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Tuesday, May 18, 2010

Where We Are

In an attempt to keep friends and family updated on our pregnancy with Beana, we created a friends and family blog.  Because my baby loss blog is private and unknown to most of our friends and family, we decided to make a different blog about Beana that is completely separate from this one.  I wrote this entry to post there and thought that I would also post it here.  It is long, so save it for when you are suffering from insomnia.  :-)

I have been writing this post over the last few weeks, filling in bits and pieces here and there when the thoughts are clear.  I have written it because almost everyone we encounter these days wants to know how things are going and how we are doing.  They are such pure, innocent and well-intended questions, but it is soooo difficult for us to answer in one or two words at this point.  While some of this post is about our pregnancy with Jellybean and how it has been changed by Gracie's death, much of it is about our grieving and healing process since Gracie's death.   It is written from Susan's perspective, although much of it is applicable to pretty much both of us.  Although we have been relatively open about some aspects of our grief and healing over the last 9 months, there is much that we have not really disclosed or openly shared with others.  There are many questions that, for various reasons, people are afraid to ask.  So here are some answers in black and white.  It is meant to inform, not to offend...so please don't take anything that is said here personally.  This has been a very emotional process for us, and our emotions are still pretty raw...and sometimes raw emotions lead to blunt statements.  As we have moved through the early phases of Jellybean's pregnancy, there has been a surge of new and old emotions, and I am sure that the surging will continue.  But, in the meantime, here is a snapshot of where we are.....
First of all, I feel the need to extend heart felt thanks to those who have been there for us over the last 9 months.  Although many of you usually feel like you don't know the 'right' thing to say or do, you have nonetheless been there to offer support and love when it has been needed most.  Unfortunately, you are in the minority.  As we have come to learn, many of the people in our lives feel compelled to say or do something, but because they don't know the 'right' thing to say or do, they generally say and do nothing.  I say this not to make people feel bad, but to let those people know that they are not alone in their reactions.  I was in the same situation when friends of ours suffered a full term loss a few years ago - I desperately wanted to say or do something for them, but I simply could not relate to or understand the impact of what they were going through, and consequently said and did nothing to offer much support.  Now, more than ever, I feel like such a schmuck for that, but it has helped me to understand why people might react the way that they do.  The random (even if they are sometimes a little awkward) words of encouragement and acts of kindness and love are appreciated...please keep them coming if you feel so compelled, even if you are not sure they are 'right.'  You might be very surprised by how appreciated your gestures really are. (I have been surprised to learn that there are some people who are so profoundly affected by death in general, or who have been so profoundly affected by Gracie's death for one reason or another that they just cannot face it or address it.  If a time comes that this changes, you know where to find us.)

During a random conversation about 6 months ago, I told someone that what I was hoping for was not pity from other people, but sympathy.  The looks of pity were starting to get old at that point, but I was also having some frustrations in conveying my grieving process to others.  I said that I completely understand that everyone suffers the loss of a loved one at some point in life, and I am no different.  I acknowledged that I am certainly not the first person to lose a child or suffer stillbirth, and that our loss did not make us 'special' in that regard.  I also said something to the effect that no matter how much you think you are prepared to deal with death, when it comes, it just rocks you and in the long run it's very hard to be 100% okay with it.  She agreed with me, but then told me that she had lost her husband, an adult child and a toddler grandchild within a span of several years (I was unaware of any except the husband) - the last was about 5 years ago.  The loss of her husband was expected after extended illness; the loss of her son and grandchild were unexpected (and not connected to each other).  She told me openly that while she mourned the loss of her husband a long time (and still does), that she was prepared for it and relatively at peace with it, primarily because he was no longer suffering.  She said that the unexpected nature of death is a completely unique circumstance that can and will rock anyone that it touches.  She said that unquestionably, the unexpected death of her grandchild was harder to accept than even the unexpected death of her adult son.  It was an interesting conversation, full of insight and perspective...it gave me hope with regard to my own grief and made me feel a little better about the lengthy process that was still ahead of me.  It's a conversation that I will remember and appreciate for the rest of my days.

Unfortunately, we have encountered a some folks over the last several month who have had a different opinion about our loss... people who openly downplay the lasting effects of Gracie's death.  While this is not (thankfully) something that we run into on a regular basis, it is pretty bothersome when we encounter it.  Just as an example, a few months ago someone asked me if I didn't think it was creepy that I carried pictures of a dead baby with me.  Shortly after that, I was asked by someone else if I was "over" "the baby thing."  While the source of this particular question definitely must be taken into consideration, I was still floored.  I was shocked that anyone would have the gall to ask if I was "over it", and I was even more astounded that Gracie was being referred to as "the baby thing."   We think about and miss Gracie every day.  This will never change.  Her loss and her absence is something we will never, ever get over.  For the most part, the pain has dulled a little bit since August, but we will never get over it...and in our eyes there is no reason to get over it.  She was our child - our first born child.  She grew inside of me to a very viable age, and then she died.  Something was taken from us that can and will never be replaced.  Some people give the appearance of downplaying it because they don't know how else to address it - this does not bother us.  On the other hand, some people downplay it because she was stillborn; in all reality there is no difference between death coming 25 hours before her birth or death coming 25 hours after her birth - in the end I carried her for 36 weeks and in the end she is dead.

I have been told that we cannot live in the past forever.  (Most of this ties in with the people who view Gracie's death as something relatively insignificant in the overall scheme of life.)  These comments always leave me wondering and pondering, and I always come back to the same basic thought.  To the world you are just one person, but to one person you just might be the world.   There is no question about it - Gracie had become our world, and we were prepared for her to be our entire world forever (at least until she had to share the spotlight with a younger sibling - hopefully all parents out there can relate to this).  Then our world was turned upside down.  Everything had shattered...lightning had struck...we had hit the impossible odds...however you want to say it...  Ultimately, every expectant parents' worst fear was suddenly our reality, no matter how hard we wished otherwise. It was our reality.  So, based on this, we have an opinion on the whole living in the past thing.  We are not living in the past.  We are living within our reality, which spans past, present and future.  This reality started on July 31, 2009 and will continue until the days that we die.  We will forever live in the reality that one of our children will always be missing when we are gathered around the dinner table or Christmas tree.  We will forever live in the reality that our first born will never be here on August 1st to celebrate her birthday.  We will forever live in the reality that her siblings will only know that she existed because we will tell them so ... not because they live with her, know her and love her.  And, until we are done having children, we will live in the very real fear of lightning striking twice.  Sure, reality will get a little easier as the years pass, but it will always be reality - not the past.

All of that said, I can say that for the most part, we are 'okay.'  We have survived.  We have continued to put one foot in front of the other. So many people have commented on how strong we are.  Thank you for giving us this credit, but we want people to understand that there is a stark difference between strength and survival.  What we have demonstrated is our ability to function in work and survival modes - it is not something that we consider to be strength.  In the early days there was one decision to make: stay in bed and let this literally kill us or get out of bed, go on with life and grieve while we do it.   We have continued to get up every morning and go to bed every night.  The rest is simply a matter of survival, not strength.  There is a song that includes the lyrics "This is...How it feels when the sacred is torn from your life and you survive..."  It can't really be summed up any better than that.  That said, there are days that are much easier than most and there are days that are much harder than most.  There are still days that we wish the rest of the world could/would come to a complete standstill with us; instead we stand still and watch everything moving and spinning around us as if all is right in the world and nothing had ever gone wrong.  Some days require little effort to get through, but there are days that a complete meltdown is just around the corner.  Meltdowns generally come without reason, and many times without warning; they can be brief or they can last for several days.  They are fewer and further between, but the intensity is certainly no less.  

We continue to grieve every day because all we have left after 36 weeks (8 months) of pregnancy are a few pictures and small mementos.  We grieve every day for what we will never experience with Gracie...we will never see her roll over, sit up, stand up, walk, talk, go to school, fall in love, get her driver’s license...all of the things that you look forward to when you become parent.  We grieve because we never saw her open her eyes…because she never took a breathe…because she never felt our touch on her hands, back, belly or face…because we never had the opportunity to discover her personality other than what was evident while I carried her.  We grieve because we believe that Gracie could be here with us.  Please do not interpret this to mean that we place blame on anyone (our OB providers included) or anything for this, because we do not.  It was a culmination of very unfortunate circumstances.  Regardless of the reason, we grieve...forever.

This entire experience, as anyone might imagine, has impacted our view(s) on the world...in many, many ways......  I have a hard time accepting that “everything happens for a reason” (even though I am a believer that everything does happen for a reason) with regard to Gracie.  I have a hard time listening to people say that it was all part of God’s plan, and that she must have been needed more somewhere else - we needed her here just as much.  I have a hard time listening when people say that she is in Heaven with this person or that person – those are the people that were supposed to prevent this from happening in the first place.  I have a hard time accepting that Jeff, Gracie and I were destined for this long before Gracie was even a thought. I just do.

I also have a hard time with the fact that baby death is almost taboo.  No question about it, it's an unpleasant thing to think or talk about.  I have heard several comments over the last 8 or 9 months about 'unnecessarily freaking out' expectant parents by talking about it or educating about it.  Believe me, I get that.  I get it 100%, and to a degree I am on board with that mindset.  However I can say, with no hesitation, that I wish it was something that had been thrown in our faces during pregnancy.  I would have rather been a little freaked out by valid information than been blindsided like we were.  Because we have friends who lived this nightmare 2 1/2 years before Gracie's death, we had a very rough idea what would happen once we got the confirmation that Gracie's heart was no longer beating.  When I say a very rough idea, I mean we knew - before we even got to the doctor's office for confirmation - that labor would be induced and I would give birth to our dead baby girl.  Aside from that, we were completely blindsided.  After it happened to our friends, I should have known more about it, but I lived in the land of make believe - it wouldn't happen to us.  In the end, I wish we had known more about what is possible with every pregnancy.  I really, really do. 

Other people’s pregnancies and babies are generally a very weird thing for me at this point…and to a degree, this pregnancy with Jellybean is also a weird thing.  I would never wish this fate on anyone for any reason...and I am happy every time someone takes home a happy, healthy baby...but sometimes the ugly green envy creeps up.  My mind wonders why that girl and that girl...and that girl, who obviously can't even take care of herself, can go home from the hospital with living babies and I cannot.  The envy creeps up when I see someone with a pregnant belly...and then I remember that I have no idea what she has been through to get to this point, and no one knows what horrible unforeseen events might lie ahead of her.  Friends of ours are expecting a baby in June.  Somehow, my subconscious managed to push this info all the way into the back of my memory banks, and I actually 'forgot' for about a month and a half that they were expecting.  (Sorry, guys.)  When I realized this, I was mortified...absolutely mortified.  I felt like the most selfish, self-centered and self-absorbed person on the face of the earth.  After discussing it with a few other 'baby loss moms', I realized that I wasn't alone and that it was something that I really didn't have much control over. Still, it's pretty mortifying to me that this even happened.

I am horribly afraid for other pregnant couples, even those that we don't know.  I see them becoming more and more excited as they get closer and closer to their due dates, and the fear I feel is incredible.  I remember being in that same happy, excited and naive place as we crossed the 8 month mark, and having no idea what was only a few days around the corner.  I am so, so fearful that others will unexpectedly stumble upon the same fate and find themselves as the newest members of this awful club.   It is something that I cannot explain beyond this, but I ask everyone who reads this to understand and remember that no one is immune.  It happens...more often than anyone wants to admit...and often without warning.  It can shatter worlds and leave you feeling more alone in a crowded room than you could ever imagine.  I hope that our experience is the closest that any of you get to understanding this heartache. Please - talk to us or read more about stillbirth if you want to be at all proactive.  We will share our story with anyone who wants to know. 

With all of this said, I arrive at our pregnancy with Jellybean.  Suffice it to say that we are very excited, but totally petrified. It is easy to say that we have no reason to expect the same outcome with this pregnancy, but we really had no reason to expect that anything would happen to Gracie.  I want desperately to go back to the naive people that we were a year ago and enjoy every minute of this pregnancy with nothing but carefree delight.  We went through our pregnancy with Gracie knowing that babies could die, but lived each day with the mindset that it couldn't and wouldn't happen to us.  Life is different now, and we almost expect each day with Jellybean to bring disaster.  On some levels, it's almost easier to expect that disaster will strike with the hope that if it does, it won't be quite as devastating since we are expecting it.  Bad plan?  Yep.  Realistic?  Nope.  Does it help us to get through each day just a little easier?  Yep.  Speaking for myself, I am doing everything I can to do to not lose all enjoyable moments of this pregnancy to fear.  I look forward to feeling Beana move every day...I look forward to our next ultrasound and seeing her moving around...I look forward to watching my belly grow.  But with each passing moment, I am still afraid. 

We have learned in recent weeks that Jellybean is a girl.  This brings with it bittersweet emotions.  We were so ready to bring home a little girl in August...especially Jeff.  When we initially learned that Gracie was a girl I saw a some of the glimmer disappear from his eyes for a brief time, since he was really wishing for a boy initially.  It didn't take long for him to adjust to the idea of having a little girl, and he was so ready to bring home (and spoil, despite what he says) his little princess.  Having another little girl will certainly allow him to do just that, but it will be so much different than it would have been with Gracie.  We will always look at little Beana and wonder.  We will wonder how much of Gracie really lives in her...how many similarities or differences there really are that we will never be able to see.  For a long time I will look at her and think about all of the things that we missed with our beautiful first born.  She will wear the clothes that we bought for Gracie.  She will sleep in the bassinet that was ready for Gracie.  We will love her with all of our heart for who and what she is, but it will be a little bittersweet for a while.

Earlier in our pregnancy we learned that there is a higher than average possibility that Beana may have Down Syndrome.  While it is certainly not something that we sit around and hope for, if she does have Down Syndrome, it will certainly not be the end of the world.  This is something that we have gotten a lot of feedback about from the people around us, and I want to sound off a little bit.  Again, it's not meant to offend, just meant to express my opinion.  The odds of anyone randomly ending up with a dead baby are roughly 0.625%.  We ended up with a dead baby.  ~  The possibility/probability of Gracie having Down Syndrome based on the first trimester screen was 1:47 - this means that if you lined me up with 46 other women, there is about a 90% chance that I would be the one whose baby was born with Down Syndrome.  I completely understand that this is a screen, not a diagnostic test, and I completely understand that there can easily be false 'positives' with the screen.  I also understand that there are cases of Down Syndrome that this screen will not detect.  All of that said, the professional assumption at this point, based on the medical information available for review, is that Gracie very likely had Down Syndrome.  ~  Based on the first trimester screen, Beana's odds of having Down Syndrome are 1:39.  Everything that applied to the 1:47 probability applies to the 1:39 probability.  Does that mean that Beana will definitely have Down Syndrome?  No.  Do I understand that?  Absolutely.  Do I need people to point this out to me every time it's discussed?  Not really - being reminded that it's only a screen and not a concrete diagnosis doesn't help me feel any differently or more confident about the situation.  Why?  Because, as much as I would love to be an optimist at this point, I must be a realist.  We are 2 for 2 with regard to hitting the very slim and unlikely odds.  There is also a very good possibility that, if Beana has Down Syndrome, all of these events are connected to each other - not just random coincidence.  If that is the case, it is going to have a significant impact on further expansion of our family.  So, while it is certainly easier for me to assume that Down Syndrome 'won't happen to us', in my eyes it is not realistic to do so since we do have seats on the 'it did happen to us' wagon.  I would rather expect the 'worst' and hope for the 'best'  Some will say that I am going glass half empty on this one, and that is fine - everyone is entitled to an opinion.  With the way life has gone over the last year, I simply need to go with the realism over optimism on this one. (We are encouraged by the fact that there were no obvious markers for Down Syndrome seen on the the latest ultrasound, but we also know that many kids are born with Down Syndrome after showing no markers on ultrasound.  Right now, we simply take comfort in knowing that there are no obvious heart defects!)

As we prepare for Beana's arrival, I will spend (and have already spent) many hours thinking about all that lies ahead of us with regard to medical intervention.  I will put endless thought into weighing the fact that women have been having babies for centuries without medical intervention against all of the marvels of modern medicine against Gracie's demise.  We are firm believers that, while modern medicine offers such amazing things to those in the minority that need help getting through pregnancy and/or childbirth, for the most part women can give birth to healthy babies without significant medical intervention.  I believe that many women don't do enough to educate themselves about pregnancy and childbirth and do not make their own decisions, and in the end, many allow themselves to be turned into 'sheep' by the medical community.  We are now in the aforementioned minority and it sucks...and to be quite honest, I am sometimes pretty much still in denial about being part of that minority.  I still believe that I can give birth to a healthy baby without all of the bells and whistles, but I am scared to death to do so.  I am so petrified of lightning striking twice that I have purchased the sheep costume.  It's still in the package, but it's definitely here.  (And I am pretty sure that Jeff has also purchased one.)  So, while we will prepare again for Beana to arrive via a natural and unmedicated birth, we will also think every day about the fact that bringing home a living baby may require us to abandon our plan, as well as our medical standards and values...this really seems like a no-brainer, and it will be a no-brainer if it comes down to it.  But that doesn't mean that we will feel any better about abandoning our values...it just means that in wanting so desperately to bring a living baby home, there were chances that we weren't willing to take.

So there you have it (if you made it this far).  Whether you consider our 'position(s)' to be right, wrong or indifferent, this is where we are.  Perhaps it is nothing new to some of you, perhaps it is more than some of you wanted to know, perhaps it simply gives a clearer picture.  Regardless, there it is.


Antoinette said...

Thank you....although i am not expecting a rainbow ( i lost my daughter at 36 wks 2/23) i have the same realistic views on it...i have the same feelings of all the what ifs with ALyssa....I feel the same about peoples continuos need to let me know "god's plan' as if THEY HAVE been the chosen disciple or something....Good luck with your 2nd daughter...I will keep you in my prayers..ironically i had just come here about an hour ago and read your last post...I guess it was "meant" for me to read this tonight as well..xoxo

*Laura Angel said...

What a fantastic post! I wish I could just copy and paste because I feel EVERYTHING that you are feeling! (Except for being prego...but that shall come) Its funny how you just tend to loose friends...people act so differently around you...I cant wait to follow your story more and more in the future

Melissa said...

That is an amazing letter / post. I hope those close take the time to read it and take it to heart. Thank you for posting it.

Tina said...

You are dealing with so many things right now...I admire your tenacity to keep yourself informed and not just rely on the medical professionals to make decisions for you. You are a wonderful mother to little Graci and you will be a wonderful mother to this sweet new one too! xx

Maggie said...

That's a really great post! I think you took every word right out of my mouth! I've thought of all those thoughts & been told a lot of similar things as well. I think of you, Gracie & the little Beana every day. :-)

Lori said...

Yep. Get this. TOTALLY.

Praying little Beana comes home safely and soundly...can't wait!!!!!

Holly said...

I think people need to realize that you don't have to do something grand to show you care. Sometimes the little things are better. It can be a simple card, or "I'm thinking of you". It means a lot to have people show they care and have forgotten about you or your baby. (I think it means even more when it's later down the road and people have seemed to moved on.)

Hmmm...I must be creepy b/c I carry lots of pics!! I have a whole album I carry in my purse! To me, it seems totally natural and I love having them with me.

I so agree that this experience changes things. It does impact your views.

Ashley D said...

I am not sure how I have gone this long and not stumbled across your blog. A dear friend Jill posted this and I had to come read.

I too lost my son last year, different story but same grief journey. And now, we are expecting again. I have tried and tried and tried to write, draft and play out blog posts and thoughts but it doesn't come out right. BUT, You... You said it PERFECTLY! Every single sentence I sat here and said... ME TOO! No lie.

Youu have such a beautiful way of writing and I love it. I am so thankful I stumbled across your blog. I am praying for you and your new lil one. I look forward to reading your journey and hope 2010 brings us ALL some healthy rainbows.

God bless,
Ashley (Nolan's Mom)

P.S. I am linking your blog on my blog. This is a must

Julie said...

you have so eloquently expressed what so many of us have felt the need to say to people. i wish everyone who knows someone who experiences a stillbirth or infant loss would read this post before saying anything insensitive to grieving parents.