find myself facing Square One again when it comes to evaluating my relationship with God as I used to know it.

*Now that I am done with this post, I am honestly debating whether or not to leave it or delete it.  I don't want it to be interpreted as my having lost my belief in God or turning my back on God.  I want it to simply acknowledge that, for me, this is just one small part of what I'm working through.  Ultimately, I think I will leave it because I know that other mothers in this situation will likely be having similar thoughts and if it helps them even a little bit, then I'm ok with sharing it.*

Processing

We managed to get the girls home after the appointment (about a thirty minute drive) and my parents came up to stay with them so Chris and I could take the night to just process everything that had happened in the last twelve hours.  We had gone from parents who couldn't wait to find out if they were having a boy or a girl to parents who still didn't have the answer to that question, but did know that their child would die shortly after birth if he/she even made it that long. 

I can't possibly begin to describe the conversation we had that night...and wouldn't really want to because it was one of the most intensely painful and personal times we have ever had together. What I do want to share is just exactly what kind of choices and thoughts we were facing.

When we received the diagnosis, I already had a pretty good idea what it meant - we could either terminate the pregnancy immediately, choose an induction and deliver immediately, or carry the baby to term and deliver at that time.  We meet with a specialist in three days to discuss these things with him, but we've already determined what is or isn't an option for us.  I will say that I am thankful for a husband with whom I am totally compatible and with whom I truly seem to connect; there was never a battle or even a real difference of opinion when it came to this topic. 

A large part of the discussion also focused on what we were feeling.  At the top were bewilderment and anger.  How on Earth could this possibly happen to two normal healthy people?  Why would God allow this to happen?  What did we do to deserve this? Why are we having to suffer like this?

Then the more practical questions - How do we tell our family? our friends? our coworkers? What do we tell a three year old who was thrilled to be getting a baby?  What kinds of arrangements will we make?  Who will be allowed in the room after the baby is born?  What will the baby look like? How long will he/she live? 

Finally, just a lot of sobbing, but somehow not as much as I expected.  It just didn't seem to be that useful. There were so many things to face, so many things to discuss...and the longer I cried, the less we would get done.  

We managed to get some sleep, more out of sheer exhaustion than any real desire to rest.  I also think we both wanted to wake up the next morning and find out that this was all some terrible nightmare that wouldn't quit or some horrible practical joke.  Unfortunately we woke to a world where nothing had changed - we were still facing the death of a child.

Our Ultrasound

We knew I was pregnant even before the test came back positive; so really there wasn't much surprise there.  But we had planned to wait a little longer to have our third child because our life had been so hectic in the previous few months; we thought it would be best to let things settle a little.  God apparently had other plans.  That was ok; we had about a week of panic, then began to get excited.  As I think is probably the case with most third pregnancies, I was so busy with our other two girls and life in general that it wasn't until I started to feel the baby moving that I was really able to start connecting with this new little life. I really began to look forward to our 20 week ultrasound and finding out if we would be adding a baby brother or baby sister to the mix.  (T was adamant that she wanted a baby sister and I had to admit it would be easier since we already had all the pinks and purples, but at the same time a son would have been great too.)

We got to the ultrasound early Tuesday, both girls in tow with promises of seeing their new brother or sister on the TV screen.  Things started off normally enough with the tech showing us what a nice long leg the baby had...but Chris and I both noticed that this ultrasound just somehow looked different than the ones we were used to.  After about ten minutes, the tech abruptly said "I'll be right back" and stepped out of the room.  Obviously panic sets in about that time and you begin to wonder what could be wrong...strangely, the only thought I had was "anencephaly." (It had been featured on one of "our shows," Private Practice, last season and for some reason that stuck in my head.)  Our doctor came in, looked over the tech's shoulders and after a few minutes of watching her nod, she confirmed what the tech suspected and what I think I already knew.  She said the most devastating words I have ever heard, "The baby has what's called 'anencephaly' which means that the back of the skull and the forebrain just haven't developed.  It's like a really really severe case of spina bifida.  It's not compatible with life, or any quality of life after birth."  I'm sure that is a bit of a paraphrase because I kind of started to shut down, but that was the gist.

Like anyone who receives that type of diagnosis, my first thought was "Oh my God, what did I do wrong? I know I didn't do a good job of taking my vitamins, was that it?"  When I asked, she replied with "There is absolutely nothing you did wrong, maybe taking vitamins two or three months ahead of time would have helped, maybe not.  I have people who smoke and drink Mountain Dew and eat Twinkies their entire pregnancy and their babies are fine.  You didn't cause this."  That, however, is a battle I think I'll be fighting for a while.

Why?

This blog really has several purposes...First is to tell the story of our third child, who was diagnosed with anencephaly two days ago. Second is to serve as a sort of therapy for me; I have an amazing husband who is enduring this journey with me, but writing has always been an outlet for me.  Third is the hope that some other mother going through the horror that we are facing will read this and find some comfort in some aspect of our experience.  Fourth is to help our family and friends through the journey as well; it is too difficult to share all of my thoughts and feelings in person or on the phone. 

I have no doubt that this will be difficult for some to read - it's ten times more difficult for me to type.  So I will take no offense if someone chooses not to follow our journey in this way.