FURTHER ON DOWN THE ROAD

SILENCE

I write this entry knowing that it might be the last time that I post here in this space.  I decided to write it because of the potential for increased reader traffic over the next few weeks, and a strong sense that the written account of my grief journey should somehow be neatly wrapped up instead of just trailing off with no ‘ending.’ That said, I have contemplated taking this blog from being strictly grief oriented to 'life in general' oriented, but I know that I don't have the time to do so right now.  I guess time will tell....

For the first three years following the stillbirth of our daughter, this blog was one of the only things that kept me sane.  I came here to purge my emotions and say anything I needed to say without having to worry about fallout with those around me.  It was a way to connect with other loss mothers, to both offer support and find support when I needed it.  For the last two and a half years this blog has been silent.   

There has been no activity here for multiple reasons, but certainly not because I have had nothing to say.  In fact, I sometimes walk around with a blog post or two swirling around in my head, but there simply hasn’t been time to get them down in writing.  Life has been busy (and getting busier), and there have been other things more pressing that blogging, even with fully composed posts taking up valuable space in my head.  Perhaps another reason for my silence is the fact that eventually, there is nothing new to say; everything becomes a reiteration of thoughts and feelings already expressed at some point in my previous 200 posts.  And I think that, even though some overwhelming moments have occasionally made their way to the surface, for the most part, the acute phase of my grief has been consistently waning over the last couple of years.  So even though those rouge posts and a few new feelings have been floating in my head, there hasn’t been a critically overwhelming need for me to purge those words and feelings.  It would have been nice to do so, but that overwhelming need just hasn’t been there…..most days.  

 

YOU CAN SURVIVE AND YOU WILL SURVIVE

In the beginning, when your wounds are fresh and deep, everyone tells you that life goes on, but sometimes that is the hardest part about grief.  Especially baby loss grief.  Going on is seemingly impossible, especially in the early days.  The path ahead seems too long, dark and full of pit falls.  For me, the darkest moments came in realizing that my initial support system could not (or, in some cases, did not want to) relate to or understand the depths of my grief.  Darker moments came as my shrinking support system returned to normal life and routine, leaving me feeling like the universe was spinning out of control around my little world, which had completely stopped turning.  Equally dark moments came in realizing that my husband’s grief process was nothing like my own and I had absolutely no idea what was happening in his world, nor did he know or understand what was happening in mine.  

As I have walked this path and moved forward, I have fallen down.  A lot.  Especially in the first year or two.  But over time the darkness was slowly replaced by light and I realized that the path was not as impossible as I had initially thought.  The light came in the form finding a fantastic perinatal loss support group locally, but also in discovering online resources and ‘meeting’ people who could relate to and understand my grief.  Brighter light came in realizing that I was not alone.  The support of the online baby loss community has been invaluable, and I have been so fortunate to find some amazing friends who have made walking this path so much easier than it could have been.  Knowing that these women will be there with me for the remaining steps makes the remainder of the journey seem entirely possible. 

(Some of these words were borrowed from my friend, Dawn, because sometimes she lives in my brain and gets the words out before I do….)

                            

HEALING….SOMEWHERE OVER THE RAINBOW

My husband and I waited way too long to get married, and consequently, we waited far longer than we should have to have kids.  We established long ago that we wanted three kids and that the last kid had to be born before he turned 45.  (Yeah.  We’re old.  We made our deadline with only 53 days to spare!)  He was 39 when Gracie was born, so we didn’t have much time for healing before jumping back in and trying for our rainbow babies.  There was exactly 5 month between Gracie’s birth and the start of our next pregnancy, and emotionally speaking, we were not even close to being ready for a subsequent pregnancy.   It was the most nerve-racking 39 weeks of my life, as I was constantly waiting for the other shoe to fall, but thanks to a fantastic midwife who actually got it and the support of other baby loss parents who understood what we were going through, we made it to our rainbow baby without any additional (serious) emotional damage.  Since then, we have rounded out our family with two additional healthy rainbow babies.  They are my world.  They are my light.  They will never replace Gracie, but they help to heal my heart a little more each day, even now. They constantly make me wonder what 5 year old Gracie would look like and what her personality would be, but I would not trade them for anything in the world.  These little girls are proof that, even when you think you simply cannot take one more day or put one foot in front of the other for even one more step, you can.  You absolutely CAN.  They are proof that there really is life on the other side of loss, love on the other side of the rainbow, light after the darkness, and joy after heartbreak.  (A few more words borrowed from Dawn.)

Beyond the healing that has come simply with time and the arrival of each of our rainbow babies, we have worked to bring some positive out of our loss. As our society slowly starts to break the taboo and people slowly start to realize how common pregnancy and infant loss is, my husband and I have felt a strong need to help people understand the best ways to support friends or family who might experience loss.  More specifically, we want to instill in people how to not be stupid in their attempts to offer support (and if you have walked this path for any length of time, you will understand that statement).  We want them to understand that, unless they have walked this specific path, they don’t and can’t understand…and sometimes a simple “I’m sorry for your loss” is far better than trying to say something profound.  Additionally, we are active supporters of the March of Dimes, and we are active in our hospital’s perinatal loss support group.  In April, I will complete Family Loss Advisor training in hopes that it will further improve the support that I am able to offer to families who are just setting out on this journey.  

WHAT GOES FORWARD WITH US

I have weathered and gotten through the worst parts of the storm, as has my husband, but we took very different paths in getting to the other side.  At times our paths couldn’t have been further apart, and there were moments that it seemed like we were moving in opposite directions, but we have gotten through.  Together.  There should be no question, however, that through does not mean over.  We have accepted that Gracie is gone from physical life, we have moved through the critical and unpleasantly inevitable stages of grief, and we have continued to move forward with and live our lives, but we have certainly not gotten over losing Gracie.  We will never get over the death of our first child.  

As we have moved through the storm, certain aspects of our grief have been left behind and abandoned, but other aspects of our grief will be carried with us indefinitely.  The pieces that we will carry are not as crippling as they once were, but their presence is unquestionable.  

I still fall down from time to time.  I have a tough time reading through some of my earlier blog posts because it forces me to remember how raw that pain was.  It is difficult to watch Gracie’s videos that are posted here without crying.  It is difficult for me to watch a very close friend’s daughter, who is 3 ½ months older than Gracie, growing up and hitting milestones (like the first day of Kindergarten) around the same time that Gracie should have reached them.  This is something that will likely nag at me for the rest of my life as I watch her progress through high school and college, get married and start her own family, but I am confident in saying that it is unlikely that I will be crippled by the pain of seeing those things happening.  

While they are generally “well managed,” other pieces of my grief linger just below the surface and can be triggered with relative ease.  Again, they are not crippling pieces of grief, but still there nonetheless.  Our hospital and OB providers’ office still use the same hand soap in the restrooms that they used when I was pregnant with Gracie. The scent of the soap is burned into my brain, and even when I know it’s coming, it seems to knock me a bit off balance.  It is far worse at the beginning of a new pregnancy, and relatively inconsequential by the end of each pregnancy, but still a definite trigger.  And while we are on the topic of the hospital, there is one room on the L&D floor without windows.  Room #3.  We were in that room 2 or 3 times for pre-natal monitoring with Gracie, and we were in that room for every minute of Gracie’s labor and birth.  I have nothing but negative association with that room.  When we arrived in very active labor with baby girl #4 a few weeks ago, the only open room on the L&D floor was Room #3.  A bit of panic and anxiety set in immediately, as I refused to go in and demanded a new room.  Unfortunately, they really had no other rooms and I walked in at 9 cm. and 100% effaced, so I had no choice.  I was happy to find that the room had been renovated a bit; it had a slightly different setup on the wall where windows are obviously absent, and it had been painted a very different color.  But there was still an elephant in the room.  A big, fat, orange elephant with blue stripes and pink polka dots who was surrounded by an aura of anxiety and ‘the other shoe.’  And then, with the first sounds from my daughter, the elephant was gone.  Hours later, I realized that being in that room was probably the best thing for me.  Don’t get me wrong, I would still never pick that room again when given a choice, but I think that experiencing a successful birth in that room was part of my healing process.  Instead of associating that room only with a dead baby, I can now associate it with a short and successful labor that produced a healthy baby with an APGAR of 10.  

 I still get very nervous when people around me approach the final month of their pregnancies.  I know that loss can happen at any point, for any reason, but my own experience drives me to nervousness as their 36 week mark approaches.  Sadly, a small handful of couples that we know in real life have suffered losses since we lost Gracie.  We know from experience that we need to offer support to anyone around us who is starting out on this journey, but it quickly wakes many of the emotions lingering just below the surface.  We were ‘fortunate’ enough to have a real life friend who was able to offer us some guidance and support when we lost Gracie; a few years later she told me that, while she was glad that she was able to help and support us, it had reopened her wounds and brought many feelings back for her.  I know that she would have supported us no matter what, but I didn’t appreciate exactly how hard it must have been for her to do until we were in a position to offer real life support for others.  Ideally, I hope that we never have occasion to offer this type of support to anyone again.  I know that it is more likely that we will have occasion to offer it again, so I can really only hope that it gets a little easier the further out we get from losing Gracie.  

My nervousness also carries over into pregnancy preservation.  We did very little to preserve my pregnancy with Gracie, primarily because we didn’t realize that there was a reason to preserve anything.  No maternity photos, no belly cast, nothing.  All we have left are a few belly photos taken in our living room (simply for belly size) and 13 photos taken after Gracie was born.  Consequently, I tend to encourage pregnant women, especially first timers, to do everything they reasonably can to preserve their pregnancy…photos, belly cast, pregnancy journal, ultrasound photos, etc.  

And last, but not least, there are the very ‘little’ things that remain.  The fact that I have 4 girls, not 3.  The fact that, no matter how much joy the Bean, the Bug, and our Littlest Lady bring to our lives, one of our girls will always be missing.  She has already missed the first day of pre-school, pre-K and Kindergarten.  She will always be missing from birthday and holiday celebrations.  She will never be part of the giggles and shrieks of silliness that come from the dogpile of little girls on the floor with my husband.  She will never walk in a graduation ceremony.  She will never walk down the aisle.  She will never get to spoil her nieces or nephews.  She will never know the joy of raising her own babies.   

Although I have gone from the despair of losing this little girl 

 to the joy of raising these little girls,

 

these are probably the most important pieces of my remaining grief, and these are the pieces of grief that will likely be with me until the day I die. 

  

THE REQUISITE ENDING

For those of you who are early in your journeys of loss and grief, it is my sincere hope that reading the thoughts and feelings of those who have walked this path ahead of you can be a source of comfort and emotional validation as your journey continues.  Things may seem bleak and impossible now, but I promise that, with time, patience and love for yourself, you CAN do this.  Although it unlikely that I will continue writing here with any regularity, my door is open to anyone who needs support; I can be contacted by email or by comment here on my blog.  

To those with whom I have walked for the last 5 ½ years, I offer sincere thanks, gratitude and love.  I think that it is quite safe to say that I made it.  It is also safe to say that my journey would have been much different without all of you.  There really are no other words….

As Christmas Approaches...

I have not posted here in thirty months.  I came here tonight to write a long overdue update about life.  When I got here I discovered this post, written in December 2012, still sitting in draft mode.... 

I'm not doing so well these days.  Not well at all, to be very honest.  Most of it has little to do with grief, but I honestly have no other outlet at this point, so here I set writing while I should be doing something else.

My second rainbow was born on July 20 (2012).  As luck would have it, the full time physical therapist that had worked for me for two years left my employ on July 27.  I knew that he was leaving, but when he advised me of such, he told me that he was staying through summer, which I initially interpreted to be the end of August, not the end of July.  I started looking for a new physical therapist to fill his position in May, but had not found one before he left, so I returned to work, part time, at 10 days postpartum.  I was back to full time hours by 3 weeks.  I had a month of normal hours, and then the school year started.  I still have not found another therapist, so I am doing (well, trying my very best) the job of two full time physical therapists.  I am either traveling between or hands on with patients for 10-12 hours a day, 5 days a week.  That doesn't include most of my paperwork, which I have to do after 7 p.m.  I have had so little time that I can't even find time to sit down and pay bills for the house or the office, and now I have a pile of late notices to deal with. 

Everyone keeps saying to me "I don't know how you do it."  The truth is, I'm not.   I'm falling apart inside and out.  In my mind, it's amazing that people can't see right through me to see how bad it really is right now.  Somehow, I continue to be held to the expectation of being everything to everybody, and I just don't have that strength right now.  I just want to be me for me. 

I have no nerves left.  I start most mornings with a huge elephant of anxiety sitting on my chest because I go to bed behind, wake up further behind and know that it will be worse by the time I go home at the end of the day.  No matter how much I accomplish between the hours of 5 a.m. and midnight, I'm always further behind at midnight than I was at 5 a.m.

I spend so much time working that I feel like I'm missing every moment with my girls, and it's made worse by the fact that I know I will never get any of the missed moments back.  Knowing that I will miss every moment of the life that Gracie should have had makes every moment that I miss with Jenna and Kylie that much worse.  Worse for me and worse for them....worse for me because it creates more stress and anxiety, and worse for them because the worse the stress and anxiety get, the shorter my temperament gets.  The worse all of it gets, the deeper my feelings of guilt and hopelessness get.

I snap at my husband and raise my voice to the kids.  I yell at the dogs and cats.  There is an episode of Everyone Loves Raymond in which one of the kids calls his teacher 'mommy'.  His father and sister both asked "Why?  Was the teacher yelling?"  I feel like that mom right now.  I don't want to be that mom.  And this isn't how it's supposed to work, right?  Isn't the dead baby supposed to create that 6th sense about 'better' parenting?  Parenting with better insight, better understanding, more compassion, more tolerance, more empathy, and generally more love injected into everything, right??? 

And that is where it stopped....  I thought about just deleting this and going on to the post that I came here to write tonight, but I obviously changed my mind.  In the moment that I was writing this post, I had myself convinced that none of my feelings were related to baby loss or grief, despite the fact that I referenced 'the dead baby' in my last thought.  Reading through this tonight, I can see so clearly that most of how I was feeling could be blamed equally on lingering grief and extrinsic stressors.  Just another demonstration of not being able to see the forest for the trees...  Those damn grief trees...

Since writing that post, lots has changed.  The baby that had been born in July is now 2 1/2 years old and we had our 4th and final baby girl on January 24, 2015.  I finally hired a therapist to replace the one who had left, but we have again reached the point that both of us are working a gazillion hours per week, and we have been searching for an additional therapist for the last year.  I finally hired that additional therapist....two weeks before this last baby was born, so we are not yet settle in or experiencing any case load relief yet.  

I have made it my mission to quit yelling.  My voice still works its way to "firm" or "raised" with relative frequency, but I have long stretches (sometimes weeks) with actually yelling.  I remind myself every single day that I need to slow down the things in my life that regularly take time away from my kids, directly or indirectly, because I know that I am going to be so very sorry down the road if I keep missing moment after moment with them.  It's so hard, though, to balance a business with the need to capture those moments with the kids.... 

The good news, I suppose, is that even with the sleep deprivation that has come over the the last 2 1/2 weeks with the new baby, that utter sense of despair that oozed from the December 2012 post is gone.  I have had three full weeks off with the new baby (which is a luxury for me) and I will have two weeks working half of my normal schedule before I return to full swing.  Once the new therapist completes orientation, we will split caseloads and I can focus on other aspects of the business that should, in the long run, free up some time for me to spend with the family.