Day of Hope: A Prayer Flag for Jonah

August 19th is the international Day of Hope Prayer Flag Project.  This beautiful day of remembrance was created by Carly Marie, who is the mama of a stillborn baby boy named Christian.  Here are some words about this day from Carly's website: "It is a day of speaking out aloud about the babies and children that are no longer here. It is a day healing and a day of HOPE. August 19th breaks the silence surrounding the death of babies and children."

In honor of this day of HOPE, people all over the world created "Prayer Flags" in honor of babies gone too soon from this Earth.  My mother and I participated by making flags for Jonah, each one lovingly made in our own style.  

I brought the flag I made for Jonah to Beverly Hills Memorial Gardens, where he is buried, and took so many lovely photos - trying to capture his flag and all the meaning behind it on this beautiful day in August.  

Thank you Carly Marie and Project Heal for making this day of HOPE, this day of PEACE, and this day of REMEMBRANCE.   

This is what I posted to Facebook along with a photo of Jonah's prayer flag:

"You were born with wings".... Today, and always, we honor the life of our baby boy, our little butterfly, Jonah, who in his short lifetime gave us enough love to fill our hearts forever. We feel his presence every day and know he is with us in a way we cannot completely understand. Thank you Carly Marie for creating this amazing Day of Hope. Today I honor each and every baby who left to soon. Here is Jonah's very own Prayer Flag!

 

 

 

My mom and dad are leather crafters.  This is the leather prayer flag my mama created.

 

Here are the words my mom posted to Facebook describing her flag: 

Jonah was born on May 12, 2012 at 25 weeks. His sudden arrival left us hopeful that our 2 lb.3 oz baby boy would live and grow, but after 47 hours his life came to an end leaving us with a sadness deeper than the ocean. Now over a year has gone by, and I want to remember our first born grandchild with a special prayer flag made of leather. I have been a leather worker for 40 years and I have wanted to make something special in this medium. Around his birth date, I punched 47 holes; each representing the hours that Jonah was physically with us. The hole in the heart was a natural flaw in this piece of leather so I made a heart around the hole to represent the loss we feel. Butterflies have become his symbol as on the day of his funeral and many other occasions henceforth, we have been visited by butterflies. Each symbol has special meaning to our family and each hour spent making the prayer flag gave me a chance to ponder the fragility of life and the deep connection between a mother and her child no matter the amount of time one has together.

 

I hope Jonah's prayer flag brought the same kind of peace and comfort to your hearts as it did ours.  To learn more about the Day of Hope and to see prayer flags made by families all over the world, please visit August 19th - Day of Hope: The Prayer Flag Project

Mother's Day, First Birthday

What a beautiful coincidence that Jonah's 1st Birthday is also Mother's Day.... 

In honor of Mother's Day and Jonah's birthday, my husband Deva and I had a little get away this weekend to a bed and breakfast in Deep Creek, Maryland.  We relaxed, spent time in nature, and reflected on this past year.  On a comical side note, a bear stole our cooler off of the patio at our B&B and had a lovely salmon dinner.  You're welcome bear.  

  
Celebrating Jonah's birthday and Mother's Day all at once held a flood of emotions.  But most of all my heart was flooded with pure love for my little butterfly.  Despite the intense grief I feel, I must remind myself of the miracle of his birth, of his life, and of the impact he had and continues to have on us all. 

After our trip to Deep Creek we visited Jonah's grave, where we found an amazing surprise - a birthday card and butterfly for baby Jonah from my dear friend Sophia.  
 

Our very creative friend Susan made a darling cupcake with butterflies and footprints that Deva and I shared in honor of Jonah's first birthday. We sat at the cemetery and opened cards, sang, read Jonah's book (On the Night You were Born), and read a poem I wrote.  I had a sense of peace being there and felt his presence as the wind roared and the sun played hide and seek with the clouds.  
 

I'd like to share with you the poem I wrote to read at our baby boy's grave side today in honor of his first birthday.  My feelings are real, and raw.   

Mother’s Day, First Birthday
By Heidi Solomon
May 12, 2013

My darling boy….

If you were here I would nuzzle your noggin – with surely a full head of hair by now

If you were here I’d kiss each little toe, both cheeks, both ears

I’d comfort your cries

I’d love on you all day

But on this Mother’s Day, your first birthday, you’re not here

You blessed my life with your presence

You completed our lives

But we had to say good bye to you

Last year

The day after Mother’s Day

Two days after you made your debut

And all these months I’ve clung to you – I’ve wished you alive a million times

I’ve pretended you were here

I’ve dreamed about how our lives would have been so different

And then all that pretending and wishing caught up to me

And as if our world wasn’t already crashing down upon us,

My life, my core, seemed to shatter in your absence – in the illusion I’d built up around you

My breath left me

My grip on life left me

And despite the rawness of it all, I finally began to heal

I finally let myself grieve, process

I discovered my identity – Once a mom, always your mom, but not a mom right now

I had bound you up so tightly into my heart

That I didn’t know how to let go of my strong hold

But to move forward with my life, with my identity, I had to give you back to the universe

And so I did

I opened my soul, my heart

And poured you out

Released you

Your soul and my soul were once one

And you’ll always be a part of me, but that’s just it my love – a part

I am still whole

I’ve picked up the shattered pieces and slowly molded them back together

A new me

Each day I miss you Jonah

But each day I learn how to be at peace with our reality

Please know my sweet boy that I will always love you

You will always be my first born, my first love

And your presence will always be among us

But you are a part of the universe now

A shooting star, a blooming flower, a tiny butterfly

You are the sunrise and sunset

You are the rain and my tears

I know the universe will bless me with reminders of you, Jonah, each day of my life

You are separate from me, lovey, but you surround me just the same

This Mother’s Day and your birthday I feel close to you and a million miles away

All at the same time

And that is true

And that is ok

Happy Mother’s Day, Happy 1^st Birthday dear Jonah Henry

 

Jonah's Rocking Chair

Today our dear friends Laura and Todd and Laura's parents donated a
beautiful rocking chair to the NICU where Jonah was born. 
Here are the words I shared with the nurses,
Laura, and Deva when we dedicate the rocker. 
 

Rocking Chair in honor of
Jonah Henry Solomon
Our little butterfly
 
March 3, 2013

The NICU – a place full of charged emotions – happiness for new beginnings, for babies being alive and surviving.  A place of fear – so many unknowns for these tiny fighters.  A place of bittersweet joy.  Usually a place to celebrate tiny victories, but sometimes a place of unimaginable sorrow.  In this place we have felt joy, we have celebrated tiny victories.  And we have felt fear and experienced something no parent should ever have to live through.  But through all of these emotions this place still exists.  The NICU offers the most critical care to the tiniest, most fragile patients.  It is an amazing place.  

Parents go through so much in this place…Whether they are holding their babies for the first time or the hundredth, it’s important that they have a special chair they can rock in and bond with their child.  We are so honored that our dear friends Laura and Todd, and Laura’s parents have donated this lovely rocker to the NICU in honor and memory of our son Jonah.  
  

Although our dear baby Jonah was only here for two days, the time we spent holding and rocking him were the most precious moments of our lives.  To know that there will be a rocking chair with our baby’s name on it here in the NICU is so special.  I know that when parents hold their tiny babies in Jonah’s chair they will be completely surrounded with the feeling of unconditional love and a connection to their child that is unlike anything else.

This rocking chair is a special throne for parents to embrace their tiny miracles.  Thank you so much to the Fulks’ and Goblinger’s for honoring our baby Jonah in such a generous way.  You are making a difference in the lives of other NICU families and I am honored for Jonah to be a part of their world.  

Did I meet your expectation?

Shadow grief.  It's the grief that ambushes you - jumps out of the bushes and tackles you down.  Blindsides you.  And it always makes its surprise attack when you're feeling pretty good.  When you think you might just have a grip on the new normal.  Today I attended a conference about Autism and sensory modification with my friend Tessa (who is really like my second mom).  It was excellent.  I was totally engrossed in it - my brain focused in on something other than my reality.  The instructor played a video from Story Corps - an interview between a mom and her twelve year old son, who has Asperger's.  The touching interaction between the two was heartwarming and I admired this mom's honesty with her son.  I was in a happy place, and then the bandit shadow grief stole my moment.  The son asked his mom, "Did I turn out to be the son you wanted when I was born? Like, did I meet your expectations?"  And out of nowhere tears began to flood me.  The thought of Jonah asking me this question gave me an intense fear that he somehow feels like he disappointed me - that he feels like he wasn't the baby I had wanted or expected because he couldn't stay. 

This shadow grief moment struck me with such intensity - I silently cried and cried in the front row of my conference.  I wonder what the instructor thought of my sudden sorrow.  During a break I confessed my moment to Tessa.  She put her arms around me and told me she loved me.  I needed that.

When you're expecting a baby (and even before) you do have a picture for what that baby's life will be like - an expectation.  And do our children always meet those lofty fairytale like pictures we paint for them?  Not always, but they always turn out to be the children we wanted, because they are ours, because our hearts are moldable and our children always fit in them perfectly.  I do not want Jonah to feel that he wasn't what we expected - that he didn't meet our expectations.  He was everything I wanted - my perfect baby boy.  He met my every expectation, he was everything I ever wanted.  And the fact that he made me a mom, made us parents - that fills my heart with intense love and eternal joy for our Jonah.  Of course I wish he could have stayed, but I was never disappointed with his existence.  I hope he knows that.  

To my son, Jonah: I pray that you never doubted whether you were "enough" for us.  You are our everything - the love of both of your parents molded and blended into one, tiny, perfect human being.  We are forever grateful for your physical time with us and your ongoing presence in our lives.  Your life has exceeded our expectations and we are so proud to call you our first born, or son, our love.  

   

A Plan.....A Path

In December of 2011, on the twelfth month of fertility treatments, I finally found myself unbelievably pregnant.  After what seemed like a life time of doctor appointments, ultrasounds, injections, and disappointment, we were overcome with relief and joy.  One of the first things I did was dispose of the myriad of fertility drug supplies - vials, needles, cotton swabs, alcohol swatches, portable coolers, ice packs..... I was more than happy to empty it from my life and move on from that tough chapter.  Little did I know, 13 months later the fertility doctor would ask if I still had all of that stuff.  How could I have possibly predicted that I would need it again, and so soon?  And here I am welcoming it back into our lives....

Last Wednesday I saw Dr. Rowan, our fertility doctor.  I was SO nervous...my heart was beating a billion beats per minute.  I couldn't wait to see him, but I dreaded the possibility of bad news.  We have had so much bad news in these past few months.  As soon as he came into the room my nerves seemed to ease... I thought, "I know this guy.  He's on my side.  He got me there once....this is his specialty, his science."  And as the butterflies in my stomach flew away, I welcomed in the news that my ovaries looked good and that I had the green light to start fertility treatments once again.  I left his office with a lightness in knowing that I could be pregnant again soon.  He advised me to come back on day 3 of my next cycle, which he anticipated would be in about 2 weeks.  Good.  Two weeks to absorb all of this.   

The thing with PCOS (polycystic ovary syndrome) is that you never quite know when "aunt flo" is going to come around.  Surprisingly, she came by sooner than I expected, and on Saturday I found myself facing the fact that day 3 - starting day - was right in front of us.  Were we really ready to start down this path again?  ....I wasn't sure.  I expected to have a few more days to grasp the idea of doing fertility treatments again.  During yoga that morning I thought and thought about what we should do, and while I was supposed to be mediating (oops) I came up with a plan.  Fertility treatments are all consuming, all draining.  They toy with your emotions and are hard on your body.  You definitely want to be at your optimal self - as healthy as can be going into it.  While I feel like my body is mostly back to its pre-pregant self, it could stand a little tweaking.  So, I decided that instead of starting the treatments this week, I would give myself one more month to be my healthiest self.  For one month (and until I am pregnant) I am getting myself to the gym more often, eating less carbs and more lean proteins and much more fruits and veggies, and focusing on my well being through yoga, acupuncture, massage, and art.  After the yoga session I grabbed my mat and my new goal and headed to the grocery store where I literally filled my cart with veg and fruit and organic meats, and quinoa (I hear good things about quinoa).  I rushed home and began to organize my healthy menagerie of eats.  Now snack sized zip locks of prepared cauliflower, grapes, and avocado are overflowing my fridge.  I feel healthier just looking at it!

Studies show that losing just a handful of pounds can boost your fertility.  I'm hoping to shed a few, but honestly, I think just eating healthier and exercising more will help regardless of weight loss.   I feel energized by my plan, and I think I'll feel more comfortable re-entering the land of hormone injections knowing that I'm at a healthier state.  Heading down this path again is not easy...It's a daunting task, but it's our path and it's the one we have to embrace.  Here's to a healthy month!!    

   

Congratulations

Writing is an interesting process....Sometimes you feel like writing and there's not a subject in the world that inspires you to put pen to paper (or fingers to keys).  Yesterday I was thinking, "I should write a new blog post."  But what should I write about?  Hmm... The holidays?  Work?  The tragedy at Sandy Hook?  My upcoming fertility specialist appointment?  Nothing struck me as "needing" to be written about.  A subject has to want to be written about - It has to call you, beckon you to explore it.  If it doesn't inspire you, forget it.  Since I couldn't decide on what to write about, I decided to just wait for a subject to come knocking at my door.  It would happen.  It always does....And it's rarely something I expected to write about.

My maternal grandfather is a proud Rotarian.  He always dreamed of one of his grandchildren studying abroad through the Rotary International Youth Exchange Program.  Lucky for him, two of his grandchildren partook in this amazing study abroad opportunity - my brother and myself.  I spent the most influential year of my life on the west coast of Norway during my junior year of high school, and Ian spent his sophomore year in Ireland and England.  While Ian was preparing for his year in the United Kingdom we met a lovely young lady named Sarah who was preparing to go to Italy.  Sarah was sweet and bubbly, with an infectious personality.  During her year in Italy she fell in love with a native Italian and eventually married him.  It was such a fairytale story.

I hadn't seen Sarah in many years, but I had heard that her first child, a baby girl, was stillborn.  I remember feeling very sad for her, but totally naive to her grief.  Little did I know that I would walk in her shoes one day.

After years and years and years I saw Sarah today.  She and her husband own a lovely little shop in downtown Bedford, PA, where they sell authentic Italian pastas and goods and host elegant Italian meals.  She looked beautiful - bright and vivacious - just as I remembered her.  She looked like life filled her and fulfilled her.  I told her about Jonah and she shared with me about her own loss, now six years ago.  She told me that she felt like she was "chosen" to be Sophia's mom and that she felt incredibly blessed to have had the time she had with her.  She said she felt like her experience shaped her into who she is and that she wouldn't have traded it.  Even with tears in her eyes, she spoke with such joy and pride for her first child....grateful for her existence and continued presence. As she spoke I thought about all the sadness that surrounds death.  So much sadness looms around Jonah's passing that it's hard to celebrate the joy of his birth, of his life.  While I feel the same pride in my baby as Sarah does, it's hard to look past the fact that he is not here and that my heart is so empty...  But just as I was absorbing Sarah's uplifting spirit regarding her precious daughter she said the most incredible thing to me.  She said, "Congratulations," and gave me a big hug. Congratulations on having a baby, on becoming a mom.  Sarah's words of congratulations completely caught me off guard - like an unfamiliar phrase in a learned language.  It took me a second to register its meaning. But my puzzlement quickly turned to gratefulness...That five syllable word swelled my heart and caused tears to run down my face.  The emotional response I had was overwhelming.    Congratulations...Such a foreign word to us...We have been surrounded by so many I'm sorry's and other sad condolences.  Since Jonah died I have not had a single person congratulate me on the birth of my son.  How quickly people forget to celebrate the joy of a child entering this world, even if he only stayed a short while.    Sarah's simple word warmed my heart and filled me with such pride and joy for my sweet Jonah.  We should celebrate his entrance into this world, his sweet existence.  This simple word was so unexpected, yet so welcomed. 

I can relate to Sarah's joy of having her daughter in her life - even if she couldn't stay.  I ache for Jonah every day, but I do not regret his short life.  The two days with Jonah were our most precious two days, and the 25 weeks leading up to that were shear joy for us.  Jonah has shaped us into who we are - proud parents of such a sweet, eternal soul.  Jonah led me down the path to donate his milk - to literally save babies' lives.  He has touched so many and our story continues to inspire people around the world.  His impact on the lives of others is greater than we can even imagine, and his impact on us will be forever etched in our hearts.  I am so grateful for Jonah Henry.  So proud to be his mom, and so thankful for the acknowledgement of his existence, of his presence in this world.

Sarah, you touched my heart today in a way no one has.  Your words of congratulations filled my heart with such pride for bringing my baby boy into this world.  From one grieving mom to another - I thank you from the bottom of my heart.  You entered my life today right when I needed you.

And just like that another blog post is created....Sometimes you just have to let the inspiration come to you when the moment is right.  I knew that moment would come along and help me fill my screen with words.  I just didn't know that one little word congratulations would spark such an emotional response.  

Jonah Henry....Waving at me the first time I saw him

          

It's the most wondeful time of the year?

I have been on sort of an artificial "high"....Buzzing on the excitement of Jonah's Milk, of making the front page of the Pittsburgh Post Gazette,  of being thanked by so many people for our contribution to babies - of making a difference in this world.  This high had me fooled into thinking that life was getting "lighter" - that the days weren't going to weigh me down with bone crushing grief anymore....I was finally feeling almost like myself after such a long time of feeling so isolated and overwhelmed by the loss of Jonah.  But grief has a funny way of blending into my life in such a way that I nearly forget it's there.  And then when I least expect it, it smacks me in the face - like suddenly walking into a sliding glass door that I didn't even know was closed.

Shady Mr. Grief flooded my heart this Thanksgiving.  My first cousins had a beautiful, healthy, perfect baby girl this summer - not long after Jonah was born.  My first cousin's wife, Crissy, and I were pregnant at the same time - we commiserated on the phone about the woes of early pregnancy.  Our two babies - a boy and a girl were going to grow up together.  Before we knew what we were having, we coincidentally picked the same name for our baby.  (although neither of us ended up using it)  This was so exciting!  Sadly, their baby girl will never get to meet our baby boy.  I knew they would be at our family Thanksgiving celebration, and despite the loss of Jonah, I was greatly looking forward to meeting beautiful baby Briella.  I was sure I'd be able to put my grief on a shelf and be happy for my dear cousins. (And I am so, so happy for them!)  But let me tell you - holding this gorgeous, healthy, amazing six month old baby made my heart ache in a way that it hadn't in a while.  She cooed at me and smiled and I wished with my heart of hearts that it was six month old Jonah cooing and smiling at me.  I'm sure he would have had the cutest smile.  I cuddled her and sang to her the song I sang to Jonah when I held him, and then I handed her off to another relative and disappeared into my childhood bedroom to cry.  My heart felt like it was breaking into tiny bits.  This is an all too familiar feeling, but it had at least left me for a short time.  When you're happy you forget how much grief hurts.

What healed my heart a bit was to see Briella's mama look through the scrapbook I made of Jonah.  She quietly looked at every page and I watched her from a distance - giving her the space she needed to absorb our tragedy in the light of the joy of her own newborn.  After Jonah's birth and passing I poured myself into scrapbooking every aspect and detail surrounding my pregnancy, his birth, his life, and his death.  It holds emotions of intense love and sadness, and I consider it one of my most valuable possessions.  I love sharing it with others - to share our journey, to share our Jonah.  Yes, it is sad, but it is also beautiful - it is our baby.  Every parent relishes sharing photos of their greatest accomplishments - their children.  All of my friends with kids are constantly posting pics of their kiddos on Facebook - showcasing life changing milestones and even mundane everyday moments.  I am no different - I want to share Jonah with the world, even if he was only here for a short time.  The fact that my cousin took the time to look at each page of Jonah's album made me feel like a proud mama.  But not everyone wants to see pictures of my baby.  For some people it is just "too sad."  At Thanksgiving my own grandma declined my offer to look at Jonah's album, saying "it's just too hard."  For those of you with kids (or even without) - can you imagine offering a loved one to see a picture of your child and them not wanting to see him/her?  Think about how hurt you would feel.  When my own grandma wouldn't even look at Jonah's pictures it just about broke my heart.  This was her great grandchild - a precious, beautiful, perfect baby boy.  Yes he was tiny; yes he was sick.  But he was my baby. I gave birth to him.  And he was alive.  I heard his sweet cry.  I watched him move his arms and legs about.  I loved him with all the love my heart could give and even more.  I cannot help it he lost the battle for his life.  That doesn't make me love him any less.  That doesn't make him not exist.  And the fact that my grandma wouldn't even look at him - Words cannot describe my pain.  Even my dear cousin, who had just had her own baby could look at Jonah with bittersweet joy.  Thank you Crissy for letting Jonah into your heart - It really means so much to me.  As for my grandma, maybe she'll be ready to look at him some day.

As you can see, as I welcomed in the Thanksgiving celebration, I also welcomed grief back in. I always figured the holidays might be tough, but I didn't imagine it would be this hard.  The days following Thanksgiving left my heart aching.  I forgot how bad grief can feel.  To top it off, my grandfather's first words to me at Thanksgiving were, "So, are you pregnant yet?"  Seriously.  Not, "How are you doing?  How are you feeling?"  I guess he hasn't read my blog.  :)  Regarding this question, we met with the high risk OB several weeks back.  He agreed with my fertility specialist that waiting a year wasn't a bad idea, but that we could do a few things in the mean time to calculate our fertility.  So, for the past few weeks I've been taking ovulation tests.  I said to the doc - of course I'm ovulating - I've had a period every month since I stopped pumping.  He explained that with my history of PCOS, I could be having "an-ovulatory" cycles, where I don't ovulate at all.  How is this even possible??  Apparently it is. :( Also, he wanted to see results of genetic testing that Deva and I both had done on ourselves (even though the genetic testing on Jonah was negative).  Good news - both of our tests came back free and clear of genetic defects.  What a relief.  So, that leaves us testing ovulation for a few more weeks and then we'll go back to the high risk OB to make further plans.  If I'm ovulating normally we will be given the green light for trying it the "old fashion way." If I'm not, then we'll be headed back to Dr. Rowan, the fertility specialist to start down that path again.  Let's all hope and pray that the ol' ovaries are doing what they should be and that our next baby will come to be without the intervention of fertility drugs and treatments!

As I wait for the magic green light to start the process of getting pregnant again, I continue to deal with the emotional roller coaster of the holiday season.  On Saturday I went to a candle light Christmas service at the cemetery where Jonah is buried and just about had a pubic breakdown when I put an ornament on their tree with Jonah's name on it.  Fortunately, Hanukkah is half way through and I'm not feeling quite as bad as I was then or on Thanksgiving.  I guess it's to be expected that the holidays would be a tough time....I just thought my recent "high" would carry me through the "most wonderful time of the year."

***Post Script: 12/16/12 
Last night my mom read this post and provided me with some insight as to why my grandma might have not wanted to see pictures of Jonah.  When she was young her only brother drowned in the ocean while trying to save someone.  It was a horrific experience and it changed her life and her family's lives forever. Maybe she sheltered herself from sharing our grief because the death of baby Jonah brought back memories of losing her brother.  I'm sure after absorbing such sadness in her life, she might not have been able to absorb another family tragedy.  I cannot imagine the pain of losing a brother.  But I do know the pain of losing a son, and it's a pain like no other.  I apologize if I seemed insensitive towards my own grandma.  The grief of losing my child can sometimes make me lose sight of the suffering others may be experiencing.  My grief is no greater or lesser than any other person's grief, and I should not judge someone's reason for sheltering themselves from the sadness associated with our baby's death.    

My mom and I with baby Briella - Thanksgiving 2012

Six and Peace of Mind

While I was pregnant I felt like time would go on forever.  After Jonah was born I felt like we would spend an eternity in the NICU.  After Jonah left us I felt like the days would craw along, prolonging every grief filled nano second.  But somehow nano seconds turned into minutes, minutes into hours, and hours into months.  And now here we are - six months later.  Today our little butterfly Jonah would have been six whole months old.  Half a year.  It's incredibly hard to believe that so many days have passed.  While every day seems like a day further away from him, it also seems like a day closer to our goal - to start down the path to have another baby.

This path has definitely had its ups and downs - its shiny new pavement, and car swallowing potholes.  The past two weeks brought some light into our lives that I wasn't sure existed.  Our story Jonah's Milk was posted on the Wold Milk Sharing Week Facebook page, together with a picture of all of the milk I pumped - proudly stacked on my kitchen counter.  While I have always had positive feedback from sharing our story, it's mostly just been read by our family and friends - a small audience.  Well, when Wold Milk Sharing Week shared our story it went absolutely VIRAL! (Wow- I can't believe I can use the word "viral" for something in my life!!) So far, our story has had over 3,800 "likes," 526 comments, and it has been shared 763 times - not to mention that it was picked up by several blogs, websites, oh and the Pittsburgh Post Gazette came to interview me.  It has been shared all over the world - from West Virginia to Japan, to Tasmania, and back.  There has been so much attention - I have been completely overwhelmed.  Complete strangers are telling me that I am their hero, and that I should win a mom of the year award (someone even mentioned the Nobel Prize LOL!!).... My favorite comment was from a lady who said, "I don't even know you, but I am so proud of you."  I am awestruck by the overwhelming feedback - I can't even totally comprehend or absorb how many people Jonah's short life has touched.  For those of you who saw the picture and commented or e-mailed, thank you so, so much - I was touched by each and every comment.  If you haven't seen this post, here is the link: World Milk Sharing Week's post of Jonah's Milk.

All of the positive energy associated with Jonah's Milk has really brightened our world and made each day just a little easier.  To know that our son had such a huge impact on this world does bring me some comfort.  And I think my friends and family can tell.  A few days ago I had a discussion with a friend who had a life threatening experience with a ruptured ectopic pregnancy.  She has been on her own journey to have a baby and said to me something along the lines of this, "It's so great that you have had something positive to focus on after Jonah's death.  You've taken something so sad and focused on doing something to help other babies.  There's no way for me to have something positive to focus on after my loss.  I wish I had something good I could make out of this too, but there isn't anything positive."  Her confession really got me thinking - I do feel so blessed to have had the focus of Jonah's Milk during this dark and trying time.  Had I not pumped and donated breast milk, I too would have had only negativity and sadness to focus on.  I feel blessed to have had the opportunity use the tragedy of my son's death to put positive energy into making the lives of other babies better.  I feel so sad for women and their families who have had a loss who cannot find something positive to focus on.  But if I search deep down, there is a way to make something positive out of her experience.  I urged her to share her story and to be comfort to others who have been through a similar experience.  There are so many women who have experienced some sort of loss - whether it's an ectopic pregnancy, a miscarriage, a stillbirth, an abortion, infant death, or the death of a child.  These losses come in many forms, and up until recently there has been such silence associated with them.  It is incredibly therapeutic and uplifting to share your story - to break the silence and help other women know that they are not alone.  A wonderful place to do so is Faces of loss, Faces of hope, where you can share your story - whether it happened 40 years ago or yesterday.  Our Jonah's Milk story is posted there.  If you have had a loss - please share your story.  Your story will let others know that they are not alone on this path.  We can all draw peace from knowing that we are not alone.

And speaking of peace, on Saturday I started a new yoga class - Yoga for Fertility.  Our six month waiting period is up and we've been "cleared" to start down the path of getting pregnant.  Before we head down this road again, I want to be in my best form - healthy, both physically, mentally, and emotionally.  The yoga instructor emphasized "peace of mind;" that with peace of mind, anything is possible.  I am really working towards peace of mind - through various outlets, including my loving husband, my supportive family, my practical grief counselor, my amazing friends, through Jonah's Milk, and now through this new yoga class (with an amazing instructor - Nicole Gauthier Schatz).  Each day my heart aches for the loss of our precious baby Jonah, but each day I try to get closer to "peace of mind."  And I thank each and every one of you for your help along the way - Even those of you whom I've never met.

Tomorrow I have an appointment with the high risk OBGYN for "pre-conception counseling" - to make a plan for how to get a baby to this world safe and sound.  Please send us "peace of mind" vibes as we head down this path - for who knows what this path will bring.      

Genetics and Petitions

I think we'd all like to think of ourselves as pure, clean, flawless beings - capable of passing on only our best qualities and attributes to our beautiful, perfectly cloned cherub like babies.  When Jonah entered the world he was so perfectly formed - from his sculpted earlobes to his dainty lips to his wispy eyelashes and brows....only his size was flawed and even that seemed ok.  He was proportionally perfect - miniature, but magnificent.

After Jonah's death, we were presented with several theories on what caused his early birth and sudden decline.  The most sound theory centered on a placental infection in utero, which caused sudden preterm labor and exposure to a deadly infection.  While no parent wants to be the "cause" of their child's death, I embraced the idea of Jonah contracting an infection.  As the high risk OB GYN said, "This is a case of bad things happening to good people."  Bacteria lives in everyone's body - it's not supposed to be able to get to the placenta.  The chance of a placental infection during pregnancy is extremely rare and the chance of this happening again to us would be like being struck by lightening twice.  While it broke my heart that the infection came from my body, it also gave me comfort to know that this would most likely never ever happen again.  It was a freak occurrence.  Jonah was perfect in every way.  His tiny body just couldn't fight this freak infection.  As a precaution, we agreed to do genetic testing on Jonah's blood and skin cells to rule out any genetic disease, although what really was the point of that?  We had our answer.

Months went by and the infection theory settled into the fabric of our lives.  Our conversations went like this: "We had a baby in May.  He lived for two days and passed away.  We found out I had an infection in my placenta that he was exposed to and that's what caused the preterm labor and his death.  Yes, that's a very freak thing to have happen.  Yes, the doctor says we can try again in about six months because the chances of this happening again are slim to none."  As hard as it for that to be our spiel, it was ok because there was hope in it.

That "hope" came crashing down in mid August when I got a call from Dr. TC Narumanchi, the pediatric geneticist from WVU Hospitals.  Why was he calling me?  We had met with him about a month after Jonah died and he had ruled out any genetic component to Jonah's death.  Oh ya...he said the results from the fatty acid skin test would take a few months because it had to be sent to Mayo Clinic so Jonah's skin cells could be grown in a petri dish for further genetic testing.  I was sure he was just calling to confirm that the Mayo Clinic found nothing genetic and we could move forward with our lives.  Little did I know, the comfort level that my heart had reached after months of aching and breaking was about to end.  Dr. TC called to report that Mayo Clinic's tests found out that Jonah had something called SCAD, a very rare genetic disease that in very rare cases is lethal.  For about 20 minutes TC went on and on about SCAD and what it was and that because it was a genetic disease we would have a 1 in 4 chance of this happening again and that we should think about doing IVF and doing genetic testing on the embryo or using a sperm donor or an egg donor.....  I tried to stay calm on the phone but I was quickly having a nervous breakdown.  At the end of his confusing monologue filled with tons of technical genetic jargon, he said the following, "BUT I don't actually know for sure if Jonah had SCAD because his numbers were diminished, but not absent."  So, there was a chance that Jonah really didn't have SCAD??  Dr. TC said he would have to talk to the SCAD "expert" at Mayo Clinic to confirm the diagnosis, who ever so tragically was on vacation.  Dr. TC would call us as soon as he knew for sure.

So, for the next three weeks we were in a state of utter panic.  Suddenly, our comfort in knowing Jonah's birth and death was just a freak thing turned into a genetic monster with a 25% chance of recurring.  We were reliving our grief all over again. 

The week Dr. TC called I was listening to the book Eat Pray Love by Elizabeth Gilbert for the third time on audiobook.  (Side note: if you haven't read this book, drop everything and find a copy.  It will change your life.)  There is a scene in the book where the main character, Liz, is going through a horrific divorce that will not come to an end.  While driving to a book signing with her friend Iva, she cries on her friend's shoulder that her husband will not sign the divorce papers and after months and months of fighting through lawyers she just wishes it would all come to an end.  She says,  " I wish I could get some divine intervention here. I wish I could write a petition to God asking for this thing to end."  

Her friend Iva says, “Where did you get the idea you aren’t allowed to petition the universe with prayer? You are part of this universe, Liz. You’re a constituent – you have every entitlement to participate in the actions of the universe, and to let your feelings be known. So put your opinion out there. Make your case. Believe me – it will at least be taken into consideration.”  So Liz pulls out a pencil and writes:

Dear God.  Please intervene and help end this divorce. My husband and I have failed at our marriage and now we are failing at our divorce. This poisonous process is bringing suffering to us and to everyone who cares about us.

I recognize that you are busy with wars and tragedies and much larger conflicts than the ongoing dispute of one dysfunctional couple. But it is my understanding that the health of the planet is affected by the health of every individual on it. As long as even two souls are locked in conflict, the whole of the world is contaminated by it. Similarly, if even one or two souls can be free from discord, this will increase the general health of the whole world, the way a few healthy cells in a body can increase the general health of the body..."

The petition is followed by Liz and Iva naming all the people - both dead and alive who "just signed" the petition.  The list includes their close family and loved ones in addition to the likes of Bill and Hillary Clinton, Abraham Lincoln, Gandhi, Mother Teresa, Bono, Saint Francis of Assisi, Eleanor Roosevelt, and so on and so on.  Minutes after she wrote her petition and everyone "signed" it, Liz's cell phone rang. It was her lawyer - Her husband had just signed the divorce papers....Finally.  

After listening to this scene while driving home from work in my car, I suddenly had such a strong connection to it.  I knew in that moment we had to write our own petition to God.  We had to petition that Jonah didn't have SCADS - that this was a mix up.  That night when we went to bed, I told my husband, Deva, about the scene in Eat Pray Love.  He agreed.  We needed a petition of our own.  So we made an audible petition to God.  It went something like this:

Dear God, 

We are Heidi and Deva Solomon and our baby Jonah died in May.  We just got news that he died because he may have had rare genetic disease called SCAD.  On this date, we petition that Jonah did not have SCAD.  We petition that he was a perfect little baby boy, free of any genetic defect, who died because he was exposed to an infection in utero.  His tiny body could not fight the infection and that is why he died - not because of SCAD.  We petition that the "expert" in SCAD Disease is going to call Dr. TC and inform him that our precious Jonah did not, in fact, have SCAD and that this was a false report.  God, we need you to honor this petition because if Jonah had SCAD it means that we have a very good chance of having another baby die and we cannot endure a second tragedy.  Please God hear our petition and honor it.  This means so much to us.  Thank you so very, very much.  

Then we proceeded to name everyone who signed it - our family, our friends, our coworkers, our favorite actors, singers, and politicians.  They all signed it. 

Before "writing" our petition, I was a mess.  I was so sad and anxious and upset.  I was crushed.  But writing that petition lifted me - made me feel lighter.  I felt so strongly that our petition, our prayer would be answered. 

Three and a half weeks after our initial diagnosis of SCAD, and about a hundred messages left with the pediatrics genetics department to "please please please call us back, we're dying here," Dr. TC FINALLY called me.  He apologized for the delay and said, "I talked to Dr. Mattern at Mayo Clinic.  He reviewed Jonah's case and it took him thirty seconds to conclude that Jonah did not have SCAD." DID NOT!! DID NOT!!! After three and a half weeks of sheer agony we finally got our answer - the answer we so desperately needed! Our petition to God had worked!! Wow.....  I am in awe. 

I heard that part of Eat Pray Love exactly when I needed to and it led me to write a petition of our own.  And that petition was heard.  The universe is a mysterious thing....I'm not a particularly spiritual person.  I'm skeptical.  You never know if things are out of coincidence or an answer to a prayer.  In any case, I am so grateful to the universe, to God for receiving our desperate plea. 

Thank you Elizabeth Gilbert for the inspiration.    

  

Road Block

It has been over 14 weeks since Jonah was born.  During this time I've cried, smiled, melted down, laughed, wept, hugged, mourned, and healed a little bit.  Today I visited my fertility doctor, Shon Rowan, for the first time since shortly after I got pregnant.  While undergoing fertility treatments I  saw Dr. Rowan 35 times in 12 months.  I have gotten to know him quite well.....pulling my pants down for Dr. Rowan has become as casual as shaking his hand hand hello.  Lol.  He came into his office today and said how he'd been thinking about us a lot over the past few months and wanted to call, but didn't.  He played such a HUGE role in me getting pregnant.  After Jonah died I really wanted him to know what happened.  My midwife told him, but I never heard from the man who was somewhat responsible for Jonah's life.  That made me sad.  I'm glad to hear he was thinking about us though.....despite his lack of contact.  (No hard feelings Dr. Rowan if you're reading this)  

While I do not think I'm 100% ready to be pregnant again, I am ready to make a plan.  So that's why we met with Dr. Rowan today.  In my mind, it's been over three months....I'm feeling much more emotionally stable...I'm done pumping breast milk....I'm longing to be pregnant again.  I was in love with being pregnant.  While much of the time I felt like I had caught a permanent deadly flu bug, I still wouldn't have traded those 25 weeks for the world! I loved being pregnant with Jonah.  I loved that we had finally succeeded to conceive; I loved we were going to be parents; I loved watching my belly grow rounder and fuller each week; I loved feeling his little poking kicks; I loved the attention being pregnant brought me; I loved talking about being pregnant; I loved my thick hair and strong nails; I loved planning the baby shower and registering for the many many many baby items I was sure we would most certainly need. And the greatest thing about being pregnant - adorable, stretchy, comfy maternity clothes! At 25 weeks pregnant, I was finally starting to feel so good and I felt that glow that everyone said I had.  I was by no means ready to be done being pregnant, let alone mentally or physically prepared for what was to come.

So in my head I'm thinking 3, 4, 5 months seems like a reasonable time to wait before heading down the fertility path again.  I will never be "over" what happened, but I can continue to grieve the loss of Jonah while turning the page to the next chapter of my life.  After Jonah died we met with the head high risk OB/GYN, Dr. Holls (who delivered Jonah) to discuss the autopsy and talk about future pregnancies.  He said wait at least three months with three periods before trying to get pregnant.  This seemed reasonable in my mind.  Of course, with my Polycystic Ovary Syndrome, having three periods can be a feat in and of itself (that's another story).  Well today when we met with Dr. Rowan, (who in addition to being a fertility doctor is a high risk OB), he said that women who carry a baby over 20 weeks and deliver prematurely, who conceive again within less than 6 months time have a much much greater chance of miscarriage, preterm labor, infant death, stillbirth, and/or maternal death.  He recommended we wait one year, and at the very minimum six months before trying.  Statistics of the horror stories mentioned above aside, does he realize how much I want to have a baby?  When Jonah died my world SHATTERED and I've been trying to pick up the pieces ever since.  Part of picking up the pieces involves having another baby....moving forward on the path to be a mom....on Jonah's path.  Waiting a whole year to start the nightmare of fertility treatments again seems like an eternity....especially considering that we first started to try to get pregnant over two years ago.  If we wait till May 2013, it will have been nearly 3 years.  Oy.  And I'll be 31.  Not that that's old, but this biological clock is screaming TICK TOCK in my ears.  If it takes this many years to have ONE baby, how old will I be when our family is complete?  Ok, I shouldn't complain about my age....but when Jonah died it was like the universe was saying, "We're going to finally let you get pregnant and get super super excited about this bundle of joy, and then we're going to rip him from you and take him where you'll never get to touch him or see him again.  Oh and now that your baby is gone forever, we're going to make you wait a WHOLE year to even consider getting pregnant again."  Just seems like a giant slap in the face....or a kick in the heart.  Oh and to make it even harder, this Friday is his due date...August 24th....a date we so looked forward to.  Now it's just a giant reminder of the fact the Jonah is not here.  

I know a year goes by so quickly, and Dr. Rowan said that if we wait at least until November, which will be 6 months, we should be fine to start trying again (especially considering how many months it took us to get pregnant before).  This path just seems SO long.  The first three months after Jonah's birth and death I threw myself into pumping and donating breast milk.  That focus helped the weeks to pass by so quickly.  Now that focus is gone and  I need to draw my patience from somewhere....I recently started taking yoga.  Not sure I'm a yoga kind of girl, but I need to be.  Jonah's path is bumpy and I need some tranquility along the way to get me through these next few months.      

Heading Down Jonah's Path

In January 2011, I started my first (of many) fertility treatments.  After being diagnosed with poly cystic ovary syndrome (PCOS), I was hurdled into a blur of fertility drugs, ultrasounds, hormone injections, counting of follicles, doctor appointments....devastation....SILENCE.  While I shared the details of this experience with my closest family and friends, most people did not know I was going through this.  Infertility and trying to get pregnant is supposed to be a SECRET.  Not sure why this is....heck, so many other health problems are shared out in the open - heart disease, cancer....but find out your infertile and you might as well tape your mouth shut and pretend that life is hunky dory.  Meanwhile, you are living through a personal hell - all while watching your best friends, co-workers, neighbors, and complete strangers conceiving eight billion babies.  That totally sucks.  And you can't even complain about it on Facebook because YOU'RE NOT SUPPOSED TO TALK ABOUT IT.

Anyway....after an entire YEAR of fertility treatments in a last ditch effort, we tried one LAST round of fertility treatments in November 2011.  This involved injecting a drug called Follistim every day into my stomach for weeks and weeks, which caused the follicles in the ovaries to mature to the perfect size to be released for ovulation.  Then I stuck myself with a hefty dose of HCG to release the gorgeous egg (or eggs in my case) and headed into the fertility center to have the very sexy insemination.  While I always imagined Deva getting me pregnant, I never pictured a 70 something nurse practitioner shooting the sperm up in there.  Despite the unromanticness of it all, it still was an incredibly special moment for us.  Deva held my hand and like three seconds later it was all said and done.

After an excruciating two weeks wait, I had a BIG FAT POSITIVE on the lovely pregnancy test.  I screamed, "Oh my freaking G-d!!!" and went on to have an amazing pregnancy with my first child.  It was so surreal....sticking myself day after day with crazy hormones actually worked!! I was so relieved to be done with infertility and onto becoming a mommy!

My dreams and hopes of having a healthy baby boy in late summer came to a SCREECHING halt on May 11th when I went into sudden unstoppable preterm labor at 25 weeks.  Our precious baby, Jonah Henry, was born at 6:31 pm on Saturday May 12, 2012.  He was delivered naturally, in the breach position, in his amniotic sac.....2 lbs, 1 ounce and 14 inches long.  Jonah was immediately rushed to the NICU.  There was no putting him on my chest to have that first mother and child embrace.  There were no pictures being taken.  There was joy.  There was a sense of accomplishment.  But there was intense fear.  He was so little.  He was so early.

After many hours, we were finally allowed to visit our tiny son.  I loved him even before he was born, but I loved him more than I've ever loved anyone or anything else the moment I saw him.  My eyes were completely blind to the ventilator, to the tubes, to the monitors, to his size.  He was perfect in my eyes.

While we knew he had a long battle ahead of him, we were assured that he had a 90% chance of surviving.  His entrance into the world was not what we had planned, but we could handle it.  We could be the type of parents who go to the NICU every day to visit our baby and watch him grow.  We were strong and our strength would rub off on Jonah too.

Sadly, and unexpectantly,  Jonah's health took a turn for the worse on the second night of his life.  By morning we were told we'd have to say goodbye to our precious baby, as his little body could not win the fight for his life.  Devastation beyond words filled our entire bodies.  How could we say goodbye to him? We just said hello.  That day we held our son and cuddled him for the first and only time.  It was the best moment and the worst moment of our lives all wrapped into one.  We changed his diaper, and bathed him, and watched helplessly and numbly as the doctors and nurses removed the ventilator.  I cannot describe what this was like....you can't even imagine our pain.

The days that followed involved things no parent ever wants to do....plan a funeral....hold a funeral.....visit his grave site.....cry......melt down.....cry.....  We worked so hard to conceive him.  Infertility felt like hell.  This was the real hell.

It has now been 12 weeks since our Jonah was born.  These weeks have brought us sadness and comfort.  Depression and inspiration.  If you haven't already, please take a moment to read my post called "Jonah's Milk." (http://jonahspath.blogspot.com/2012/08/jonahs-milk.html?zx=49a95759c50bdc5b) Long story short - In the weeks following Jonah's birth and death, I pumped and donated over 1300 ounces of breast milk - Jonah's milk - to the Mother's Milk Bank of Ohio.  More details are in that post. 

Jonah's birth and untimely death started us down a path....a path we never knew we'd be on.  This is the path of learning how to be parents of a baby who died.  This is the path of grieving while trying to go about our lives.  This is Jonah's path - without him we would not be on it.  And at this point, his path has lead us back to a place we visited nearly two years ago......infertility.  It is a path I didn't want to be on again so soon, but I cannot change reality.  And having the taste of motherhood, no matter how short it was, has lit my desire to try again.  It's not an easy path but I'm ready to head down it.