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HAND of the Peninsula: Newsletter September 2016
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Dear Friends,

Each October, bereaved parents join together in remembering their babies during Pregnancy and Infant Loss Awareness Month, 
established by Ronald Reagan in 1988. HAND of the Peninsula will hold its annual Service of Remembrance on October 9, and we encourage you to join us (more details below).
I didn't muster the courage to attend until several years after losing my son, and I'm so glad I eventually did.
Huddart Park in Woodside provides a beautiful setting in which to remember our babies, and it is a meaningful and important event for my family, where we have the space to remember Cayden and celebrate his life, surrounded by other families enduring similar losses.  

Pregnancy and Infant Loss Awareness Month provides opportunities to parents to share their loss stories and to speak about the babies gone too soon in a culture that isn't often receptive to hearing hard stories. HAND of the Peninsula believes strongly that sharing these stories is critically important. Thanks to a generous grant, we recently produced a short film featuring several HAND families with different loss stories. Our goals in producing this film were to help break the silence around Pregnancy and Infant Loss, to help newly bereaved families think through difficult decisions and feel less isolated in their experiences, and to help healthcare providers view stories of loss through parents' eyes and become more adept at supporting bereaved parents. You can view the film on our 
homepage.



Yours,
Paige Abramson Hirsch,
HAND President


HAND's Annual Service of Remembrance

The Board of Directors of HAND of the Peninsula warmly invites parents, families and friends to join us in a service to honor and remember the babies we have lost.  

When:   Sunday, Oct 9, 10:00am-1:00pm
Where:  Miwok Shelter in 
Huddart Park, Woodside

Please complete this form by Sep 15th to include your baby’s name in the program, to be read aloud during the service.
Also, please send us photos, poems, drawings and stories by Sep 15th to be included in our program and service. 

More Details

What I learned from losing my baby

Published: Aug 3, 2016, Real Woman  |  By: Anne Shamiyeh, a middle school teacher studying to become a nurse. She lives in San Francisco with her husband Omar and her daughters Zara and Malia. 

At some point during each day for almost an entire year, I would stop dead in my tracks and relive the morning that Kai made his way to heaven. All my senses were imprinted with the memories—first the smell when I walked into the hospital that day, then the way his chubby body looked, his belly distended, and the turn of his head when he heard my voice. With the incessant beeping in the background, I remember rushing to wash my hands and touch his face so he knew I was there, and then doctors and nurses and respiratory therapists at his bedside, faces grim with worry.

The beeping got faster, the voices became more panicked, and someone handed me a phone to call my husband Omar. They said, “It has to come from you. It has to. Tell him to come now.” I remember gravel in his voice on the line, saying, “He’s gone, isn’t he? He’s already gone.” I passed the phone to someone next to me. And then the beeping got more intense, voices yelling, “Get him in Mom’s lap! Do it now!” Bodies were moving quickly, but I was left hovering, suspended in slow motion. I held my sweet baby boy in my arms as he took his final breaths. It was a moment that I will be able to smell, taste, and feel every day for as long as I live.

That was June 5, 2013, and after shuttling back and forth from our home in San Francisco to care for his older sister, Zara, and his twin sister, Malia, to the NICU for 174 days, we came home with empty arms. Our son, Kai Alexander Shamiyeh, passed away after an almost 6-month fight for his life, his tiny body unable to overcome the hole in his heart he was born with or the chronic lung disease and pulmonary hypertension he had developed from being on a ventilator.

Parents aren’t supposed to outlive their children. Babies aren’t supposed to die. Yet we were left with this frightening new reality. We had to wake up each day and choose to live, choose to walk one foot in front of the other, and choose to celebrate our angel, despite not being able to hold him in our arms. Malia was just about to celebrate her 6-month birthday and Zara was not yet 3 years old. Our girls needed their mom and dad, and I couldn’t imagine how I was going to be strong enough to do anything but crawl into my bed and cry.

The first year was a complete fog. I took an extended leave of absence from my job as a middle school teacher because 2 months didn’t seem like enough time to heal. The students and their parents knew I was having twins, and I feared facing them, having to explain over and over that one of my babies had died. I didn’t know if I could even find the words to tell 13-year-olds what I couldn’t comprehend myself.

When I think of myself from that time, so raw and wounded, I wish I could tell her that things would be ok, that at some point the vivid and crushing memory of the day we lost Kai would be soothed by the joyous and peaceful moments of Kai’s life. As I reflect on that year, I think about the things that helped me the most. Continue reading...

New! The HAND of the North Bay chapter


The HAND of the North Bay chapter launched July 20th. Groups meet the 3rd Wednesday of each month in San Rafael at the Marin Community Clinic. We are proud to bring bereavement support back to the North Bay as HAND's original chapter began in Marin in 1979. 

A morning of remembrance: A hike and lunch event held on Father's Day, sponsored by HAND


By: Kai Martin, father of Thora who died July 22, 2014 and living daughter Nova (9 months)

After the loss of my daughter Thora who was stillborn at 41 weeks on July 22, 2014, I was trying to work through my grief and the ‘new normal’ that comes after the loss of your child.  I found it very helpful to take long walks at the beach and hikes in the mountains in Pacifica where we live. This felt like a very meditative physical activity where I could be with my thoughts and nature all at once. 

I started to research masculine grieving after encountering other men at HAND meetings with whom I shared this heartache.  I came across two very interesting books by Tom Golden called The Way Men Heal and Swallowed by a Snake. They both offered great summary content in an easily digestible format. In reading these books I learned that one way of dealing with grief was through side-by-side action versus face-to-face which is what our HAND support meetings offered. 

I realize that it is challenging to choose to dive into one’s grief and some may decide on Father's Day that they are not up for it.  However, when HAND asked me to host a memorial event for fathers in the Bay Area in celebration of our lost children I thought that a hike might be in order. This felt like the best way for us to honor our children and be active in our grief. 

The Father’s Day event was held on Sunday, June 19th at San Pedro Valley County Park in Pacifica where a couple of us met on a gorgeous sunny day.  This 4 mile low impact hike turned out to be the perfect setting for us to be with each other, out in nature breathing fresh air, listening to the sounds of the mountain all while completing a physical activity with other men with similar experiences.  We were able to walk with each other in our grief celebrating our children.  We started the hike with a moment of mediation and dedication and finished with some food, good conversation and a cold one. 

Simply put, it was a really nice way to just hang out with other guys who are walking in the same shoes, who have been through what I’ve been through and who understand my ‘new normal’. Please let HAND know if any fathers out there have some other great ideas.  Hope to see you at the next father's event, a HAND meeting, or out on the trails.


A doctor's moving letter to any parent who's ever lost a baby

Published: Jun 14, 2016, TheBabySpot.ca  |  By: Dr. Karen Johnson, a member of the Perinatal Pediatric Advanced Care Team (PPACT) for the Fetal Center and Newborn Center of Texas Children's Hospital, and an associate professor of Pediatrics in the section of Neonatology at Baylor College of Medicine. 

As a neonatologist, I care for the sickest babies in the hospital.

This is a letter to the parents that no one wants to talk about. The parents that never get to send out birth announcements. The parents that never get that first smile or first step. The parents that say goodbye when they should be saying hello. I wrote this letter for you.

It all starts when you find out you're going to have a child. You're going to be a mom! You're going to be a dad! You make that first doctor appointment and all you can dream about is that first sonogram and hearing that first heartbeat. You wonder who your child will look like and what their personality will be like. You never imagine that you will never know.

Then you get a phone call that brings you to your knees. You hold on to the hope that maybe the tests are wrong. That hope gets you through the myriad of consults with genetics counselors, maternal fetal medicine specialists, cardiologists, neurologists and surgeons. Hope that you continue to cling to, hoping beyond hope, that just maybe these tests will prove that your baby is healthy.

The answer is no, your baby will not live a long or a healthy life.

And now you lie awake at night wondering, what do we do now? You wonder, why did this happen and what did I do wrong? The answer is, you didn't do anything wrong and we are here to help. You were dealt the toughest hand in this life. It is a hard, long road you are about to walk but we are here to support you. I have made it my life's mission.

My job doesn't stop when the bad news comes.

No matter how long your child lives, every baby is loved. We discuss how to make your child comfortable and how to keep your family together from the first breath to the last. We develop a plan for feeding and to care for all aspects of your child's life and in doing so, know how much your child is loved.

We work with our child life specialists to develop legacy items of pictures, videos and foot and hand-print molds. While your precious one may not stay with us in body, we work to make sure you have as many lasting memories as possible.

We also offer resources for your family to bring your child into your faith.

We honor your roles as parents, the role this new child holds in your family, for however short or long and as you say goodbye to your precious little one, we hope you remember that you honored this new life and that legacy of love will live on.

This child will always be yours, and you will always be a parent.

Amber Scorah and Lee Towndrow's first child, Karl, died unexpectedly when he was three months old. As they grieved, they also decided to have another baby.

Olympic grief

By: Melissa Reitano, mom to Jack, Lucy and George, and wife to John. Jack lived for a full-term pregnancy and one full day after, and Melissa still sees and feels him everywhere she turns. And she often feels like she’s the only person in the world who doesn’t like the Olympics. 

The Olympics are here again. This troubles me. Four years ago, I was an expat living in London and 9 months’ pregnant with my first child. We had gone to a few events, and I remember feeling pretty cool about being this heavily pregnant lady who was nevertheless out and about, experiencing a monumental opportunity at the most monumental time of my life. I loved the idea that this would be something my unborn child would tell his friends someday – that he’d been at the 2012 Olympic Games in London. And he’d feel cool about it, too.
 
We never found out the sex of the baby, but we both knew it was going to be a boy. We were silently elated about this. We were at a beach volleyball match at the Horse Guards Parade when my first serious contraction happened. Not knowing what to expect, we hopped into a Black Cab and went home, and started timing the contractions.
 
Four days later, Jack was born. 25 hours after that, Jack died inexplicably.
 
Inexplicably at the time, I should say. A month after Jack died we learned that he was not born as healthy as the hospital led us to believe. Due to his poor condition at birth, which was never communicated to us, Jack was put on transitional care observations, which again was never communicated to us, nor were they carried out. These are confounding facts that we still grapple with.
 
My story of loss is unique, as everyone’s is. Mine involves hospital negligence in a foreign country, numerous investigations and still no resolution as to what happened (they ruled Jack’s death a SIDS). What I do know is that Jack was with me at the Olympics – at a gastropub in Primrose Hill watching the Opening Ceremonies, at a boxing match at the O2 stadium. And shortly after, he was gone.
 
What I imagine is not unique for us, is that we all have something – some sound, sight or smell – that can instantly transport you back to your loss. And if you’re like me, it can reduce you to a puddle.
 
For me, that’s the Olympics. And that’s just one of many things. The Summer Olympics were in full swing with extraordinary fanfare before, during and after my baby died. I was surrounded by the sound of that perennial, celebratory trumpet. And then I was shrouded by the darkest cloud I never knew existed.
 
Four years later, I’m trying to not be reduced to a puddle when I hear that trumpet – or at least, I’m trying to materialize relatively quickly afterwards. For one, because I have been blessed with two beautiful, healthy children after Jack, and they need for mom to not be a puddle (or maybe just after their bedtime). Secondly, and certainly this is a more superficial reason, I would like to like the Olympics again. Maybe Michael Phelps and Usain Bolt will still be around in 2020 and I can see what all the fuss is about.
 
Living like this feels like the world’s biggest balancing act. Reconciling your loss with your reality. Remembering a lost baby while being present for a living one. I don’t think I will ever be good at this act. But maybe I don’t have to be.
 
And maybe it’s fitting that the Olympics transport me to my brightest moment, and then to my darkest hour. The Olympics can turn the highest aspirations into a broken dream in the blink of an eye. Jack was my dream. He came true. And then he was gone.
 
But Jack taught me how to love and live beyond myself. And that is hopefully benefitting his younger siblings. He will always be my firstborn child, and he will forever live in my heart and head. And when I hear that reminiscent sound, see that sight or smell that scent, I will think of Jack. And just like the Olympics, my grief will return.

Not Until Tomorrow

It will always be
Just
Yesterday
Despite the
Days
Gone by. 

Remembering 
My depth of
Pain
The night
Little Ronin 
Died.

I wonder still
How
To behave
My heart with
One
Beat less. 

My soul aches
Always
Evermore
To have a 
Last 
Caress.


"Time heals,"
People mostly
Say
I work
Then
Smile and
Play. 



But my fractured heart
Wants 
Nothing
More 
Than to be
Whole again
Someday. 

So I beg it
Please
With its hole-like
Void
To replace my 
Well of 
Sorrow. 

It answers
Back
With its
Lamentful
Song
"Not until
Tomorrow."

By: Grandma Barbara Keating, who wrote this poem after losing her grandson, Ronin, in the spring of May 2008.

Births


Beno Pinheiro Oliveira - to Roberta Pinheiro and Flavio Oliveira, and big brother Enzo. Remembering baby Deco. 

Naya Amelia Aizen - to Jonathan and Ofri Aizen, and big brother Yahli. Remembering baby boy from July 2015. 
Thank You for your Donations
Anna Heffron (in memory of Michal Ada Heffron on her 37th birthday)
Esther & Saul Twicken (in memory of Talia Elise Nelson Twicken)
Irene & Maia Lustgarten (in loving memory of Talia Elise Nelson Twicken)

Katie & Patrick Matza (in honor of Fiona Mae Matza)
Straw Restaurant (in memory of Leo M. Feingold)
Joanne & Michael Regalia
Amanda L. Anderson
Claudia Rodas
Cherisse & Kyle Eisenberg (Strength After Loss) 
Doris & Khoon Lee (Strength After Loss) 
Beth & Mark Wolly (Strength After Loss) 
Michal & Brad Levin (Google Matching Gifts Program)

 
Make a Donation
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HAND of the Peninsula Website
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Have a story, poem or article to share for our next newsletter? Let us know!
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