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. 

What a Difference a Year Can Make

I have been using all of my 'free' time today to very diligently bust through some paperwork...and all day long I have been fighting the urge to blog.  I keep thinking about one year ago...one year ago this very day, and one year ago in general. 

One year ago this very day I had my second NST with Gracie.  I sat for 90 minutes for a minimally reactive, but eventually acceptable NST.  One year ago in general we were unknowingly so close to the end.  We were almost to the point of starting to suspect that something might be 'not quite right', but we had no idea what was waiting for us just around the corner...just 10 days around the corner.

We knew that we were close to our world changing forever...in terms of being 4 weeks from the due date of our first child.  We never, in a million years, suspected that our world would be changed by her death before it was changed by her birth. 

I think about all the little things that, in retrospect, very casually pointed toward this end...and I think about all the things that pointed toward a healthy and happy baby and essentially negated all of the other little things that pointed the other direction.  I wonder if I will ever stop playing these points over and over in my head...and I conclude that, no matter how many healthy children we go on to have, I don't think I will every stop replaying any of it. 

I have been told several times that the weeks leading up to Gracie's first birthday will be much like the weeks leading up to other holidays over the last year...worse than the actual holiday itself.  I anticipate that I will find much truth in this, and I am ready for this week and next week to be over.  Sigh. 

More 'Skinned Knees' for Gracie's Mama

The world just doesn't make sense...ever.  Yesterday's local paper had an infant obituary, and so did today's paper.  Why the hell are babies dying?  All the time.  Everywhere.  It just doesn't make any sense at all.  None.  I read something somewhere on the internet shortly after Gracie's death that has apparently stuck in the back of my mind since.  I cannot for the life of me remember where I read it or what the context of everything was, but what sticks in my mind is something to the effect of 'if every product of every conception was carried to term and resulted in healthy, live deliveries, the world would be incredibly crowded and out of control.'  The logical part of my brain says 'yes, it would be a pretty crowded place'; the BLM part of my brain says that that thought process definitely did not originate from a BLM or BLD.  The BLM part of my brain also says that there certainly must be a better way for mother nature to carry out her survival of the fittest game.  There is just nothing natural about babies dying.  Not a damn thing. 

It has been a rough week for me.  Although she has not part of every conscious thought, Gracie has seemed to have extra strong presence this week.  Perhaps the rough week and Gracie's extra presence are why I have been here blogging so much this week.  I don't know.  What I do know is that last night I wanted to do two things.  I wanted to climb to the top of the highest building around with megaphone in hand and just start screaming f-bombs as loud and for as long as I could; not at any specific person, just at the world in general...and I wanted to drink myself into complete oblivion.  I did neither; instead I read for a little bit and went to bed early since the hubby is out of town. To be perfectly honest, I have wanted to drink myself into oblivion since the day we came home from the hospital without a baby and I have not.  I have definitely had enough, on two occasions, to put me over the legal limit, but I was far from oblivion.  Quite frankly, I think I am (well, was, since drinking hasn't been an option since January) too afraid to go there.  Most nights I think I was too afraid to even have a drink.   

Yesterday was a horrific day for me, which is why I wanted to do the aforementioned yelling and drinking.  I had something that could be classed as a cross between a breakdown, a meltdown and an 'episode.'  The acute part of this incident lasted for 80 minutes...80 minutes of hard and uncontrollable sobbing.  The subacute part of this incident lasted for the remainder of the day and evening in the form of sore eyes, a runny nose, fatigue, a complete lack of desire to be around any other people, and slightly befuddled dogs.  I am sure that Gracie's stronger than normal presence played a large role in this incident, but she was actually not actively on my mind when I fell apart, and honestly, she was not an overly active thought while I was sobbing.  I was almost mindless while my tears did their own thing.  I am sure that it was exacerbated by the lack of air conditioning while trying to work with preschoolers over a 5 hour period in yesterday's 100 degree weather, but that was certainly not the cause.  It my have been exacerbated by some type of hormonal deal, but that certainly was not the cause.  It may have been exacerbated by my increasing angst about Jellybean's arrival, but again, it was certainly not the cause.  It may have been exacerbated by the fact that I am again overwhelmingly feeling like I have little to no control over anything in my life, but this was not the cause.  It was definitely exacerbated when I came home and found that both dogs (in a period of only 6 hours) had pooped on the floor, one of them had peed in the house, and one of them had pulled a several pound bag of doggie chicken jerky off of the counter for both of them to devour (very likely leading to the pooping incidents), but again these were not causative factors.  This incident, quite simply, was caused by the fact that I am mother to a dead baby...and all of the things that come with it.  The entire incident started like a switch was flipped on.  No warning, no active thoughts about Gracie and no obvious triggers. 

Like many people here in our little corner of the world, I am okay, but I am obviously not fine.  I have been on this ride long enough now, and I am very much ready to get off.  I cried for a week after Gracie died.  I cried so much that I had a headache for a week and was pretty dehydrated.  I cried a little less in the second week, and in the third and fourth weeks, my crying tapered off to almost nothing.  I can count on one hand, with left-over fingers, the number of substantial crying 'incidents' that I have had since September.   I can go for months at a time and be 'fine'.  And then, out of the blue one day I am completely not fine.  It doesn't happen often, but I am so tired of falling down.  So very tired. 

Yesterday I was so 'not fine' that I missed a couple hours of appointments in the office until I could somewhat compose myself enough to see patients in the office.  Everyone says that they 'understand' and blah, blah, blah....but when I have to cancel school services or patients in my office, all of that understanding and patience seems to go out the window.  Everyone understands until it's their (or their kid's) service that is disrupted by my temporary inability to do my job.  No one seems to consider that, out of necessity and dedication to my job, I took only two weeks off after Gracie's death, and that that was not nearly enough time.  No one seems to understand that it's not the same as a parent dying.  No one seems to understand that I am not creating these moments at will.  They don't get that there is no telling how long these incidents will continue to creep up without warning...but everyone certainly seems to have the same underlying sense of annoyance when they do.

Anyone who reads here even somewhat regularly knows that I encounter my share of idiots during my daily travels.  I suppose that's what I get for staying in central/rural PA.   But there are a lot of normal people in my life, and I sometimes forget that...probably because even those people frustrate me sometimes.  I know that they all mean well, but sometimes there just isn't a correct/right thing to say, no matter how much thought they put into their response.  Sometimes I talk without really wanting a response...sometimes I just want to get it out and I want someone else to hear it.   Sometimes I just want people to know what it is that lingers in my brain and my heart without them necessarily saying a word about it.  BUT...those with half a brain usually feel compelled to respond with attempted rationalization.  Rationalization of why I feel the way I do.  Rationalization of why I should feel differently or have a different perspective.  Rational suggestions about how to feel better or develop a different perspective.  Sometimes what they obviously feel are rational thoughts about how they anticipate they would feel, act or react if they were in my shoes.  SURPRISE, none of it makes me feel any better.  I don't really expect them to say anything that makes me feel better, but it would be nice, if just once, someone said something sympathetic and realistic. 

I don't know.  I think that this week was my illustration of 'the higher you climb, the harder you fall.'  I have been having so many more 'up' days than 'down' days that the down days probably seem to sting a bit more than they used to.  I know that it will always hurt, but I am ready for it to hurt a little less.  I am ready for the sting to disappear completely. 

Wishing you all a peaceful weekend...

Flashback

As August 1st gets closer and closer, I seem to feel Gracie's presence more and more.  Not to say that her presence has been absent, but suddenly I feel like she is here...in my face.  Perhaps hormones play a role, perhaps it has something to do with the fact that I have not been quite as busy as I was during the first 9 months after she died and my mind has more opportunity to process other thoughts.  Whatever it is, it seems to be stirring things up. 

Over the last week I have been out and about to peddle my summer P.T. services to about 2/3 of the kids that I see during the regular school year.  I showed up early in the week for a home visit with one of my preschoolers, only to find that her mother had forgotten that I was coming.  While I waited in the living room, she hastily gathered her daughter, who is a very small 3 1/2 year old, and brought her out for her session.  Because the weather here was in triple digits, she was dressed only in a onesie and a diaper; prior to this I had never really seen her without clothing.  This little girl is severely disabled and has essentially no motor control at all (literally, she has about 1-2% of normal overall motor control) - but it was not until that visit that my brain absorbed exactly how 'floppy' she really is.  As her mother carried into the living room, her arms and legs just hung there and flopped around without a trace of active muscle tone or activity.  Her arms and legs are so skinny that her skin is loose and just kind of hangs there, especially around the big joints.  It hit me in an instant and that is all it took...all at once I flashed back to the very early morning hours of August 1st.

At that particular moment, sitting on their living room floor, I could see only arms and legs...no face.  At that particular moment, her arms and legs flopped around as if they were completely lifeless.  At that particular moment I was back in my hospital room watching them carry my daughter's lifeless body from the foot of my bed to the warming table.  It all looked the same.  I actually had a physical reaction to what I was seeing, which is something that I don't often experience.  I started to sweat profusely; my palms got all clammy; I got a bitter, almost copper-like taste in my mouth and my jaw muscles started to sting and burn; my stomach started to turn.  There must have also been a visible change, because once they were settled on the floor Mom looked at me, pointed at my belly and asked if I was okay.  I went with that and played it off as a momentary pregnancy thing, but I was not okay.  I wanted to get up, walk out the door, run to my car and leave.  These people do not know about Gracie, and that was not the time for me to go there.  I certainly was not going to tell her that on that particular day, everything about her daughter reminded me of my dead baby.  The next 35-40 minutes were some of the most treacherous that I have pushed myself through since September...as we worked, I just kept looking at this little girl's arms and legs and seeing Gracie's lifeless little arms and legs. 

That moment is gone, that P.T. session is over.  But the connection will undoubtedly remain active in my brain for weeks and months to come.  

A Trip to the Beach

I graduated from college in 2000.  I am still in very close touch with 5 good friends from college, and all live within 3 hours of me.  One lives in SW Connecticut, two are married to each other and live in Queens, one lives in North Jersey and the other moved back to upstate NY a little over a year ago.  Out of all of us, there are 4 children ranging in age from 3 years to 2 weeks.  Plus Gracie.

While I was out with the dogs tonight, I was thinking about how much fun it would be for all of us to plan a trip to the beach next summer with all of the little ones (we have to plan months in advance to get us all together at the same time).  And then it hit me...like a ton of bricks...that we had started talking about the same thing a year ago for this summer. Gracie would have been the youngest at somewhere between 9 and 11 months.  That was before our friends got pregnant with the baby that was just born...that was before Gracie died...that was before everything changed.

My closest friend in the group had a baby about 4 months before Gracie was due.  I have watched all of her photo and video updates over the last year, so happy to see her daughter hitting her milestones, yet fully aware of everything that I was (and am) missing with Gracie...and constantly wondering... WTF???  WHY ME?  WHY US?  WHY MY FAMILY?  Now that the thought about beach planning has resurfaced, it is just one more thing that I can add to the list of things that I will never do with Gracie.  Sometimes I almost wish thoughts like this simply would not resurface...

I Met a BLM Today

I unexpectedly met a BLM today.  Our meeting had nothing to do with the fact that we are BLMs, in fact she has no idea that I am one.  Because of paperwork involved, I knew before I met her in person that she was a BLM, but even if I hadn't, her very subtle necklace would have given it away.  How much does it suck that we can identify each other simply by certain types of jewelery???

On a brighter note, but butterflies have struck again.  I was seeing kids at summer school today and noticed a bulletin board that some of the kids had done.  They had made butterflies out of their hands and put them all over a paper tree...I just stared at it for a minute and wondered if suddenly Gracie is like some of her friends and using butterflies as a sign.  And while we are on consistent signs from Gracie, I should mention that I saw 4 displays of Styrofoam coolers over the weekend...but I think i would rather focus on the butterflies.  

Thank You and Random NILMDTS Thing

I want to send a big thank you out to Mama G  for including Gracie in Kheri's beach party in June.  Knowing that Gracie is remembered by other baby loss families does wonders for my heart and gives me a few much needed warm fuzzies.

Some of you may be long enough followers of my blog to know that I have been involved in the fire service for a long time.  Because of that, I am acquainted with a lot of people from all walks of life.  I am currently treating a friend who is a paramedic supervisor in this region; during a recent treatment session our conversation took a very unexpected, almost bizarre, turn.  For some reason we started talking about baby loss - I think we actually started talking about having children/babies with disabilities (he happens to be L's father), and I think we just ended up at Gracie.  When we were talking about Gracie, he looked at me - kind of out of the blue - and said  "You know, you'll appreciate this.  You know Bill Jones (name creatively changed because I don't have his permission), right?  Did you know that he takes pictures for Now I Lay Me Down To Sleep?"   


I am familiar with the person to which he was referring, as he used to be a 'ground' paramedic locally before taking a job as a flight medic at a regional medical center in this area.  Because he is a paramedic, and not a photographer, I was really confused.  I was also really confused about how L's dad knew what NILMDTS is.  So that is where I started with my questions.  He admitted that he didn't know what it was or that it existed until he was talking to 'Bill' one day.  He told me that 'Bill' was really into photography, which I did not know.  (I have since learned that he has invested a fair amount of money into his photography hobby to purchase equipment that would rival some professionals.)  He was apparently looking at some of 'Bill's' work one night, and the stuff that he was looking at included some photos taken as part of his work with NILMDTS.  They apparently spent a considerable amount of time talking about NILMDTS.   I was still confused about how 'Bill' had gotten involved, and I thought that they had perhaps experienced a loss at some point.  Nope.  No loss.  He was wandering around the internet one night, looking at different photography pages, and he stumbled into the NILMDTS website.  Apparently he was immediately drawn to the cause and made application to become one of their area photographers. 


About a week and a half after this conversation, I happened to run into 'Bill' and his wife (whom I had never met) at a carnival.  Even though we did not utilize NILMDTS services for Gracie, and even though I had no idea how to even start the conversation, I felt very compelled to say something to him about NILMDTS.  I pretty much fell over my words at the beginning of the conversation, but I told him that I wanted to just say a collective 'thank you' for all of the families that he has done work for and all of the future families that he will do work for through NILMDTS, and really for the baby loss community in general - and he looked thoroughly confused.  He gave me the 'I'm surprised that you even know what NILMDTS is' line, so at that point I knew that he had not heard what had happened to us.  I told him that I was clueless about NILMDTS until we had a 36 week stillbirth in August, and he stopped dead in his tracks.  


We talked for about 30 minutes, primarily about NILMDTS and baby loss.  He told me that doing NILMDTS work has been a profoundly touching and fulfilling experience for him and that he was so glad that he had stumbled upon their website and gotten involved.  He had a lot of questions about baby loss in general - mostly things that his experiences had brought to mind, but that were inappropriate to ask families that he was photographing.  It was probably one of the best baby loss conversations that I have had with someone outside of my 'circle'...it was almost refreshing.  And it gave me hope...that not everyone outside of the baby loss world is a complete and utter moron, and that some people really can empathize with us.

I know that at least one person reading my blog is involved in NILMDTS services...to that person, and all the others out there, I say God bless and thank you for your services. 

Happy Anniversary, My Love

Today is our 2nd wedding anniversary, and I want to throw out one more itty, bitty tribute to my husband and our life together.  Below are a few pics from one of the most wonderful days of our life together.

 

 

 Jeff picked this topper all by himself.  :-P

Happy 4th of July

I got an email this morning from someone who said that they could not see most of this post from yesterday.  With one exception noted below, I could see everything okay, even when I am not signed into blogger, but when I was edit mode today, I did get a bunch of error messages, so I am going to re-post it and see if that fixes whatever bug seems to be lurking.  I apologize for the repeat post.

I would like to wish everyone a very peaceful, happy and safe Independence Day weekend.   I hope that for all of you it was/is/will be filled with love, friends, family, fun, sun and good food...as well as the ever present spirits of your angels.

Two years ago today I was about 24 hours away from marrying the love of my life after about 14 years together...we had our rehearsal and rehearsal dinner on the 3rd and then had a nice picnic on the 4th to entertain our out of town guests and celebrate our nephew's 14th birthday.  We had no idea what the first two years of our marriage would bring.  ~  One year ago today I was in week #33 of pregnancy with our first born.  We were still clueless about what laid ahead of us.  ~  Today I am in the 29th week of pregnancy with our second child, yet there is no 10 or 11 month old baby here with us.  We still have no idea what lies ahead, but we certainly know that this is just not how it was supposed to go.  I am not super depressed or sad today...just making an observation that pretty much anyone reading this has made at one point or another.  I do wonder, though, how long it will be before I look at the babies that were born around the same time Gracie was due/born without thinking about her....without thinking about all of the things we have missed and all of the things that we will miss for the rest of our lives.

Despite the fact that my heart has been so relatively light over the last few weeks, it is not always like this.  This kind of ties in with my previously posted thoughts about wondering where my grief might wander once I am not so preoccupied by work...and where it might wander after we bring Jellybean home with us.  I think about all of the other I have met over the last 11 months and about how many of them work through portray their grief, and I wonder a lot about the open portrayal of grief, even in the blogosphere.  I think about the extreme ups and extreme downs that can come with this grief, and I think about the fact that no matter how hard some of them might try, very close friends and family can never really understand or appreciate where our grief and its process comes from.  I wonder if any of us, when outside of our '4 walls of safety and comfort' are truly able to openly express our grief and how we really feel about our losses.  Some are.  There is no question about that, but it seems that many are not.

There are some BLM blogs that are 110% upbeat with regard to grief and loss.  They are always 'glass half full.'  I think about my own grief in comparison to this and sometimes wonder why I can't get it or keep it together all the time.  I try to take advantage of the uplifting feelings that can come from these blogs, as they can be helpful in getting out of downward funks.  As helpful as they can be in that way, I have learned that they may not always be as helpful for their authors, as some of these BLMs are not free to express how they are really feeling.  This restriction is usually because their blogs are frequented by real life family and friends...when given the opportunity to express themselves in an unrestricted/uncensored forum, it turns out that these women usually spend as much time as I do feeling not-so-upbeat about this grieving process.

Flipping the coin over, there are some BLMs that really seem to struggle hard to get through this process.  We have all had different experiences, so none of us will have the same grief process, but some of the women I have met here really seem to struggle...almost on a daily basis.  While the basic components of our grief is the same, their struggles seem to be exacerbated by all kinds of different things...pre-existing emotional difficulties; family, friends, co-workers that expect the grief to end with the flip of a switch; multiple losses; infertility subsequent to loss; the list goes on and on.  I feel so helpless when I read these women's blogs...I so much want to say something to comfort them, but know that there are probably no words at all that will bring much comfort.  What I have learned is that many times these women's blogs are private with regard to family and friends, and these women are free to throw out any thoughts or words that help them feel better at the moment they are writing.  Many times these posts are a 'snapshot' written at the height of a particular emotional event and they are also not a 100% accurate portrayal of that person's grief, just as the always-positive posts are not a true portrayal of grief....but they truly serve the purpose of getting it out and aiding in the healing process.

I don't know...perhaps none of that rambling makes sense.  If it offends anyone, I apologize...I am just rambling and trying to sort out some of my own thoughts in a forum that I know is not likely to crucify me for doing so.  I guess what I am beginning to realize is that no matter how we portray ourselves, I think when we boil it all down, so many of us struggle to maintain a healthy balance between the ups and the downs...and so often we struggle with how to balance the expression of the ups and downs, especially when dealing with our real life family and friends who will just simply (through no fault of their own) never understand.

(As I was reposing, I found that this paragraph was completely not visible on my blog - having it visible will probably help in the remainder of this post making sense.  Ugh.)   In thinking about all of this, I also think about the things in life that are certain to bring me up or down.  This also includes the 'new' things that bring me up or down over the last 11 months.  Since I haven't done a 'weekly' list in a while, I figured that I would do so now, and kind of share some of these things.  Feel free to share some of yours with me and others if you wish. 


The things that consistently bring me up are:

• My hubby - we have been together for about 16 years, married for two.  We have absolutely had our share of ups an downs, even before we were married, but I am confident that there is nothing that we cannot conquer together.  He truly is the love of my life.
• Softball - I started playing as a little girl and played for about 11 years.  For several reasons, I did not play in college, but should have.  It's a decision that I will forever regret (just a little bit), but one that I cannot change.  Although fast pitch is my thing, I still thoroughly enjoy a good slow pitch game every once in a while. 
• Making music - I was a song bird and band geek in high school.  I am certainly far from being 'over gifted', but I can hold my own in either realm.  I have not been part of an organized musical ensemble in about 10 years, and I miss it tremendously.  I have been without a piano for about 12 years, and oddly enough, I think that having a piano might have made a huge difference for me in the early months after Gracie's death.  It was always a means of stress relief for me, and I wonder what difference it might have made during this process. 
• QT with my sister -  we are 4 1/2 years apart in age, but we have always been close.  She left for a 27 month assignment in Africa with the Peace Corps two weeks after Gracie's funeral.  She wasn't supposed to be here for her birth, but as things worked out, she was.  I am so glad that she was.  I am so sad that she will not be here in September.  I am looking forward to her return to the U.S.
•  Success/accomplishment in the things that I do - For me, this kind of doesn't require a lot of explanation...it is sufficient on a general level.  I take everything I do seriously - there are too many things to do in life to just waste time not being the best you can be.  This includes academics, music, sports, my participation in the fire service, owning my own business, personal relationships and so much more.
• Family gatherings not overshadowed by drama or negative vibes - Unfortunately, where my family is concerned, this is hard to come by, but I love it when it happens.  :-)

Things that  consistently bring me down

• Constantly negative people - we all have our down moments, but I cannot handle being around people who can never find anything positive or upbeat to talk about, anticipate or be part of.  I find people who are negative all the time to be exhausting. 
• Drama - especially small town bullshit drama...yet, I will forever live in a small town.  While it's sometimes entertaining to see the things that fire people up and get their panties all bunched up, most of the time it's just exhausting. 
• Working to much with too little pay -  I feel like this has been the story of the last 5 years (since I opened my own P.T. practice).  I know that I am making headway, and that it's all good, but it just feels like it's taking forever.  I will include with this the lousy salaries paid out to many emergency personnel in most parts of the country.  If your job involves lights and sirens, you should be compensated well for that...you just never know what you are going to deal with from one day to the next.  
• Living so far apart from the best friends I will ever have in my life - there is a distance of 2-3 hours between where we live and where most of my friends from college live.  Now that we are all starting our own families, it makes getting together on a regular basis very difficult.  I miss them all terribly...
• Knowing that other BLMs are suffering through difficulty TTC, infertility and subsequent loss.

There are some things that now go on the list titled "Things that usually bring me up, but sometimes bring me down".  That list includes...

• Seeing Gracie's name in 'writing' 
• People talking about Gracie in a way that acknowledges her existence and presence here in the world, and her importance in our lives
• Thinking about the rest of the children that we hope to have
• Family gatherings with other children
• Babies...especially those within 4 months of Gracie's age 
• Reading other loss and rainbow blogs - I hesitate to put this on the list, but I really need to.  As helpful and beneficial and therapeutic as it has been for me to read so many loss (and now rainbow) blogs over the last 10-11 months, I think that rehashing grief through other loss blogs might sometimes be more of a weight in my own grief process. I think it depends on the day and how I am feeling at any given moment, but I think I have reached a point where reading loss blogs might not always be beneficial. 

In closing, I will remind you all that I am taking questions in anticipation of my 100th post.  I have gotten a couple by email, but none on the blog.  There is also another month to comment on my questions and give-away post to register to win Gracie's birthday give-away.  I am hoping to give away a gift certificate for The Midnight Orange, but may have to come up with a Plan B.  I would also like to congratulate Maggie and Kristin on their rainbow announcements.  Wishing you all a peaceful and 'up' week....and, as always, thinking of all of you.