10,000

Wow - today, the pageview count for our blog surpassed 10,000 views (as of right now - it's 10,555).

I have no idea how many individual readers that translates to, but I do know that I never expected so many to be following our story and to read the words I've written.  It seems appropriate though that today was the day we hit such a milestone, because I've been doing a lot of thinking these last few days about all the support, love and encouragement that we have received in the last four months.  It has been so humbling and so incredibly uplifting.

It baffles me that the time has gone by both incredibly quickly and shockingly slowly.  I can remember the day of our ultrasound like it was yesterday and the crushing emotions that we experienced in the days that followed are never far from my mind.  At the same time, it's hard to believe that we're just four short weeks away from delivery now and are putting together the final pieces of the preparations to meet our little angel.  

Through all of this, I have had so many people tell me how I'm such a strong person and with what grace we've handled these last four months.  The truth is...a lot of days, I don't feel strong and on those days, I would describe myself as anything but graceful.  Yet, here we are...still standing, still facing each day, still preparing for all of the practicalities that need our attention.

I honestly don't think our personal strength alone would have gotten us to this point. We have had so very many who have reached out to us and many more who have held us up in prayer.  We have had loved ones and strangers alike who have opened up their hearts to hear our story and to share their strength with us.

We have been positively blessed that everyone we have encountered so far on this journey has been nothing short of amazing.  My family and friends have been there every step of the way.  Our doctor and her entire office have shown us nothing but love, support and compassion.  The funeral director and counselor are some of the most sincere and kind-hearted people I have ever met.  The priest who will be handling our baby's funeral put us so much at ease and made sure we knew that he would do anything he could to help us say goodbye in the way that we want.  Complete strangers have offered their support and kept us in their prayers. Acquaintances that we haven't talked to in years have reached out just to let us know that they've been thinking of us.

I will never be able to say enough thank-you's to all of those who have been with us on this journey and I know this won't be the last time I get the urge to reflect upon it.  But as I sit here tonight, thinking about all of those who have been walking with us...I can't help but feel overwhelmed by such a blessing in the wake of such sorrow. 

Doctor

I had a really great post written in my head last night while I was working...vacuuming is actually a great task for thinking.  Unfortunately, by the time I sat down today to write it was completely gone.  I can not even remember the topic - all I remember is that I was debating with myself about whether or not I really wanted to write it, but decided that it would be another one of those that would be really helpful for other mothers down the road.  Hopefully, it'll come back to me sometime.

In the meantime, I've been thinking a lot this week about how blessed we are with the doctor who has cared for me and all three of our children during and following pregnancies.  We had an appointment last week and it just further emphasized how fortunate we are; we've always known that my doctor and the staff in that office are a good fit for us, but I don't think we really got a chance to appreciate it fully until this time around.

I have always appreciated that Dr. N has a very no-nonsense approach to care: she doesn't waste my time with weird chit-chat but she has always taken the time to answer my questions.  She has also always been very receptive to accommodating my preferences with each pregnancy (basically, a "leave me alone until I need you" approach to childbirth).  In the five years that I've been seeing her, Chris and I have both come to value her very highly and trust her with my care and that of our children.

What has been so touching with this pregnancy is that she seems genuinely sad for us, not just as patients, but as parents and as people.  She comes in and sits down to talk with us at each visit.  She made it very clear in an early appointment that they did not intend to treat this any differently than any other pregnancy; we were still to call if we had concerns and not hesitate to come in if we felt the need.  I don't even know if she realized how much that simple sentence meant to me and how much I needed to hear it at the time. 

At last week's appointment, through chatting with one of the receptionists, we learned that the office is going through a lot of changes - retirements, departures, hires, leaves, etc - on top of the fact that they are a busy place to begin with.  You wouldn't have known it from our visit. . . Tori has been asking to see her baby on the TV screen again, so I asked Dr. N's fabulous regular nurse (who we have also gotten to know in the last five years) if it would be possible to squeeze in a sneak peek on the ultrasound. She replied with "There are just some things that we are never too busy for and that's one of them."  So Tori and Abby got to see baby sister on the screen...she was apparently messing with us because she had one little arm across her face so that all you could see was eyes peeking out.  Too cute.

It's a shame that not everyone is able to receive such incredible care at a time when it really can make all the difference.  I have seen so many other moms who have said that their doctor didn't explain the diagnosis, didn't support their decisions, declined confirmation ultrasounds, encouraged terminations when they weren't wanted and made these grieving mothers feel that the lives of their unborn children were simply not worth their time.  There is no excuse for that.  If you don't feel that your physician is working for you and doing what is in your best interest...find a new one.  You deserve that.

Island

I don't know how to explain what I'm feeling exactly, because I'm not sure it even makes sense but I feel like I have to try.  Even with all of the love, support, encouragement, kindness and prayers of family, friends and strangers...the only word I can come up with right now to describe how I feel is "alone."  It is what I imagine it would be like to stand alone on an island in sight of the mainland with no boat to get you across the waters ahead. 

I know it isn't really rational because at the very least, I have Chris by my side and we can still talk about anything.  I know I also have a number of family members who would be there for me in a heartbeat, even if all I needed was someone to listen to me cry.  I have an amazing online support network of women who have been through this and would do as much as any stranger from across the globe could do if I asked.  So I'm not really looking for anyone to say "I'm here Katie...just give me a call or a text or a message."  In my heart, I know that all I need to do is make a phone call and there would be someone on the other end willing to do anything they could if I asked. So that's not my point...honestly, I'm just hoping that by putting it somewhere other than my head, maybe I can figure out what's going on. 

Part of it is just my usual Monday funk...after working basically alone for 35 hours over the weekend, I know I usually have a little too much time in my own head, but I honestly don't mind that too much most times.  Actually, that part is kind of nice sometimes...of course there are times of chaos, it is a crisis center after all, but most of the time it is pretty tranquil and relaxed.  Our house is hardly ever what I would call tranquil!  :) 

I think another part of it is that there are several people I have reached out to recently but from whom I have gotten no response.  It isn't that I'm upset by the lack of response, exactly...I know our situation is tough and it's too much for some to handle.  That's okay, but I think what is hitting home is that, even though you receive countless offers of "If there is anything we can do, just let us know..." many of those aren't sincere.  For too many, it's just one of those things you say when you don't know what else to say to someone in crisis.  So this one isn't really a shock, but it's still kind of hard to accept.    

I think the majority of this feeling comes from the fact that we are just six weeks, or less, away from the birth of our little girl and the enormity of that is almost crushing.  I want so badly to enjoy these last weeks and I want to be prepared to celebrate the brief time that we'll have with her, but trying to balance that with keeping a grasp on reality leaves me feeling unsettled.  I know that there are those who pray for a miracle up until the moment their baby takes his or her last breath and to have that kind of faith is fine, but that isn't my faith.  I do believe that God can work miracles, but I just don't feel like that is the plan for us.  Don't get me wrong, every once in a while I catch myself daydreaming about what it would be like if this was all some terrible trial and we get to leave the hospital with a healthy baby but those fantasies are pretty brief.  For me, and for us, it's important to be prepared for the much more likely reality. I know there are mothers who have refused to make any arrangements before their baby died because it didn't make sense to plan a funeral for a baby who was still alive; I don't fault them, but that's not the way we have chosen to approach this.  Trying to balance the enthusiasm that your body wants to feel near the end of a pregnancy with the restraint that your brain is cautioning you to exercise is a constant battle. 

I can try my hardest to explain it and I'm sure it makes at least some sense, but there is no way I could ever share everything that is in my heart because there is so much that I don't even think can be put into words.  That is what leaves me feeling alone on my island...my heart and my head are so full of grief, joy, anger, frustration, love, bitterness, anxiety, anticipation, longing, and a thousand other things that I can't describe.  I know I have plenty who would jump in that boat to rescue me at all hours of the day or night, but what would I say when they reached the shore? 

Powerless

It's interesting to me that I actually wrote most of this post about a month ago when we were going through a run of particularly bad days...I had been waking up at all hours of the early morning and couldn't get myself back to sleep.  I put off editing and posting for a few days and by the time I got to it, that period had passed and things were looking a little better.  So I just left the post in draft form because I knew I would cycle back around and the feelings would once again be relevant.  And here we are...at least I'm a little predictable, right? 

I have found myself wide awake at 4:30am several days this last week with such intense anxiety that there was no way I was getting back to sleep.  Not really much to do at 4:30 in the morning with your heart in your throat, no cable and two kids who are still sound asleep.  (Another downside is that by the time Chris gets home, I'm ready to go comatose on the couch!)

I haven't had any terribly upsetting dreams and there hasn't been anything specific that has changed recently.  We've been working this week to get funeral arrangements in place and even though that was difficult, it should be something of a relief to have it taken care of.  That is one of the most frustrating things about this - I can not manage to pinpoint exactly what is causing me to wake up in such a panic but I keep thinking that if, maybe I can figure it out I'll be able to talk myself out of it.

Unfortunately, I think that all of those normal little life stresses combine with the really big stress to become almost overwhelming.  I constantly feel like I am forgetting to do something or that there will be some terrible surprise bill in the mail that I forgot to account for.  Those of you who know me personally also know that I prefer to be a pretty organized person, but lately it feels like things are completely out of control.  And to some degree, they are...we didn't have any control over the baby's diagnosis.  We have since been able to take control of our decisions regarding her life, but still, those are in reaction to something that we had no part in.

I think that feeling of being powerless or helpless is part of what is going on right now (again, this is one of those things that I don't really think I realized until I sat down to write because this isn't really the direction I had planned to go with the original post).  We get so frustrated because this whole situation affects every aspect of our lives and we know that we will never be the same again.  We know that it will always affect the girls, because they will always have a sister that they won't really be able to remember.  We will all go on living and the pain will lessen, but we will always remember that we lost a child.  You can't go through that and not come out a different person; it's not possible.

What Kind of Choice Is That??

It's been two weeks since Emilee's death and that's given me a lot of time to think about a lot of things.  It's also given me the time, against my better judgement, to read some of the other blogs and comments that have been posted regarding Emilee, Leila Grace, anencephaly and suicide.  I will never cease to be amazed at how, from beneath the cloak of anonymity, some people will say the cruelest, most heartless things I have ever seen or heard.

I will only briefly address those types of people, because I don't honestly know that I can say anything that will heal whatever deep hatred or pain that they are feeling.  I can only say that I hope one day they will realize the sorrow they cause others with their own despair and begin working toward healing themselves.

More on my mind have been the comments I've seen where well-meaning people have said something to the effect of "If only her family had known the pain that choosing to continue carrying her baby would have caused her, they would have urged her to reconsider."

I want to be very clear here... the choice given to a parent when they find out that their baby has a fatal birth defect is this:  "Your baby can die now or your baby can die later."  Sound harsh?  That's because it really is.

Whether the parents choose to carry the baby to term or choose to terminate, the end result is going to be devastating. The pain that Emilee was feeling, the pain that all of us who have been in her shoes feel...that's the pain from losing a child.  It is not a pain specific to whether we choose to carry to term or whether we choose to terminate. Both options are heart-breaking because either way, all of the hopes that we once had for the little life growing inside of us change. We don't get get to dream about watching our babies grow up, get married and have babies of their own...instead, we are left hoping that we get at least a few precious moments of life to gaze into those little eyes or feel the squeeze of tiny fingers on our own.  That is the pain we face.

If you talk to a community of moms who have felt that pain...rarely will you find one who regrets her decision to carry to term but you will find many more wishing that they had decided not to terminate. (I am not, by any means, saying that all will regret their decision but I have seen more than I can count that I have said "I wish...")

I hope that if someone in your life is unlucky enough to have to face that "choice" that you will support them no matter what they decide.  It is not your job to talk them into one or the other...unless you are a parent of that child, you don't get a say.  At the end of the day, those parents need your support...not your opinions, not your criticisms and certainly not your judgement.

Making Arrangements

I finally called the funeral home yesterday.  A little over a month ago, my friend Courtney recommended several in the area and had really good things to say about one in particular.  It's taken me this long to call them.  (Honestly though, when you think about it...how eager would you be to make that call if you found yourself in my shoes?  Exactly.)

I was amazed at how compassionate and incredibly kind the man on the other end of the phone was.   I know in that particular line of work...you should expect kindness and compassion, but I'm fairly certain that isn't always the case.  It's a family owned business that has been in the community for nearly 65 years and is currently operated by two brothers and their children.  Honestly, just reading the biographies on their website was touching - they consider their profession to truly be "a calling to the funeral ministry." 

I started out by explaining our situation, which I managed to do without choking up too much, and he expressed his sympathies.  Then he wanted to make sure I knew that they do not charge any fees for children's services and we would only need to worry about arrangements for a plot and burial.  He let me know that he would be praying for us, and since he is also the pastor of a nearby church, he would be asking his congregation to lift us up in prayer also.

There have been only a few times lately when I have been so overwhelmed that I can't make it through a conversation without tears, but this was one of them.  To hear the compassion and genuine sadness in his voice for the loss of our child and to know that they are so sincere that they would donate their services to bereaved parents, I couldn't help but be overwhelmed. 

We have an appointment set for ten days from now - sooner would probably have been better but with three different schedules to consider, it will be soon enough.  The plus side is that it gives us a more focused timeline for finally making some of the decisions that we've been putting off.  I know that I'll feel better once we finally have a plan in place, but actually working toward planning a funeral service for your child is heart-wrenching.

There are so many questions, so many details to put into place and you want things to be just right, but what does that even mean?  This isn't the way things are supposed to be.  Funerals are supposed to be for your 92 year old grandma - someone with a favorite song or flower or poem.  Someone who has had an entire lifetime for you to remember.  You are supposed to be able to tell stories about all the sweet, crazy, funny things she's done in her 92 years.  You aren't supposed to have to bury a baby who barely even got a start at life.  You aren't supposed to have to bury your children at all...this isn't the way it's supposed to work.

  

Heavy Heart

I'm not even sure I have the words right now to make a complete post, but this is one of those times where I have a head and heart full of so much and I'm afraid that if I don't let some of them out, I just might burst.

I learned a little while ago that one of the Momma friends that I have made along this journey has died.  I don't know all the details, but I do know of the struggles she has endured in the weeks since her daughter passed away (her name is Emilee and her daughter is Leila Grace).  Regardless of exactly what happened, she has left behind a family and a network of friends who are grieving for her and are in shock that she is no longer with us.

Emilee's blog was the first I came across when I started searching the internet for all I could find on anencephaly; she had received the diagnosis just one day before we did.  Unfortunately, her little girl was born early at 26 weeks and she wasn't blessed with being able to carry her daughter to term like she had wanted.  I know this only added to the struggles she faced and made an already difficult situation even more heart-wrenching. 

Her words, and later her friendship, not only inspired me to share our story through this blog but she was also a strong ally who was battling many of the same thoughts, feelings, fears and emotions that I have been facing, and often at roughly the same time.  We were from different parts of the country and never had the opportunity to meet in person, but the condition our daughters shared brought us together and I will forever be grateful for the strength and wisdom she shared with me in the short time I knew her.

Although I don't know for certain whether Emilee's death was a suicide or not, I know that she had been struggling a lot recently.  I can't help but feel like this is a fitting time to mention the resources that exist for those who are considering suicide as an option.  You can call the National Suicide Hotline at 1-800-273-TALK to be connected with someone 24 hours a day (I work for the Hotline and would also be happy to talk with you if you would prefer).  You can also go to the nearest ER if you feel that you are in immediate danger.  Talk to friends, talk to family, talk to your priest...just talk to someone you trust; tell them how you are feeling and reach out for help. 

A Hard Battle

It's almost funny how many posts I have started, but have yet to finish...it's not that I don't want to write, it just seems that I'll write just enough to feel a little better then I lose motivation and leave it for another day.  Fortunately for me, this entry pretty much wrote itself entirely in my head while I was trying to fall asleep today.  What that told me was that it was clearly what I was meant to write about.

I had a conversation with a coworker recently about a client that she knew from high school.  She remembered that when she used to know her, the girl was almost always mean to everyone around her; it turns out that the girl had been sexually assaulted repeatedly by her father for most of her life.  No wonder she wasn't a terribly pleasant person - her life at home was essentially hell.  But for those who knew her only peripherally, you just saw the hatefulness that she put out there for others to see.

That got me thinking about how what we put out there for others to see can be so very different from what we are actually feeling inside.  In that young girl's case, she probably was angry inside...but she was likely also scared, ashamed, humiliated and broken.  What about others that you encounter in your everyday life?

That frustrated mother at Wal-Mart who just snapped at her kid for smashing the bread? - Maybe her husband just left and she is struggling to juggle everything by herself.

That old man in front of you in line at the grocery store who's making you late for work because he's telling the clerk all about the dog he's buying food for?  - Maybe his wife passed away recently and he's got no one else to talk to.

That kid who is throwing his food on the floor at the restaurant and having a complete meltdown?  - Maybe he hasn't gotten much sleep lately because his parents are always fighting in the bedroom next door.

It is so easy to roll your eyes at that mother, or sigh at the man in front of you, or give hateful looks to the noisy kid...but instead, take a minute to take a deep breath, give each one a sincere smile and thank God for the blessings you have in your life.

For me, right now, I probably look pretty normal to anyone who sees me in my daily life.  Even with the dark bags under my eyes and my perpetual hooded sweatshirt, I don't look too different from any other pregnant mother of two young children.  It's pretty intentional...even when my hair is in a sloppy ponytail and my shoes don't match my shirt, it has taken a lot of effort to look as normal as I do most days.  Because on the inside, there are days where I am about one smashed loaf of bread from completely falling apart.  Don't get me wrong, all things considered...I think we're doing pretty well, but even that's relative.