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163 Days

5/23/2013

5 Comments

 


I just went to my doctors for my 6 week post-partum check-up.  My doctor asked me all of the usual doctor questions to include questions regarding my state of mind.  Am I depressed she wondered.

I am.  But not because my body is experiencing a change in hormones, or readjusting post-partum, but because I am still in mourning.  I am reminded constantly of Zoë, and just how sick she was.  Not just from the cancer, but even before the cancer. 

Esmée is thriving, and growing, and changing so rapidly.  She in 6 weeks is nearly the same weight, and size that Zoë was in 5 months.  Zoë from the time of birth had extreme colic, coupled with the inability or refusal to sleep.  She spent the majority of her first two months crying, screaming, fussing, and just plain frowning.  Then the last three months battling cancer.

Zoë did not grow.  She did not thrive.

But what is affecting me now is this healthy baby that is in my lap, at my breast, snuggling in my bed.  Esmée is showing me just how an infant can grow, so quickly… How an infant can get chubby rolls, and be placed on her tummy without shrieking, and can be moved once sleeping from a car seat to a crib (without waking!)

As a first time mom with Zoë I knew something was not quite right with her.  I knew that her colic was more or less on the extreme side.  I did my due diligence.  We went to the doctors.  We asked questions.  We went back to the doctors.  I asked for advice from mothers old, and young.  I do not regret….  I am just sad…

I am sad that Zoë was so sick.  That she did not grow.  That she did not thrive.

My doctor asked me how I am handling this depression.  I explained that I have been doing my best to get out of the house as often as I can.   The bright sun and fresh spring weather is helping, as well as getting together with friends and family.  But there is one thing that is really keeping me going.  The thought that Esmée will live to see 163 days, one more day than her sister.

Wednesday, September 18th Esmée will be one day older than her sister.  Zeppo and I will be taking that day for us.  We will celebrate.  We will celebrate Zoë’s life, and Esmée’s life.  We will celebrate for Esmée that she will be setting her own milestones that won’t be compared to Zoë.  We will celebrate that she will continue to grow, and thrive.

I cannot help but think how often in the past year I have lived day to day, trying to reach mini-anniversaries.  How time has been chopped into new milestones (instead of looking forward to 2 months, or 3 months with Esmée I am looking forward to 163 days). 

Grief does such a strange thing to time.  Some days are so difficult.  It feels like I am holding my breath and just waiting for the day to pass.  Then other days I look forward to, I cannot get there fast enough.  What is most difficult is the inability to tell what day will strike me in what way. 

What will September 17th be like?  What will September 18th be like?

I have no way of knowing what these days will bring for me emotionally, but by creating these mini-anniversaries I have given myself days to look forward to, even if they might be difficult.

I cannot wait to celebrate for Esmée.  Sometimes I feel like I am looking at her and thinking of Zoë too much.  I don’t want to miss out on Esmée because I am focusing on Zoë.  I don’t want to stop thinking of Zoë to focus on Esmée.  What I really want is both of my girls…at once…

Since I cannot get what I want, I will struggle like all parents do to give equal time to all of my children.  Celebrating on September 18th will give Esmée a mini special day all of her own, and that I look forward to.

5 Comments

Mother’s Day in Retrospective

5/13/2013

2 Comments

 
I did not have the ability to post the post that I was writing in my head yesterday.  In some ways this is probably a good thing as I got to sit back and reflect as the day rolled along.

I watched Facebook as post, after post, after post about Mother’s Day went up. It seemed in many ways like a day where kids gave sweet gifts, and moms were thanked, and phrases of love expressed.  Which is all wonderful...but I just could not get into the spirit.

Now this might seem strange because last Mother’s Day I celebrated with my little family just after losing Zoë.  It was a very hard day, but I was happy to know that I had become a mother even if my child was no longer with me.  This year I am mothering Esmée, and yet not feeling all that joyous in Mother’s Day.

I think the reason is that I could not help but shake this feeling of sadness and empathy for those women out there who had lost babies.  Whether in utero, or as an infant, or adult children, it does not matter.  Losing a child is the most tragic event a mother can experience.  I wanted to reach out to those moms and hug them.  I cried tears for them yesterday.

Then I thought of all of those moms who are only moms in dreams.  The women who are suffering from infertility, for lesbians who are searching for a donor, for single women who just want a baby.  I know and love some of these women…and my heart goes out to them on Mother’s Day.  How hard it must be too see pictures of babies, and children, ads on television, and the radio, and gigantic one pound boxes of chocolate in the stores all for MOM.

I felt like I could not post a smiling photo of Esmée with me, without feeling a bit of guilt.  I am so blessed.  I am so lucky.  I am a mom…

Love and Light to all those out there who are moms only in dreams.  May your dreams come true.

2 Comments

Good Morning Mourning

4/13/2013

2 Comments

 
I did something in the early morning of April 10 that I have not been able to do since May of 2012.  I watched two very short videos of Zoë.  I cried.  I feel asleep emotionally and physically exhausted.

This very small event is probably some of the biggest headways that I have made in my mourning process for Zoë, and I attribute much of this to the recent birth of Zoë’s sister Esmée. 

From the moment I went into labor with Esmée it reminded me of every second of Zoë’s birth.  From the protracted labor, to the experience with the hospital staff, and procedures, to the moment when she was born.

Then here I am a mom all over again…with the phantom pain of a child who is missing.  Esmée only makes me think of Zoë more.  Every face she makes either looks nothing like Zoë (making me think of Zoë), or exactly like Zoë (making me think of Zoë).  There is not a moment when these two sisters are not simultaneously in my thoughts.

People told me that having another child would help with the loss of Zoë.  This is true in some ways.  I get to be a mom, I get to care and love a child, and do all those things with a child that my body has long ached to do since Zoë’s passing.  But what people won’t tell you is that having another child makes you morn harder, stronger, and more on the surface.  It makes you confront things that you cannot avoid any longer. 

I was able to watch the video of Zoë not because I wanted to see her amazing face, and see just what kind of an amazing spirit she was.  But because her sister, animated before me is so strikingly similar to Zoë in some regards that it has created a buffer for me to look again at these videos.

When I was first pregnant and discovered my due date was so close to April first I panicked.  I was so worried that Esmée would have to share her birthday with an anniversary that is so difficult.  Some thought it would be helpful, some thought it would be karmic, or a sign from the “heavens”. 

Now that Esmée is here, and has her very own special day of birth I am relieved.  I am relieved because I can mourn her sister on the First of April, full out, however I wish to do so, then on the Eight day of the month I can celebrate the birth of Esmée with the fanfare that it so deserves.

When I started this blog “Laura and Zoë” it was about a journey, and that journey did not end with the passing of Zoë.  I believe it has only begun.  I know that I have been rather silent in the past few months, mostly because living with functional depression, and pregnancy make for a difficult and emotional time.  I will admit to postponing much of my thoughts, and feelings.  I am not one for stuffing feelings down, or not confronting them…but boy did I.  I believe I did this almost exclusively for survival.  I don’t think that I would have been able to function had I really dealt with what was going on in the subterranean levels of my sub consciousness.

Not to mention that as April approached there were so many mini-anniversaries, the date of surgery, the day we went home post operation, the date we brought Zoë back to Children’s Hospital for the last time, the date we went home with a caravan of police leading the way…and so many more…  All of these little dates not only add up, but they came so quickly.  Almost like contractions.  Wave after wave of excruciating pain followed by a moment to breath, then more pain.

In the time that I have been quiet this does not mean that I have not been thinking of things I would like to share on this blog.  How I would like it to continue on as my personal journey, and hopefully be a place for others to see that they are not alone, or to share with family who might need to better understand what it is to go through the loss of a child.

There is one thing I can say for sure, it is true that unless you have had this kind of loss you cannot understand it.  You cannot compare it to any other kind of loss, and it cannot be felt second hand.  Much of the struggle a person goes through after losing a child is with those closest to them.  I hope to shed some light on my experience, and intern gives others out there some information to share with their loving family and friends.  Who may be trying to do the right thing…but doing all the wrong things instead.

So here I am at the end of this rambling post…and what can I say to sum it up?  Mourning…it takes time.  It takes a lot of time… and yet there are nights when you make such a huge step forward in progress that you cry joyfully on the phone with your husband as you exclaim, “Honey I watched a video of Zoë!”

Thank you Esmée for getting your mommy to open up and write again…and for sleeping long enough for me to finish this post in one sitting! 

Love and Hugs as Always!

2 Comments

Make a FOOL Out of Cancer

4/1/2013

2 Comments

 
Today it has been one year since Zoë passed away from a Malignant Rhabdoid Tumor.  On this day we would love to encourage Team Zoë Members far and wide to MAKE A FOOL out of Cancer!

Please share Zoë’s story, her website, and her image.  I would love for her website to be the most shared it has ever been today.  Let’s show the world that they missed out on Zoë because cancer research is not as advanced as it could be.

Secondly we ask you to do something for someone you know, a family suffering with the effects of cancer, a friend fighting the battle, a child enduring the struggle, with cancer.  A phone call to tell them you love them, drop off a hot meal “just because”, make a donation to a cancer charity of your choosing in their honor.  A simple random act of kindness in honor Zoë would be amazing.

Let’s show cancer that it won’t have the last laugh!

2 Comments

My Birthday in Retrospect

1/14/2013

2 Comments

 
I sat down last year in a hospital and wrote about my birthday.  Although it was only a year and two days ago last year’s birthday seems like it was one hundred years ago.

In the past few months I have had conversations with Zeppo regarding my “age”.  I don’t feel my age in several ways.  In a lot of ways I feel so much older.  Like I have been wizened beyond my years.  That I have gained access to knowledge that most people get much later in life.  I have seen more, heard more, and done more than a woman of my age should ever have to do.

It is hard for me to connect to my peers in a lot of ways.  While I sit back and watch them talk about things that I no longer have concern about I wonder if I am loosing the ability to connect.  Or is it just that I don’t feel like connecting on a superficial level anymore?  I don’t want to talk about the junk food part of life, celebrity gossip, latest fashion trends, family gossip, etc.  I also don’t want loose connections to people.

But then there is the other side of me who secretly follows the latest fashion trends, and cruses Huffington Post for the latest in entertainment news.  I have even been caught watching TMZ, or Inside Edition on occasion.  I think this part of me is the part who just wants to regress, and be immature, and to feed my brain junk so I don’t have to think.

So how old am I?  My body feels relatively my age (it is a bit under stress as I am now 28+ weeks pregnant,).  But all in all I don’t feel that old.  My conscious and subconscious feel like they are 100 years old.  Perhaps if I were to ask Freud he would say that my Id is still young, and my Ego, and Super-ego have aged.

I wonder if I will ever feel like I am working as a whole again.

I read my blog post from 2012, and man did I have a lot going on for my last birthday!  I was exhausted, and caring for Zoë who was still in rather bad shape.  Perhaps that is why this year I did nothing.  I watched television, and crocheted my birthday away.  It was almost as if I were exhausted from reading what I went through last year.  So much so that it took me two days to think about how I felt about this year’s birthday in relation to last year.

Zeppo and I have been doing a lot of nothing these past few months.  I feel like I am still in recovery.  Like I cannot get enough down time.  Perhaps some of it is because I know the calm before the storm of having a new born, and I am trying to suck in as much leisure before our little one arrives?  But I don’t think that is it at all.  I think that my Id, and Ego, and Super-ego, my body, and soul are all in recovery and physical therapy.

This year’s birthday although relaxing, and good was still lonely, because rather than caring for Zoë I could only watch as her pictures scrolled on the computer’s screen saver.  Like most days I felt like something was missing.

My daughter has been amputated from my life, and my body and mind still feel her.

So here I am 33.  Feeling very old, and very young, and looking forward to what this year will bring.

2 Comments

It’s a New Dawn, a New Day, a New Year

1/1/2013

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While most people celebrate the New Year by staying up until Midnight I prefer to wake before dawn on January 1st to watch the sunrise.  I cannot think of a more wonderful way to start the “new beginning” than to feel the new day dawn.  There is such hope, and joy, and peace as a sunrise takes place.  The wonder of what this new day will bring.  The beauty of the sky turning slowly lighter and brighter, and the surroundings slowly coming into focus.

I have received many a message from people wishing me a happy new year.  I believe most people will look back at the year 2012 and think that it was the worst year of my life.  Although I can probably categorize it that way, I am very sad to leave behind 2012. 

In 2012 I had Zoë with me.  For many months we watched her smile, and sleep, eat, and love.  I became pregnant with her sister in 2012, and Zeppo and I have reached a new closeness that not many couples will ever achieve.

My family as a whole has experienced great joys, my brother, brother-in-law, and sister-in-law all purchased homes.  A nephew was born.  Friends had children, and conceived new life.  There were engagements, and wedding planning.  New cars, new trucks, and new jobs, and new job prospects.  New relationships and new hopes. 

I know that Zoë left us in April.  But she also stopped hurting.

Zeppo told me that we were so lucky to have had Zoë in our lives because she was one of the most amazing beings to have ever graced our planet.  Zoë taught me more in 2012 than I have probably learned in my entire lifetime about the human spirit, the physical body, the capacity for love, and the will to live. 

I go into 2013 with my eyes wider than I did in 2012.  My arms more open, and my heart stretched out.  I don’t plan on making a resolution because I don’t see time as starting and ending with every year.  I don’t want to set a goal that is only one year in length.  Rather I go into 2013 with a lifelong plan to care for myself and my family, to do good works, and to spread the love and light that Zoë brought to us.

There is such a focus around the New Year to start new.  To begin again.  This in some ways it is a comforting thought, to think that we can start fresh with a new slate.  However, by so casually tossing aside the previous year be careful not to leave behind the lessons learned, the love that was shared, and the good times.  In all the rush to run away from “bad things” don’t forget.  Even the hardest event you will ever suffer is better than not being able to suffer at all.

I am so blessed to sit in my home, and watch the sun light up this new day, to feel my daughter kick as she wakes up, and to know that I am here, I am alive, and I have the ability to make this next stretch of time wonderful for those in my life.

Happy New Year to you, and yours!

2 Comments

Dear Santa,

12/7/2012

13 Comments

 
Dear Santa,

It has been a long time since I have written to you.  But I promise that I have not lost that belief in the sparkle and wonder and magic of Christmas.  This year my wish list is short.  All I want is one more second with my daughter.  One more twinkle in her eye, one more smile, one more moment.

You see Santa December 25, 2011 was the last day that my daughter had a bright and happy future.  Although she was sick, with what we thought was constipation, or tummy troubles it turned out that she was so much sicker than we could have imagined.

That Christmas was both wonderful and difficult.  We woke up early and went to my parent’s house for breakfast, and present exchanging.  Then off to my Aunt’s home for the big family party.  We passed Zoë around the room, and my Grandmother, and Aunts, and Cousins all took turns holding and cooing at her.  I will never forget the joy on my Grandmother’s face, or my Uncle rocking Zoë to sleep during the entire dinner.  His face full of peace and happiness as his plate of food grew cold.

I bought a Christmas ornament to take a handprint of Zoë, but there never seemed to be a good time to do it.  Plus she was just so grumpy, and I did not want to irritate her anymore than she already was.  So instead it now sits in its box…untouched.

When driving home we broke down and bought Zoë infant Tylenol, or something like it.  She had been screaming, and crying the entire one hour plus ride home.

That night as I feed her and rocked her she threw up, not a little spit up, or baby burp, but a cascade of stomach contents that covered me, and the floor, and her.  I had never seen anything like it before.  I just knew that something was wrong.

So the day after Christmas my mother, and Zoë and I set off for the hospital.  If only I could have known sooner…if only there was a Christmas wish, or miracle I could have asked for the day before…

Since April 1, 2012 our house has been silent.  There are no middle of the night feedings, no crying for attention, or diaper changes.  There is stillness in the air.  There is less light, as I keep the nursery door closed.   And far less hustle and bustle that warms a home.

This year my one Christmas wish is to have my family close to me.  To be surrounded by those who were there the last day we had before we knew Zoë’s diagnosis.  This year I will host Christmas dinner at my house.  I will trim a tree, and put lights up around my porch, and on my hedges.  I will warm my home with my oven, and fireplace.  We will listen to festive music, and play holiday games, and fill our quiet home with the sound of laughter and joy.

I will do my best to distract myself.  To try and calm my mind.  But I know that it will be hard because this year I don’t have a little gift to give to Zoë.  I don’t have a 14 month old toddler to keep away from the fireplace, and watch open gifts.  I don’t have her to hold as I watch A Christmas Story, as our leg lamp lights the living room window.

Santa it is just so hard to look around and not see all of those things that I am missing this year.  I know that as much as you are a miracle worker, you cannot undo what has been done this time.  So instead I ask of you for a bit of peace of mind, to calm my spirit, and to allow me to honor my daughter by not turning against this holiday.  To remember the wonderful Christmas I had with her.

I have learned that whenever you ask for something it is best to give something in return.  So this year I will buy a toy or two and donate it to Children’s Hospital.  Although Zoë is not here to open gifts there will be other little ones who would love to have a new toy to play with.

Santa if only you could grant my wish…

Love,

Laura

Picture

Our Angel Christmas Day 2011

13 Comments

Thanksgiving

11/22/2012

1 Comment

 
A truly American holiday.  It is a day where we are supposed to stop, enjoy those around us, and partake in gluttony.  A day where we are supposed to be extra generous to those who are not as blessed, and make donations to charity, and organizations that help people year round.

This is one of my favorite holidays because for me I get to see my parents, brothers, and extended family.  I get to eat a home cooked meal that my father takes days to prepare.  I get to drive through the countryside with my husband and look at the beauty around me.

This year I for whatever reason I just cannot seem to get into the spirit of the season.  I watch as so many people on Facebook post simultaneously snide comments about our country, and our political standings, and our President and their dissatisfaction with this, or that, and how unhappy they are that day because someone in a grocery line for 20 items has 22 items, or how they hate people, or how their life just sucks…then buoyantly they post their daily November “I am grateful for…”.

Our society as a whole is a greedy, self-serving model.  We are a capitalist nation.  Now this is just a fact that our forefathers rejected the idea of a monarchy and established a government where people were independent, and could if they wanted to better themselves.  This model works for us in many ways.  But what it does not do is automatically take care of those who are stepped on at the bottom.  So the government said wait a minute let us also help our fellow man.  And those people are given a wee bit of help.

We are a society who likes new shinny objects.  So much that we will stand in a ridiculous line (in the cold of deep autumn) for a deal, on the VERY day in which our forefathers granted for us to take a moment and give thanks.

I have to laugh as I read articles this month about states writing petitions to secede the Nation, and become their own countries, while simultaneously stating how they are “Proud to be American”.

Are we a grateful, giving, and charitable nation?  Is our society even capable of giving thanks?

I give thanks every day.  Charity, kindness and support for others are a daily goal of mine.  I don’t give to a food bank just once a season, or give clothes to a drive once a year.  I strive to give what I can as much as I can, and I am wealthy because of it (maybe not monetarily, but my heart feels great!).

This year some would think that I am crazy to be as full of joy as I am.  Last year on Thanksgiving Zoë and I ate our Thanksgiving meal in a corner of the living room all by ourselves.  She nursed, as I ate from a plate Zeppo prepared for me.  I had never known true thanks until that moment.  I had a husband who cut up my turkey into bite size pieces, my family talking and laughing in the kitchen, a warm fire, a roof over my head.  I will never forget the moment of looking down at Zoë and feeling more love than I had ever before.

This year I am grateful that I know I will have another chance at motherhood.  I feared the possibility that I would not be able to carry another child, not for medical reasons…just I had not been so lucky in the past.

I have heard many people say, “No one deserves this more than you”, in reference to my current pregnancy.  But really?  Is that the case?  I don’t believe so.  Deserve is a strange word.  Again I feel like it is one of those sayings that we would only use here in our society.  The word deserve means; to be worthy of: merit.  The synonyms are earn, merit, rate.  So am I “worthy” of having another child?  I don’t know that any one is worthy to take care of another human.  Let’s face it parents (all parents) make huge and weird mistakes with their children.  Most children are just an ongoing experiment, with lessons learned, and lessons to be learned.  We are fallible, imperfect, and often time (for first time parents) vastly under experienced or knowledgeable.

I don’t think that I have the right to have children than any other person who wants to be a parent.  Do I deserve this more or less than the gay couple who wants to adopt?  Or how about the teen girl who accidentally got pregnant her senior year and decided to keep the baby?  How do we rate this desirability?  I don’t think it is quantifiable.

I guess what I am trying to get at on this day of reflection and thanks is…that I am Thankful, Grateful, and Humbled any, and every day of the year.  I am so lucky to just be here.  I am lucky that life has sprung up again miraculously, and I am so honored to be surrounded by a family who knows how precious life is.

Zoë taught me what love is.  What gratefulness is.  She has also taught me to not fear death, and to respect that it will come for us all when our time is up.  So until then, to live life to the best of our abilities every day, not just one this our national day of Thanks.

I can only hope that our country learns from our forefathers that it is important to take a moment to give thanks, and truly reflect on what we have, and to do this not just once a year, but every day.  I hope to see more of an understanding as to why the Government has programs for those who are less fortunate.  What kind of a people are we if we don’t take care of the weak, infirmed, elderly, and innocent?

I don’t just give Thanks, I radiate a humble gratitude that I am here, I am healthy, and I have known the greatest love.  That is what I am grateful for today.

I sign off with a quote from Kurt Vonnegut’s uncle Alex Vonnegut who said it best when he said, “I urge you to please notice when you are happy, and exclaim or murmur or think at some point, ‘If this isn’t nice, I don’t know what is’.”

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Happy Birthday Baby!

10/22/2012

11 Comments

 
At 1:08 in the Morning of October 22, 2011 you were born.  Zoë you have changed me forever, opening my heart wider than I ever imagined, giving me a new perspective on life, love, faith, family, friendship.  You would have been one today, and we would have filled you with sweet cake, and kissed you all over.  I try not to imagine the what ifs, the could have beens…but instead I look at pictures of your sweet face and I just send you all of my love.

Many people have commented on how Zoë had a magic to her that was unlike any infant they have ever met. That she seemed wise beyond her days, and months.  That she was an old spirit.  Now those who know me, or read my blog may have picked up that although I am very spiritual in some sense I am also deeply rooted in what I can touch, see, and know.  So this next bit of information is not necessarily something that I believe ho-heartedly, but something that I am fascinated by…and in some way maybe it does explain Zoë.

When I went to college I lived in room 108 with 3 of the most amazing women who have ever come into my life.  Sarah, Kim, and Elin I think of you all of the time.  The moment someone brings up college I think of my 108 Cutie roommates, as we were nicknamed by others in the hall.  So when Zoë was born not only on Sarah’s birthday, but at 108 in the morning I thought, “Zoë is a 108 Cutie the next generation!”  I was thrilled. 

But that is not where the strangeness lies.  The number 108 has popped up in my life many times in odd ways, so I decided to look it up last month.  Low and behold it is one of the most sacred numbers in numerology, and eastern, religion, as well as being quite the trick number for math, and scientists.

As far as the math goes 108 is an abundant number, a semiperfect number, a tetranacci number, a hyperfactorial of 3, and in Euclidean space it is the measure of the interior angles of a regular pentagon.  There are 108 free polyominoes of order 7, and in base 10 it is a harshad number and  a self number, as well as the degree used in creating the golden ratio.  Now I will admit that I am not up on all of this math stuff…but…the terms “self”, “semiperfect, and golden” do make me smile when I think of them in relation to Zoë.

As for Science: the distance of the Sun from the Earth divided by the diameter of the Sun, and the distance of the Moon from the Earth divided by the diameter of the Moon is approximately equal to 108. 

Hinduism, and Buddhism both have strong ties to 108.  Hindu deities have 108 names, and the mala, or rosary has 108 beads used in ceremonies for repetitions of a mantra.

Buddhists in Tebet have similar rosaries with 108 beads.  The Buddha is asked 108 questions in the Lankavatara Sutra, and another section of the same book Buddah lists 108 statements of negation.  Most Buddhist temples have 108 steps.  In Japan the Buddhist temples ring a bell 108 times at the end of a school year to finish the old and ring in the new year, each ring represents 108 temptations a person must overcome to reach nirvana.

There are 27 constellations which fall under 4 signs (Earth, Wind, Fire, Water) 27X4=108.  That coupled with the fact that there are 12 Zodiac signs and 9 planets…or 108 combinations.  Just strikes me as an odd coincidence.

If we want to go very far back into some Western Religious beliefs, Stonehenge is approximately 108 feet in diameter.

I could probably write a whole book on this number…or it seems someone could, because this is just a wee bit of what I found online. 

I know that people were shocked when I wrote that Zoë passed away at 12:26 PM on April 1, 2012, because she was diagnosed with cancer on 12/26/11.  Perhaps I should look up 12, and 26, or 1226…but to me her being born at 1:08 AM is fascinating. 

Well baby girl, it is nearing 8:00, and this time last year your Memere was visiting you for the very first time, and I was in a post-delivery high that lasted for days, even though I was in labor with you for 3 days.  I could not sleep, I could not stop smiling.  I had my little girl, and that was all that mattered.

May this day be a special one for you; it will always be very special for me.

11 Comments

September 10th, 2012 at 11:44PM Eastern Standard Time

9/4/2012

13 Comments

 
This is the tipping point.  The exact date and time that Zoë will have been gone for exactly as long as she lived.  I know that I have been rather quiet lately.  Not writing as much, and not posting all that much.  Mostly I think because I have been struggling with this impending date.

Nearly all parents who lose a child will reach this tipping point.  The point at which their child is gone longer than they lived.  Some parents have 18, 30, 50 years before this can happen, and for some parents they never see this date.  But for parents who have lost an infant this date comes barreling down at us with in days, weeks, or months of a child passing.

I cannot imagine what it is like to lose a child one or two days after birth, or even at birth.  My grandmother had a still born child.  She was named Grace.  My grandmother never "got over" this loss (how can you?)  She spoke of her daughter to me when I was a child, and she loved Grace.  My grandmother never even experienced this tipping point because it was simultaneous with Grace's birth.  I cannot begin to imaging the pain of losing a child before its first breath.

There is a saying, "It is better to have loved and lost, than to never have loved at all."  I cannot help but think that for me it was better to have been a mother, even if it were for only 5 months, 10 days, 11 hours, and 18 minutes, than to never have had Zoë in my life.

So this September, on the tenth day, at the eleventh hour, and forty-four minutes past I will have reached Zoë's tipping point.  Every second beyond that time and date she will have been gone longer than she lived.  I don't know yet what to do with myself that day.  Do I try to go to sleep and let time do its thing and march on?  Do I stay awake and hold my breath from 11:44 to 11:45?  Do I cry?  Scream?  I don't know what I'll do.  But I know that no matter what I cannot stop this date and time from approaching, and passing by, and pulling me along with it.

Zoë will forever be 162 days old.  She will never speak.  Shew will never crawl, or roll over.  She will never eat solid food, or walk.  But she will change lives, hearts, and minds.  She will change the world, because she has forever changed me.
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    Laura is Zoë's mommy.  Forever and Always.

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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.