So after many many months of not writing here I am staring at a blank page….ready (I think)...finally.

My heart is heavy today as I can feel my mind race, and fragment.  It is hard to maintain a single thought, or take a single breath without wanting to shed a tear.  Three years ago I lay in my bed with my daughter, and I watched her every breath, every movement.  I was so consumed by her that I could nearly feel her pain.  I could not eat, because she could not.  I could not drink because she could not.  I could not sleep because I would miss her last moments.

There is not a time in my life where I was more aware of everything around me, and yet nothing at all.

When I think back to March 31st and April 1st of 2011 I know that those days are days that will forever be burned in my mind somewhere.  My Zoë's pink eyelids, her pale skin, her sweet hands.  These are the things that I miss most.

Zoë made me a mother.  She made me a better person.  She made me fall in love deeper than I had ever been before.

Time has passed so quickly as it will.  It takes with harshness, and sounds, and softens memories.  But it will never take my love.  It will never calm my quickly beating heart when I think of Zoë.

…

In Esmée's room, above her changing table mirror is Zoë's name.  Because once upon a time that room was hers.  Esmée likes to stand up, and pull the "Z" off of the wall, and I tell her, "Please put that back, don't touch, that is Zoë's." And in her soft, sweet child's voice Esmée will say, "Zoë.".  And every time I am nearly brought to my knees…as I hear the sound of my daughter saying her sister's name.  I pull in a sharp breath, and I try not to cry…and I say, "Yes honey, Zoë."  I take the "Z" from Esmée's hand, and I place it back on the wall.

I know that someday we will change up Esmée's room.  It will probably be repainted.  It will probably become a teenagers lair.  With giggling girls, and music posters, but to me, it will always be that yellow room where I rocked Zoë the first night she was home with us.  Where I cried happy, emotional, exhausted, tears, and I told her all about how much I loved her, how much she was wanted, how I would do anything to protect her.

…

I have André now just 5 months and 1 day old.  In 10 more days he will be older than Zoë ever was.  He will be bigger than his oldest sister in so many ways.  As I nurse him, and cuddle him, and tickle him I cannot help but think to myself just how blessed.  How amazingly blessed I am to have this chance yet again to nuzzle a baby born on the second to last day in October.

I cannot wait to hear him say "Zoë".  I know that it will feel like a swift punch to my chest the first time.  I know that I will suck air into my lungs and say, "Yes honey, Zoë".  I know that I will cry later when no one is looking hearing my baby boy's voice in my ears.  I know that I will tell Zoë how much I miss her.  How much I love her.

Mommy loves you.  Yes she does.  Yes she does.

I have been debating whether or not to write about this topic for a while.  This is not an easy or light topic to broach, and there are so many people out there suffering from such sever forms that I wonder if I am being too sensitive, or if my experiences even fall in this category.  However, lately I have been experiencing more and more symptoms that to me are stressful enough to place myself among others who are suffering from PTSD.

There are two reasons why I want to talk about PTSD (Post-Traumatic Stress Disorder), one is because I want to show how it can creep into your life even long after you thought you were over the worst of a situation, and two, because it is not always easy to tell if someone is suffering from something like this.

Did you think that I was?

I didn’t…

Not until a night earlier this year when Esmée screamed like I was beating her all the way home from Natick, Massachusetts.  A drive that takes anywhere from 45 minutes to 2 hours.  That night it was raining so hard I could barely see out of the windshield, and Esmée’s screams only seemed to escalate.  My heart was racing, and I could barely breathe.  It felt like I had been punched in the chest.  My mind raced and raced, every image of Zoë that I have stored in my brain came flooding back to me.  Before I knew it I was begging Esmée to please stop crying.  I nearly welled up myself, but I sucked in the biggest breath I could manage and I told myself, “NO!”  I was not going to let myself be hijacked, I was not going to let the adrenaline, and flashbacks take over.  What I needed was not to shut down, but be there for Esmée.

So I did all I could do to calm both Esmée and myself.  I turned on the radio and sang along to anything I could.  I let the music carry me away to better thoughts, better thoughts with Zoë, and attempting to create better thoughts  for the future.

Lately Esmée has been going through a time where she is waking in the middle of the night to play.  This happens in children who are on the brink of a large breakthroughs.  As they begin creating new neurological pathways in the brain and as they gain a new skill they will be excited about it, and want to practice, even in the middle of the night.  In Esmée’s case this is because she is on the brink of walking.

While one part of me is thrilled that she is not only developmentally on target, and showing that she is excited to be learning, the other part of me barely copes with her night time crying.

As I hold her, rock her, or walk around her room with her I do it with my eyes held wide open, because the moment I shut my eyes I am back in the dimly lit hospital room holding my baby hooked up to feeding tubes, and wires, and monitors.  I am transported.  I am barely able to stand.  I can barely sing to her…I cannot think of the words to nursery songs, and I dread the songs that I sang to Zoë popping up from deep within my consciousness.  I hum…I plead with her in my head.  I often times calm her by bringing her to bed with me for a bit of night time nursing until I can return her to her crib asleep.

I don’t want to look back on Esmée’s infancy and think that the moments where she was most upset, and needed me most as the moments where I could not handle her.  I don’t want to be distant and distracted from the present moment with her. 

When I was in the hospital with Zoë I made a conscious effort to stay present in every moment.  To live as fully as I could, and to absorb and remember everything.  I did this because that was all I had of her.  The hours of her crying and screaming, and being sick, and unhappy are some of the only hours that I got with her.  So I had to embrace them, and I had to do my best to cherish them.

I don’t want Esmée to be a trigger; I don’t want her crying and screaming to be the catalyst that transports me back to a time when I was so full of anguish, and pain.  I want to be able to embrace those moments with her like I did with Zoë.

Their are a  few positives that come from this post-traumatic stress, it reminds me that I am continuing to move forward along a healing path.  I believe that this is my mind and bodies way of squeezing out the stress, and anxiety.  It makes me aware of how far I have come, and how far I have to go.  It makes me grateful that Esmée is not a sick child, and makes me aware of just how lucky I have to only have this stress on occasion, and not daily.

Most of all it makes me want to be a better mother.

I believe that this stress and flashback moments that I am having will eventually fade away as Esmée grows up.  She will continue to cry, and have fits, but they won’t be the crazy infant fits, they will be the willful toddler fits.  I look forward to those.

I also think that I need to work more on being alright with being left alone with myself, and my thoughts.  I used to meditate, and since Zoë was diagnosed I have not even dared to really and truly clear my mind and meditate.  I hope that I can get back to meditation, and the peacefulness that it can bring.

Hello 2014.  A new year, and fresh start.  Time is moving forward at a nearly uncomfortable pace.  I want to scream, “SLOW DOWN ALREADY!”  But time listens to no one.

So 2013, I overcame the terror of the first year without Zoë.   It was one of the hardest days of my life, but with Esmée’s fast arrival I sneaked past that date distracted. 

Then came Esmée’s time to grow older than Zoë.  I felt like I was holding my breath the entire day before.  I wanted to check in on her every 20 minutes the night before just to make sure that she was still breathing.  But the morning came, and she popped awake happy and HEALTHY. 

Zoë’s birthday, Thanksgiving, and Christmas stack up upon each other all at the end of the year, Boom, Boom, BOOM.  I barely have enough time to recover from one before another one hits me.

My silence this past Holiday season was mostly due to my constant state of feeling like I was trying to glue my world together with bits of sap, and gum.  We brought Esmée to have her photograph taken with Santa.  It hit me as we were standing in line that I only had one of my daughters with me.  I think the only reason I managed to not run out of the mall was because I had Zeppo there with me.  I wanted to scream out that I was missing my daughter. 

I was relieved in a way that the Santa was not the same man from two years prior.  Then that thought, two years ago. T-W-O years.  It would have been Zoë’s third Christmas.  This just echoed over, and over, and over, and over again in my head that whole day, week, and month.

Christmas day came, and I did my best to hold myself together amidst the revelry.  All I wanted was to lay down where I was and sleep.  To dream away the day.  But Esmée would turn to me, and grin with those bright gray eyes, and I would smile and know that she is my glue, my bits of sap, and gum.  She kept me together.

What pressure to place on your child (whither or not they are aware).

So here I am in 2014. 

I am on the brink of having a nine month old.  In only a few more days (January 18) Esmée will have been on the outside longer than I carried her on the inside.  She is growing and changing so quickly I can barely keep up.  With this I know that I need to work on me, before she realizes how much I lean on her.

I cannot use her to glue me together.  She is a great source of comfort, and healing, but I also need to stand up on my own, and pull myself together a bit more for both of our sakes.

Today is Zoë’s birthday. It is a day that can fill me with extreme sadness, yet this post will not be about that.  I don’t’ want to bring you down…I don’t want to bring me down.  Instead I want to tell you about what Zoë has provided for me in these moments where I am saddened by her absence.  Zoë gave me you.

Zoë opened up the hearts and minds of more people that I know, and even more people that I did not know, and still more people that I have yet to know.  She made you aware of how fragile life can be, and how to live with a fire in your soul.  She brought me friends from all around the world who are willing to spread her message, and who have taken it upon themselves to do great things in her honor.

We have Team Zoë, which is not only people who have donated money and items for auction, (which was/is overwhelmingly generous, and we cannot thank you enough), but people who support us with hugs, prayers, messages, letters, emails, and check-ins.  It is people who send little packages from far off distant lands just because.  It is people who do mud races, road races, and have begun exercising along with us to better their lives in the pursuit of health, and kicking cancer’s ass.  It is the people who check out my blog, and who watch my Facebook page from afar.

Zoë gave me a community of people who prop me up when I am most weak, and make me feel strong when I have exhausted the last bit of energy.

Zoë gave me a cause to focus on when I need to focus my energy on rough days.  Today in her honor Zeppo, Esmée and I will be going to Children’s Hospital in Boston to drop off gifts I bought.  I cannot buy gifts for my two year old daughter, but I can buy gifts for two year old children.  So today we will drop off some toys, buy some balloons, and bring some goodies to those amazing nurses on the sixth floor.  We will celebrate as best as we can in a place that preforms miracles every day.

Zeppo and Esmée and I will also have a tour at Fenway.  This is Zeppo’s happy place, it is a place that has a lot of meaning for us as a family.  It is a place where I will let Esmée launch her first balloon for her sister.  We will cry.  We will remember.  We will smile, and laugh, and love.  We will do all of this knowing that we have you watching us from near and far, sending us your love.

I cannot thank you enough for your continued support.  I cannot thank you enough for your love and hugs.

Happy Birthday my Darling, my Peanut, my Zoë!

Mommy loves you, yes she does, yes she does.

Love and Hugs

I have new revelations nearly weekly regarding my experience being Zoë’s mom, being the mother of a child with cancer, and being a parent who lost a child.  These revelations are often shocking to me at first, then I think about them for a while, and I realize how normal this must be.  It is so much easier sometimes to see what has happened from some distance.

My revelation about Zoë’s size, and health (revisited):  Hearing that my child had cancer should have cued me into the fact that she was in fact, not healthy.  But for whatever reason I somehow managed for a long time to disconnect her overall development (growth, or lack thereof), from her medical condition.  It is only now looking at how plump and healthy Esmée is that I see just how sick Zoë was (especially when comparing photographs).  This is not a new revelation (and clearly it is something I am still struggling with)…but what is new is that now I feel like I have some form of sick and twisted power to see illness in other children.  As children are added to Facebook with messages for prayers and hopes, I cannot help but look at these pictures of smiling children afflicted with a myriad of illnesses and not just see a beautiful child, but to see a very gravely ill child. 

These children stick out with common features.  Their smallness, their wise eyes, their bony thin fingers and wrists clutching at their toys.  I can barely look at their images because I fear that becoming attached to a child with a grave illness will only lead me to sadness.  It is almost as if I no longer believe that children can get better from cancer, or heterotaxy syndrome, or a plethora of other diseases that primarily affect children.

To coincide with this I also realized how little discussion there was regarding the height/weight growth chart for Zoë.  Something that Zeppo and I gleefully make bets about regarding Esmée’s development was barely hinted at while at Children’s Hospital with Zoë.  I can only remember one time where a chart was brought up on a computer screen, and the doctor noted that Zoë was not really up on the chart…but that it was alright because of her condition.

Were the doctors purposely not discussing the fact that Zoë was not on the growth chart because they knew that her cancer was so insidious that it would probably take her life?  Did they just want to spare us the worry and concern because she was not growing? 

In many ways I am so grateful that this was not a focus during her life, and treatment.  I don’t think that I was held in the dark, but I am glad that I was not stressed about it.  But at the same time I feel so sad that it is only a year after her passing that I realize how the doctors were sheltering us a bit.  It is sad that we needed this sheltering…yet I know deep down the doctors made the right call.  We really did need that sheltering.

I am sure, in fact POSITIVE, that if Zeppo or I asked about any of this information the doctors would have done their very best to inform us, and I don’t think that they withheld any information from us during any of the steps in the care for Zoë.  I want to be clear that I just think that they were careful to not stress, or bring up topics like her height/weight unless they had to.

My revelation about how I handled those moments after Zoë passing away:  I was listening to an episode of The Moth Podcast this past weekend, in which Sebastian Junger spoke about his friend and fellow photojournalist’s death.  He said, “…and I felt nothing.  I was hollow again…completely hollow, I felt bad that I didn’t feel bad.  I was in shock, I mean, I realized later I was in shock, and um, you know it spares you for a little while the things you are going to have to feel later.”

All I could think was, “Wow.”  I know that feeling.  I know that complete hollow, non-feeling feeling.  That feeling where you know you should feel something; that you are pleading with yourself to feel anything, but there is just nothing.  And then….it rushes in.  The pain, the intense grief.  The complete horror.  It was shock!  I was in shock!  How is it over a year later I am just realizing that I was in shock?

Upon reflecting on shock.  It is just as Mr. Junger says, it spares you for a little while.  I am grateful for having been in shock, because without that time of displaced emotions I would not have been able to function for myself, or for Zeppo. 

This revelation has also helped me come to terms with those days where I was in shock, because for a long time I thought perhaps I was being robotic, or cold, or somehow not feeling what I should have been feeling in that moment.  But now I realize that I was feeling exactly what I should have been feeling in that very moment.

If you look up shock you can find many definitions.  The state of circulatory shock and emotional shock are remarkably the same.  When the body is experiencing circulatory shock the body is deprived of enough oxygen to sustain life.  During emotional shock the body is flooded with adrenaline, and  noradrenaline, and the person is emotional constricted.  The field of consciousness is narrowed, and it becomes harder to comprehend what is going on.  Confusion, impaired judgment, detachment, and depression are all common.  Amnesia either complete, or partial can also happen.  The symptoms can appear in a matter of minutes, and can last for days.

Yet again I am reminded how amazing our bodies are.  How our brains sensing our inability to process what we are seeing, hearing, experiencing physically and emotionally, will just flood us with hormones that will protect us.  That it will allow us to even forget. 

I have not forgotten one second of those last days, or those days just after Zoë’s passing, but I do know that my body did its best to protect me.  It allowed me to drift in a sea of adrenaline, and noradrenaline.  It cushioned the blow, and as it let me down into my grief it did its best to protect me from myself.

My revelation about revelations:  I am truly a believer that I am not the first person to experience anything.  Nearly every aspect of my life has been lived before by hundreds, thousands, tens of thousands of women before me.  What helps me is using others experiences to understand my own.  Like that of Mr. Junger.  I am forever seeking guidance to understand my life, and my experiences.  To comfort myself?  Perhaps.  But it is this curiosity to know more about myself that I hope in turn can help others.  I hope that my honesty, and my acceptance to feel then explain my feelings will help others who have not had my experiences, to understand not only me a bit better, but those around them.

So in the past few weeks I have encountered the same statement from several people that basically sums up as, “I saw you but I did not say hello because I don’t know what to say.”  Or, “So and so does not know how to talk to you because of everything you have been through.” 

Let me start by saying that losing a child is an isolating experience.  It is difficult because first I have to figure out how to relate to people, and now people have to figure out how to relate to me I guess.  That second part was something that I realized deep down…but hearing that people are actually having problems coming up to me saddens me.

So where do you start when you want to approach someone like me?  You want to acknowledge my circumstance, probably say a few words of condolences.  But then how would you talk to me about everyday life…which now seems trivial if you just gave condolences regarding my situation.  Am I correct?  You see, I am equally just as awkward regarding this situation.

 So what do I do when I run into someone who lost a child?  I treat that person like how I would want to be treated.  I don’t avoid them, or distance myself from them.  I let them take the lead regarding the loss of their child.  If they bring it up then we talk about it, if they don’t bring it up then we don’t talk about it.  We talk about everyday things, we talk about our lives, and we laugh a lot.

I am not shy.  I am obviously not a private person.  I am rarely taken aback by anything said, as I don’t underestimate what can be said at any given time.  So trust me, you can’t say something that I have not heard before.  You can’t hurt me by talking to me.  But it does hurt knowing that there are those people out there who are not talking to me.

If anything this is a time in my life where being surrounded by people I love and know is so important to me.  I miss you!  I love you!

So I hope I hear from you soon!! 

So we all know (or at least most of us do) that one child cannot replace another.  However, I have encountered a moment today while returning to work where I felt like I was replacing Zoë.

On my computer screen I have had the same image of Zoë holding a bottle.  This picture was taken the very first (and last) day that I returned to work during Zoë's life.  Zeppo had such a hard time that day trying to get her to eat.  He tried everything, and finally in frustration he set her down in her crib, and tried feeding her there.  It worked.  Or at least it did until she fell asleep.

Every day I worked in my office I started up my computer to see this photograph.  It reminded me of just how headstrong Zoë was, how determined to get her own way.  How beautiful she was, her long fingers, and soft hair.

I told Zeppo how as much as I love this image, I also want to have a photograph of Esmée on my computer’s desktop.  But how to remove one image for another?  Most parents alternate images of their children all of the time, as new milestones are met, as fun days at the zoo, or the park, or beach are captured.  The photos of the firsts, the first time walking, the first day of school, the first lost tooth. Parents are perpetually proud of their children, to the point where they will talk non-stop about the most teeny and mundane thing, and will over share their photo albums with anyone who can see, (if you cannot see the parent will be sure to describe the photograph in such detail that you will wish you could not hear as well).  Images of our children are a way to gloat, and share, and love them when we are away from them.

By removing Zoë's image I feel like I am relegating her to some strange level of limbo because Zoë now mostly lives in images.  I have a finite number of these photographs and I won't be able to put up new ones of her as I put up new ones of Esmée.  It almost feels like I am relegating her to the back of the bus.

Now I know many of you will send me messages saying, “Oh no Laura, don’t feel that way.  You are not replacing Zoë.”  Now I know this.  My rational brain understands this is not the case, but I don’t have Zoë running around to remind me of her.  She is not here talking to me about random baby things, or demanding my attention.  The only way Zoë is capable of capturing my attention is when I think of her, when I am reminded of her, or when I see her image.

Zoë’s photographs are so important to Zeppo and I that we have them saved on a special drive, and it is locked in a fire proof lock box.  They are on several computers, and thumb drives.  I also know that we don’t have all of the images that were ever taken of her.  My family has some on their computers, and phones that I hope to over time get and add to what we have.

In case of an emergency besides Esmée I would be desperate to grab Zoë’s photos.  Everything else in my house is unimportant.  That is how important these images are to me.

So back to my computer….how can I remove this image of Zoë?  Well I take a very deep breath.  I say, “I love you baby.”  I click on an image of Esmée, and in a blink of an eye Esmée’s picture is on my desktop.  But before I do all of this I print out an 8 1/2” X 11” copy of Zoë holding her bottle, and I attach it to my desk so every day when I work in my office I will sit down and see my head strong, brave little warrior.

Mommy loves you baby girl.  Yes she does.  Yes she does.

Here is what my new desktop looks like at work. Esmée and her two fuzzy cats.

It was suggested to me recently by a well-meaning close friend that perhaps I should look up a book that she read regarding only children.  There is a chapter that discusses, “replacement children”, she tells me.  I cringe.  She goes on to tell me about how after losing a child some people have a child to “replace” the first, and that child often grows up with issues stemming from the inability to live up to the parents expectations, or feeling like they have to be better or best at everything for their deceased sibling.  I cringe.

Her suggestion to read this book was because I have written recent posts about my struggles to both keep Zoë alive in my heart, mind, and soul, while simultaneously raising Esmée.  She was suggesting it to let me know that I am not alone in this struggle, and there are others who have issues not passing along psychological problems to children born after a sibling has passed on.

I appreciate her attempt at this well-meaning advice, and I do not cringe at her giving it to me.  What I cringe at is the author’s term, “replacement child.”  How icky is that!! 

So let me start back from before Zoë was diagnosed, or before we knew anything was wrong with her.  Before our lives were turned upside down Zeppo and I had discussed that we would, (when the time was right), give Zoë a sibling.  Zoë’s sibling is Esmée, and she showed up just a bit too late to meet her big sister.  However, she was wanted long before cancer rocked our world.  Long before Zoë was even born. 

I have always wanted three children.  Zeppo wants two.  We shall see where we end up, but no matter what Esmée has not, and will not be a “replacement” for anyone, especially her big sister!

Now to combat Esmée feeling like she has to “live up to”, her sister’s legacy.  Well, Esmée is on her own journey through life.  She is shaping her own world, and quite frankly to be blunt, it is not hard to surpass the accomplishments of a five month old.  So yes, Esmée will do, say, and become her own person not in the shadow of her sister, but hopefully with the messages that Zoë left behind.  To love, and live as hard as you can, because life is SO short.

Losing Zoë left a hole in our lives.  One that cannot be filled with Esmée, or any other child.  It is a Zoë shaped hole, ten pounds of flesh and bone, of sparkling eyes, and gummy smiles.  I will always have a child that is five months ten days old, even when I am eighty and someone asks, “how many children do you have?”  I will say, “I have a five month old, and a forty-seven year old.”  I also hope that someday I will have a sibling for Esmée to add to that count.

I have dreamed of three children, and who knows if the wind blows in my favor I might just get another baby someday, (when the time is right).

As for not passing on those psychological issues onto Esmée, or her sibling(s).  I think that part of my lamentations of late are because in all reality Zoë passed away only fourteen months ago.  As time passes my grief and morning will change.  Although it will never go away it won’t be so raw. 

Right now Esmée is not of an age that she can understand when Zeppo and I discuss Zoë.  How we miss her.  How we are dealing with our grief.  Zeppo and I talk often about where we are, what we need…  We still check in, and we still support each other.  The best part of my day sometimes is hearing Zeppo tell me about how something reminded him of Zoë, or how he took pause to remember something.  These conversations are private, and personal.  They are times when we can tear up, and cry until we smile.  They are not for Esmée. 

As I have discussed before Esmée will be well aware that she had a sister before her.  But all of our conversations will be age appropriate and organic.  The time will come when I have to discuss big concepts to a little girl.  I don’t know how it will go, and I don’t plan what I will say.  But I do know that Esmée will not ever think that she is here because she is a “replacement”.