Post #100

So this is not at all where I wanted my 100th post to land.  Not even close...but here we are.

I was almost afraid to go to sleep last night.  Afraid of dreaming (which isn't that common for me), but I was actually more afraid of history repeating itself on the same day.  As everyone with rational thoughts would expect, it has not repeated itself at this point.  Today will always have more significance to me than tomorrow, but it seems that tomorrow will forever be the date that the rest of the world is interested in.  

One year ago today I woke up to the immediate realization that I had slept all night long...something that I had not done in a few months.  All night long...with the exception of the gall bladder pain that sat me straight up from a sound sleep for just a minute or two around 1:30.  As the 2 hours ticked by, I became increasingly aware of the lack of movement in my belly, and within 3 hours of getting up I had determined that there was no heartbeat to be found in my belly other than mine.

One year ago today it rained all day.  I will remember that forever.  I was scheduled for a BPP ultrasound at 12:15, followed by a NST and midwife appointment.  Instead of using my morning in the office for paperwork, I found myself making a horrid call to my OB practice.  Because there is really no other option in the automated telephone system that answers your call, I opted to speak with a nurse that morning.  It is a call that I will remember forever.  It went something like this...

"Hi.  My name is Susan.  I am a patient there, and I am currently 36 weeks.  I have an appointment with Mark at 12:15, and then a NST and a midwife check; but I am pretty sure that there is something very wrong with my baby at this point.  I haven't had any movement since 11:30 last night, which is very unusual.  I also can't find her with my stethoscope, which is something that I haven't had any trouble doing over the last few weeks.  I'm assuming that I should come now instead of later when we are scheduled; I just need to know if I should go to the office or directly to L&D."  

"What do you mean you can't find her?"  

"We have been listening and monitoring her heart rate several times a day with the stethoscope.  I have never had any problems finding it, but I haven't been able to locate it for about 30 minutes now."

"What is the point of listening with a stethoscope?"

"It's an arrangement that we have at this stage of the game, but that's not really the point.  The point is that I have not had any movement since about 11:30 last night and I cannot find her heartbeat."  

"Well, you need to remember that as you get closer to your due date, the baby stops moving.  It's not going to be like it was over the last couple of months.  Have you tried laying on your left side?"

"I have laid on my left side, my back and my right side.  I have played music, which always gets her to move.  Nothing.  I understand that movement diminishes and changes as you get closer, but it doesn't stop completely literally overnight.  And it doesn't make their heartbeat disappear.  That's what I'm worried about."

"Have you had anything to eat or drink?  Did you have breakfast?  Maybe you should try some ice water."

"I had breakfast and I've done very cold juice, also with nothing."

"Well, Mark doesn't get here until 12:00, and we don't really have any midwife slots open until the time that you're scheduled, so it's not really going to do any good for you to come early.  We can't really see you until then.  It's only a little more than an hour and a half until your appointment at this point, anyway.  Try laying back down on your left side for a while and eat something else.  See if that helps."

"So I'm telling you that there is something very wrong going on in my belly and you're telling me to lay back down?"

"Well, again, we can't really see you before your scheduled time, so just lay down and rest, and we'll see you around 12:15."  

So, I sat in the recliner for about 20 minutes, pretty sure that there was a dead baby in my belly.  After 20 minutes I could not wait any more.  We took my hospital bag and headed to the office.  We were early for our scheduled appointment; I told the girl at the window I was early, and told her why.  She didn't seem to be phased a whole lot by what I said, but I also didn't use the word 'dead.'  She said that Mark had gotten there a little early, so perhaps he would get us in a little early.  We parked in the waiting room, and got in about 15 minutes early for the ultrasound.  The rest is history.

The issue of the phone call was addressed with my midwife shortly after they started my Pitocin that afternoon.  She assured me several times in the weeks that followed that it was dealt with immediately, which I was grateful for.  I know that it didn't make a difference in the overall outcome, because Gracie was already gone when I called, but being blown off by that nurse just really pissed me off...and today I can't get it out of my head.  Perhaps it's part of the reason I feel so strongly now about so many care providers (across all disciplines) assuming that they always know best and/or know the answers before their patients even speak...and consequently pay no attention when their patients do speak or dismiss everything that is said as being uneducated or off-base...

I have a few more questions to answer, which will come in the next few days...perhaps later today if I cannot manage to stay on track with the busy work that I have planned for myself.  Tomorrow we will have a casual picnic dinner with our immediate family and release some balloons for Gracie.  (It's kind of ironic the number of balloons I have been responsible for releasing over the last year, because it is something that I have, for a long time, been opposed to for environmental reasons...  Funny how one life event can change perspective.)  Wishing you all a peaceful weekend (and hoping that I can stay busy through mine!)....

No Questions Today

I have a few more questions waiting to be answered, but I am saving them for a different day.  I'm just not feeling it tonight. 

I have finally figured out why I feel so perpetually disappointed with the rest of the world's 'handling' of Gracie.  It's kind of like what we do with our husbands....  They ask what is wrong, and we respond with "Nothing," really expecting them to know exactly what is wrong and exactly what we want them to do or say to fix it (regardless of what "it" is).  I think that is how I have been functioning with everyone over the last year.  There are many times that I will answer any question asked, but there are many times that I don't want to engage in conversation...not about Gracie, not about anything.  Yet I want every person I interact with to say or do that perfect thing without prompting.  I want them to know exactly what I am thinking, feeling and needing without any prompting at all.  I want to forever be able to answer with "Nothing," but still get what I want and need from people at the exact moment that I want and need it. 

Funny the ridiculous thoughts that grief creates, even a year later...

Question #5

Today's question comes from Alexandra's mom, Maggie.   She asked 'How have your relationships with friends/family changed? Have they gotten stronger or weaker?'

This is really a tough question to answer.  I can say that, thankfully, nobody has left or been eliminated from our lives as a direct or indirect result of Gracie's death; I know that others are not so lucky.  I don't know that I can classify much as stronger or weaker, but everything is definitely different. 

For the most part, most of the people consistently in our lives (the ones that are friends or family, as opposed to acquaintances) continue to be there.  It is evident that most of them want to be supportive, but in all reality, they just don't always know how to do that.  They usually don't know what to say or do, and most don't get that sometimes is a tiny gesture or saying nothing at all that means the most.  Some try to remain as positive as they can about everything, but sometimes I'm not necessarily looking for a Positive Polly; sometimes I just want to be a downer for 5 minutes and just get it out of my system.  It's hard to explain that to people. 

I definitely feel that I still cannot talk openly about having a dead baby with most of my/our friends.  It makes people uncomfortable, and usually gets one of the standard and cliche lines...'Everything happens for a reason', 'She's watching over you now'....  It's even difficult to talk to some of my closest friends and get my point across without feeling like they are just pitying us.  It's also hard to talk to people without wondering in my head if they are thinking to themselves "I wish she/they would just get over it already." Surprisingly (but not so much when I actually think about it), I have a very easy time talking about Gracie to some of the parents of the kids I work with.  There are exceptions to this rule, but most parents of kids with disabilities just get it.  They understand and remember that this isn't just something that happened to us...they remember that it was our daughter. 

There are two things that stick out in my mind.  Small things, but things nonetheless.  I was disappointed in our parents on our respective days (Mother's Day / Father's Day) this spring.  My father had to be reminded to call me and Jeff's parents did not wish him a happy Father's Day.  Again, a small thing and not necessarily something that has changed relationships, but something that will stick in my mind for a long time.  (I didn't find out until recently that my father had to be reminded.)  The other thing that sticks out is that we have seen a side of our 18 y/o nephew that we never knew existed.  Turns out that he's pretty deep.  His relationship with Jeff may be the only one in which I can specifically identify change.  They seem to have a little stronger bond than they did before, stemming from his reaction to Gracie's death.

So I have typed a lot and not really said much.  Maggie, did I answer your question??  :-)

Questions #3 and #4

These questions are also from Carleigh's mom, Holly, who asked what my favorite food is and what I wanted to be when I was growing up. 

My favorite food....I don't know that I can limit it to just one food.  I think that I could eat pizza, french fries, jelly beans and bacon every day.  I don't eat them every day, but definitely I eat way too much of all of this stuff, especially bacon.  I was having such terrible bacon withdraw during the early months of this pregnancy that my hubby special ordered an entire slab of nitrate-free bacon for me.  That made me a very happy girl.  :-)

As far as what I wanted to be when I was growing up, I definitely did not aspire to become a physical therapist!  :-P     When I was in 5th grade, we watched a PBS series in school called "Voyage of the Mimi."  It was all about marine sciences - but it primarily focused on whales...specifically humpback whales.  From that point until sometime around 10th or 11th grade, I was dead set on becoming a marine biologist...but with aspirations of working as a trainer somewhere like Sea World (as opposed to humpback research).  At some point I realized that I was a homebody and that most of the jobs I would want are nowhere near Pennsylvania...and also that the jobs I would want were probably also hard to come by and I would likely end up doing something else while I waited for the perfect job opportunity...  So, I decided to come up with a Plan B.  That is when physical therapy entered the picture.  It's definitely not my true passion in life, but it works.  Most of the time I really enjoy my job, so I really can't complain.  I will confess though, that it was really difficult to come back to physical therapy after our incredible whale watch trip two years ago in Alaska.  Our boat played cat and mouse with a small research boat the whole time we were out...and I sooooo wanted that to be my job for the summer.

Question #2

This question is one of two that came to me a couple of weeks ago via email...I have no idea who the email is from, but this particular question ties in pretty well with the question from Holly that I answered yesterday. 

Although the circumstances around each lost baby are unique, and no two families will ever share the same experience, I was wondering what general advise or words of wisdom you might have for those whose losses are more recent.  

As I said above, for me, this question ties in really well with Holly's question about what the biggest change has been for each of us since Gracie's death.  For those who did not read that post, I will boil it all down and tell you that our ability to communicate with each other has been the biggest change for both of us...at least from my standpoint.

Based on that, the biggest recommendation that I could give to someone starting out on this journey is to start communicating with your partner about how you are feeling very early on.  You don't have to reveal every deep, dark, secret thought, but make sure that you verbalize to each other that you understand, although it is the same loss, the roads that each of you take in the coming months will be so much different.  Even if you are not great communicators now, finding a way to communicate with each other what you are really feeling (and when you are really feeling it), will make things so much easier in the long run. 

Communication becomes a very difficult task under these circumstances, but it is so important, and will help to prevent additional difficulty down the road.  

Question #1

I am getting closer to 100 posts...I haven't gotten a ton of questions, but I figured that I better start answering the ones that I have gotten...  The first question that I have picked to answer is from Carleigh's mom, Holly, who submitted the following...

I know life changes dramatically when your baby dies, but what do you think has been the biggest change for you both so far?

Without a doubt, I think the biggest change for both of us has been our ability to effectively communicate to each other what we are really feeling.  It kind of goes without saying that communication can be an issue for a lot of couples, especially if you buy into that whole Mars-Venus theory, but I think that Gracie's death has really compounded this for us.  We have gotten to the point that we will simply say to each other 'I'm just not in a good place today' or 'It's a Gracie thing' or even 'It's a (dead) baby thing.' and leave it at that.  We expect that the other person will automatically be on the same page, but those statements don't really say anything.  Perhaps they tell us which 'sport' the other is playing that day, but they don't really give any idea of which ball park that sport is being played in.  (It is sometimes hard to remember that even though we are living through the same loss, it is a completely different experience for each of us.)

My husband is a typical man's man, and he isn't much for wearing his heart on his sleeve, especially around people other than me.  He has spent the last year making it his job to 'take care' of me.  I love him with all my heart and sooo appreciate that he wants to take care of me, but I know that focusing his efforts on everything but himself isn't doing a thing to help him move forward.  I have stressed to him that we need to actually talk.  We need to let each other in on a little bit of how or what we are really feeling (I know that it would be impossible for us to understand everything that the other is feeling) so we can have a better understanding of where the other person is or what their thought process might be about certain things.  I remind him that he needs to let me take care of him the way he feels compelled to take care of me, and he generally responds with "I don't want to burden you."  What I cannot make him understand is that it is not a burden.  I cannot find any way to make him understand that, as much as we are two individuals, we are also a team.  I cannot make him understand that it is usually more 'burdensome' for me to never know where he really is or what he is really feeling, as opposed to talking things out, crying things out or just being together. 

Our lack of communication and understanding of where the other person is usually comes to a head once every month or so, generally when everything that is pent up inside one or both of us finds a weak spot through which it can start to escape.  It's not usually productive when it happens this way, and it actually has an impact on our ability to communicate about things not related to Gracie.  We are trying to find a better way to communicate on a daily basis...a way that does not breed so much negative energy and allows us to get a little bit better perspective about where the other person really is and how it is impacting them on a daily basis.

Thank Yous and Thoughts From the Week

I would like to start with a belated thank you going out to Heather at In Our Hearts Photo Pendants.  I received Gracie's pendent in the mail last week and it is fantastic!  Thanks so much, Heather, for offering this for the rest of us!!!

I would like to thank Katie (who hasn't started blogging, but has thought about it) and her husband Chad for the wonderful gift that they gave us Monday night for Gracie's birthday.  Katie made a photo board for us to display some of Gracie's pictures, and it is simply beautiful!!!  We cannot thank you enough for thinking of Gracie as her birthday approaches.

I finally got everything together to physically donate the pins that we bought for our hospital's infant loss memory boxes Monday night at our support group meeting.  I have had the pins for almost 2 months now, and have just not had the time to get things together until Monday.  Our initial donation was 10 sets of pins, which should hopefully last almost a year (hopefully longer than a year, since that would mean that babies are not dying).  Here is what we did with them.

And, of course...more butterflies.  The lady who facilitates our support group had a crafty evening planned for us on Monday.  She had purchased little wooden 'albums' for us to decorate for our little ones - and they were in the shape of a butterfly.  Since I have been the one to work on most of the stuff like this for Gracie, I made Jeff participate in this and make some decorating decisions.  :-)    We do not have a finished product yet, but I think we will be working on them again at next month's meeting while we chat.  I wasn't sure how I felt about doing this at the beginning of the evening, but it was nice.  It gave us somewhere to focus our energy, and it gave us (there were 2 couples in addition to us) a chance to just have open conversation about whatever happened to come up.  It was good.  We also learned on Monday night that our participation in this year's Memory Walk is going to be questionable.  The date has been set for September 25th, which is two days after Jellybean's due date, so we have no idea where we will be or what we will be doing until the day gets here.  

Overall, I think it has been a better week for me than last week.  I think that the last half of the week was better than the first half of the week.  Thank you all for your kind words earlier in the week.  We went to NYC last weekend - to visit some friends and just to get away for a few days.  It was a fantastic trip, but in a way there was definitely some 'suck factor' lingering right under the surface.  A really nice part of the trip was lighting two candles for Gracie at Saint Patrick's Cathedral.  It took less than 5 minutes, but was significant.  Another nice part of the trip...we stayed with one of my college roommates.  It was fantastic to have the opportunity to just catch up, but it was kind of difficult.  Her daughter was born 4 1/2 months before Gracie's due date (so, 3 1/2 months before Gracie was born).  When we were both pregnant, we got a kick out of what would happen if they had a boy (they were going to use William if it was a boy) - we would have had Will and Grace.  She ended up having an Abigail instead, so that quickly ended the little Will and Grace thing...but even so, it was kind of difficult to watch the things that Abby was doing and think about think about how she and Gracie would have played together.  Abby eats fruit like it is candy, and absolutely devoured the fresh-picked blueberries that we took with us...I just kept wondering if Gracie would have been doing the same thing.  On Sunday morning, the 5 of us went into Queens to visit with other friends from college.  They just had a baby in June, and their oldest is 22 months.  So, again, Gracie was missing.  There should have been 3 little girls ranging in age from 11ish to 22 months playing together, and instead there were only two.  I try so hard to not think about this, but sometimes it is so hard to not...

Despite this, I think that, for me, it was a better week in general.  (I think Jeff is going the other way again, though...)  I have not had quite the feeling of dread that I had at the beginning of the week.  I keep thinking about what was happening a year ago, and thinking about her birthday - again, it's difficult to not.  I know that her birthday will come and go, and the world will continue to turn.  I think back to the days before her funeral, and how much we were dreading it.  We even said that we weren't going, but in the end, it wasn't the completely impossible task that we anticipated it to be.  Don't get me wrong...it sucked ass, and it was the second worst event of our lives...but we got through it.  So I know that the anticipation is worse than the 'event' and I know that it will be fine.  It just really sucks to plan a birthday memorial for a baby that is not here. 

If you haven't read my reminder post from earlier in the day, keep reading...you're almost done.  :-D

Wishing you all a peaceful and restful weekend...

Give-Away Reminder

Just a reminder that I am doing a give-away to mark Gracie's birthday.  I will be giving a gift certificate to The Midnight Orange.  Her sculptures are simply amazing.  I will randomly pick a winner some time between August 1st and August 8th.  So far, only 8 ladies have 'entered'.  To enter the give-away, leave a comment here or on this post and tell my your little one's name and birthday...and also one thing that you will always remember about your little one and hold close in your heart.

I am also fielding questions to mark my approach to 100 posts.  Feel free to email me or leave questions of any kind here in the comment section or in the comment section of this post.