Wednesday, July 16, 2014

Accepting submissions for the upcoming magazine...

We are now accepting newsletter submissions for the September/October edition. The topic is "When Children Grieve." The deadline is August 15.

While children may grieve just as intensely as adults, they are often called the "forgotten grievers." When their baby sibling dies, they may experience a myriad of emotions and reactions to the death. This issue will share ways families have helped their child move through his/her grief, including the difficulties. Parents are encouraged to share their children's art projects, writings and/or poems and other creative ways their children have dealt with their sibling's death. Finally, if you are a professional who works with grieving children, we would like to share any tips or words of wisdom you have to offer grieving parents.

If anyone is interested in submitting for this issue, please email Rose Carlson, rcarlson@nationalshare.org.

Thursday, July 10, 2014

Annual Share Walk for Remembrance & Hope

Mark your calendar to join us on 

October 18, 2014 
for the
13th Annual National 
Share Walk 
for Remembrance & Hope
at Creve Coeur Park 
in Saint Louis, MO



8:00 a.m.       Day-Of Registration Opens

9:00 a.m.       Creation Station Opens

11:00 a.m.      Memorial Service & Balloon Release

12:00 p.m.     Walk
Angels in the Crowd: Unable to attend? Participate in the Share Walk as an Angel in the Crowd and receive a t-shirt and program.

1-Mile Walk: All walkers, including families, first-time walkers and recreational walkers are welcome to enjoy a peaceful walk by the lake in Creve Coeur Park.

4-Mile Walk: Enjoy higher levels of fitness with this non-competitive walk/run around the lake and through the wooded paths in Creve Coeur Park.

1:00 p.m.       BBQ Picnic Lunch
Hamburger and hot dog barbeque lunches can be purchased on the registration form.  You will have the option to buy lunch on-site, but we encourage pre-ordering to guarantee availability.

For more info or to register, visit http://www.nationalshare.org/walk.html 

Monday, June 30, 2014

July/August Newsletter is Available

The July/August Sharing magazine is now available! The topic is Getting Away and provides articles and stories from bereaved parents about vacationing after their loss. The issue really has some wonderful articles, which we hope bring you comfort and hope for the future.

To view the PDF, visit http://www.nationalshare.org/JulyAugust.pdf

Am I Really A Mother?


This beautiful article was written and submitted to Share by: Marie L. Davis Caldwell

Spring will forever hold a new meaning for us. This time of new life will now remind us of how our daughter never got the chance to live hers here on this Earth.

Olivia was born still after an induction three months early. Due to the tightly twisted cord that stunted her growth, she was small for six months gestation, but no less beautiful and no less our child. However, days after her birth came Mother’s Day. As I listened to the sweet children sing to their mothers at church, I thought of how our Livy would never be singing to me. As they gave out gifts to the mothers, including me, I wondered if I really was a mother.

When we returned home, my husband helped to set me straight. He gave me two cards—one from him and one from Olivia. In each was a note he wrote from them. “Momma, thank you. You took the very best care of me while I was in your belly. What a wonderful Momma you are.” The other read, “Dear wife, I witnessed the most loving person I had ever seen...you were truly born to be a mother.” These words assured me that, YES! I am a mother.

I was reminded of all those pregnancy days when I talked to her and sang to her and rocked her in her nursery. I was reminded of how I was willing to do anything so she could be born beautiful and whole to be buried properly in a lovely place. No one other than a mother could feel this overwhelming love you have for that tiny little person you held in your hands. No one other than a mother could grieve as hard as you have. YES! You are a mother! YES! You are a father! And, YES! You should celebrate your day. Include your child’s birthstone in your mother’s ring. Include his or her name in your list of children when people ask, even if you only have one as we do. Parenthood is not just holding your child in your arms. Parenthood is loving that child more than you love your life. Countless thanks and endless love to my dear husband, and Olivia’s wonderful father, Doug, who has been my sole personal support through my continuing journey of healing. In memory of our awe-inspiring daughter Olivia. We love you darlin’. 

Monday, June 16, 2014

VOTE now for the 2014 Share Walk for Remembrance & Hope logo

Vote for the 2014 Share Walk for Remembrance and Hope logo by selecting the "Like" button of the logo you like best. You may only like each logo once however you may like more than one!  Voting will be closed Friday June 20, 2014 at 12pm CST.

https://www.facebook.com/pages/Share-Pregnancy-Infant-Loss-Support-Inc/112835372099879?ref_type=bookmark

Tuesday, May 20, 2014

A Special Dedication… To You, On Mother’s Day and Father’s Day



This article was written and submitted to Share by Lisa Weber, RN, for the Mother's Day/Father's Day edition of the Sharing Magazine. 
 
Society, in general, is experiencing an evolution in recognizing the significance of the loss parents and families feel when an unborn child dies. From our silent tears of pain to our shouts of anger and resentment, bereaved families are making others sit up and take notice of our grief. The impact of the death of an unborn child is not going unnoticed by those open enough to bear witness to our struggle. Mothers, fathers, sisters, brothers, grandparents, whose empty arms long to hold a live baby, whose voices speak of the sadness of death, whose minds sometimes wander off to dreams of cooing babies, whose nurseries remain untouched and whose lives will always remember the promise of new life, are testimony to this struggle. 

The journey through grief is filled with ups and downs. The “up” moments don't seem to come around often enough. The “down” moments are exhausting and seem to last for days. Bereaved parents are forced to learn patience. You can't rush grief; the healing process takes time. We learn ways to accept, embrace, and even understand that death is a part of our lives. Grieving moms and dads do not “get over” their loss.

We do not deny our feelings; we learn to incorporate them into our lives. Gradually, we focus on our future, as a person, as an adult, and always as a parent.

Our identity is determined by many factors:  What we do, the job we have, where we live, and many more factors. For some, being a parent is a major part of our identity. There are those of us who have no living children. I do not believe that makes us any less parents. We nurture our children even before they are conceived. We have dreams of the glow of pregnancy, delivering a healthy baby, the impact a child will have on us as a family, as partners raising a toddler to young adulthood. We nurture the expectations of parenthood, of being called “mommy” and “daddy.” Even though the differences in a family who have experienced death and those who have not are complex, the similarity of our desire to raise a family cannot be denied.

I have a son. I have a daughter. I am a mother. I am a father. I do not take my child to the park like some parents do—but I take my baby everywhere in my heart. She was denied this earthly existence. I don't know why. He will play catch in the stars, not on the ball field. She will never shop for a prom dress at the mall, and he will never ask for the keys to my car. But they are our children nonetheless. I will wear her birth stone around my neck. I will think of him everyday.
 
Acknowledge me on Mother's Day. Wish me a pleasant Father's Day. I need that support and acceptance as much as you. I am a parent. Mother's Day is to honor all mothers. Father's Day is to honor all fathers. As spring brings forth new life following the quiet healing of winter, let us welcome a rebirth of hope in our own lives. In recognition of childless parents, and those who have loving children but also have felt the heartache of the death of a child, this Mother's Day and Father's Day, my wish for you is one of peace, love, and to call to mind the dignity of parenthood. Share this newsletter with family and friends. It may help others understand our struggle to be recognized as unique parents.

Latest Share Newsletter: Mother's Day & Father's Day

The May/June edition of Sharing is now available! 

This edition provides stories from bereaved parents and professionals on how to honor yourself and your baby on Mother's Day and Father's Day, as we continue to navigate throughout each stage of grief. Please take a moment to read this edition of our magazine or pass along to those who may benefit from its contents.

http://www.nationalshare.org/MayJune.pdf

Monday, May 19, 2014

Return to Zero

RETURN TO ZERO is a drama, based on a true story, about a successful couple, Maggie and Aaron Royal, who are preparing for the arrival of their first child, a son. Just weeks before their due date they are devastated to discover that their baby has died in the womb and will be stillborn.



Maggie and Aaron attempt to go on with their lives as before but cannot escape their postpartum grief. They come to realize that their lives and relationship have been forever altered by this loss. They try to cope in a myriad of ways -- through denial, escape, and alcohol -- but when Maggie discovers that Aaron is having an affair with a co-worker, she decides to end the marriage.

Just when Maggie believes she has started a new life, she discovers that she is pregnant again by Aaron. With the help of her empathetic doctor who had experienced a similar loss years ago, Maggie finally grieves for the loss of her son. Through a turbulent and terrifying pregnancy, Maggie and Aaron reunite to see their child, a daughter, safely into the world.

Click here for more information! 

Here is a link to a great discussion and journal guide to begin conversation. 

Saturday, April 26, 2014

The 19th International Perinatal Bereavement Conference is quickly approaching

Mark your calendars!
The International Perinatal Bereavement conference in San Antonio is quickly approaching (November 6 - 9)! Registration is scheduled to open on May 1st, so stay tuned. In the meantime, visit PLIDA's conference website for the latest information!
www.perinatalbereavementconference.org

Friday, April 11, 2014

30 Days of Share - We Need Your Help!

Please take a moment to watch this video from bereaved parents, Share's Executive Director and the importance of this campaign, Because No One Should Go Through It Alone. 

http://www.youtube.com/watch?v=g8GbtxNiTi8

We are asking for your support in raising $5,000 to fund imperative perinatal bereavement training videos!

The development of this format will give thousands of nurses, chaplains, social workers and other healthcare professionals access to this important evidence-based training opportunity. In turn, patients will receive skilled care before, at the time of, and following the death of a baby.

As the remaining days of this campaign approach, we ask for your support and the support of your friends, family and co-workers. Even the smallest donation can help so many families that will face the hardest days ahead. If you decide to donate, please note on the donation payment page, an "Optional Processing Fee" defaults to a % of your donation. You can change that fee to $0, so more of the donation goes to Share.

We thank you for your continued support and generosity!

http://www.crowdrise.com/nationalshare2/fundraiser/nationalshare

Tuesday, April 1, 2014

Adjusting to Everyday Triggers



This submission was provided by Share's Board Member, Michelle Foster.
 
Car Stickers
Before I had children, I always thought of myself as being the type of mom to have those family stickers on the back of my SUV (not minivan!). A daddy and a mommy. Then kid stickers that would start as babies then grow into toddlers, children and finally the kids’ chosen sport-adorned teenagers. I couldn’t picture what being a mother would be like, but I could definitely picture the stickers.

And there were always two kids’ stickers on the back of the car. So what happens when you have two children, but one of them is in Heaven? The car stickers are not an option now. How would I represent my angel, Chase, on the car? Do they make angel baby stickers? If they did, wouldn’t that be extremely depressing to not watch his sticker grow next to my son Evan’s?

The answer to that question is obviously “yes.” There is nothing more soul crushing than losing a child. The car sticker scenario is just one of the things I grapple with as I grieve. It represents a whole host of things that are different than I ever thought they would be.

Birthdays, for instance. When I found out I was having twins, it was a shock. But when it sinks in, you start to think about what life is going to be like with two babies. And now, all that is gone. On Chase and Evan’s birthday, we will visit a cemetery. We will “celebrate” Chase’s birthday through tears and heartache, never feeling for one second like it should feel on that day. I will do my best to separate those emotions so that Evan gets the true joyful birthday celebration he deserves. But the broken expectations of those days will always be there.  

One of the other things I would think about after finding out about twins was going to the grocery store. That probably sounds a bit weird. But I always wondered if we’d have to have two shopping carts. I’d thinking about my husband and me wheeling both kids around the store. One cart will suffice now.

When you start to develop expectations of your life with your child(en), when those things don’t come true, it’s just a constant reminder of your loss. Nothing ends up how you thought it would be. Whether you lose a baby at 10 weeks or if you lose him at one month old, there was time where you dreamed of your new life.

After a loss, you work on building new expectations. And while they’ll never be the same, they can be great. I tell myself that they will be great, though it’s hard to believe sometimes.

Roller Coaster: Waves of Grief
Both of my sons started out their lives in the NICU, Chase passing away there after 30 days and Evan coming home to us 12 weeks later. They have some stock lines they like to use in the NICU. When you first enter there, they talk about how much of a “roller coaster” it is. In my experience, this is a horrible representation.

Think about a roller coaster. You hear the click click click and develop an exhilarating anticipation for what’s to come. Then as you reach the top, you start your descent. There were a lot of descents in the NICU, but there weren’t a lot of exciting and happy moments of anticipation. Most of the anticipation is full of fear and doubt.

For me, one of those moments of anticipation didn’t end with any upswing. It ended with me losing my first born son. Not a roller coaster.

I would say that the roller coaster metaphor better fits my experiences after my loss. I have Evan and he gives me joy…He takes me to the top of the mountain. I am fortunate to be able to separate my feelings about losing Chase from the happiness I get from Evan.

But still, I’m only one person, so it’s nearly impossible to feel dual emotions. One minute, I’m marveling at Evan and the next, I start the rapid descent to despair when the gravity of losing Chase hits me.

Downward, so quickly, to a place where there’s nowhere to go but up. Most times, up doesn’t come as quickly as I would like.

When you experience the loss of a child, the ride never stops. I hear from other bereaved parents that it will change over time, but still – we’re strapped in until the end. Riding this ride that we never thought we’d be on …We didn’t get in this line. For some of us, we never fathomed this ride even existed.

Nevertheless, I’ll ride this never-ending roller coaster and pray for more ups and fewer downs.


The Unfortunate Truth About Tax Season
My husband and I just did our taxes. We lost our son, Chase, at one month old last year. I experienced an intense wave of grief first when I realized Chase would be on 2013’s return as a dependent. My baby is on my tax return. He existed. He was here with us, even if for a short period of time. Too short.

My second, even larger, wave of grief came when I realized that he won’t be “counted” on 2014’s return. It feels like Uncle Sam is playing a cruel joke on me. He was here, now he’s not. Here’s another reminder (as if I need one) scheduled for April 15, 2015.

But then, when I read the tax rules, I learn that mothers of stillborn babies don’t get to claim their children on their returns. Those babies matter. They have forever changed the world by being here. As have the babies who didn’t make it as long.

The tax process is cold and impersonal. It’s about numbers, not about emotions. Sometimes, numbers are easier to focus on while walking along this empty road. They are steadfast, and sure, you can manipulate them to a point, but they are still rather inflexible.

Then you have your emotions, your feelings, your heart. These things are less steadfast. One day, you can be going along, feeling good (whatever that means). Then the next day, you could struggle to get out of bed. Little things can send you spiraling out of control.

When you mix these two worlds together, “tricky” doesn’t even begin to cover it. When we file our taxes next year, I will have to resist the urge to scream from the rooftops that I have two children, not one. Yet another tangible reminder of my loss. And just because he’s not here, doesn’t mean he’s not real. It doesn’t mean he doesn’t have a continuous impact on the world.


Luck?
Do you ever feel lucky? There is probably a small distinction between being lucky and being blessed. I know I’m blessed. But I don’t feel lucky.

It’s weird to think about being lucky in the context of life in general. You play blackjack and hit an ace king. That’s pretty lucky. You win the 50/50 at trivia night. Exciting moment. But in life, is there luck?

I would guess a lot of people that utilize Share’s great services and support don’t feel lucky. If we were lucky, we’d have our babies with us. If we were lucky, we wouldn’t have the unfortunate benefit of perspective that no matter how bad things seem, they can always get worse.

I certainly didn’t feel lucky when I held my son as he left this earth, And despite all of the blessings that have happened to us since his passing, his twin brother’s health, my husband’s promotion, our beautiful home, I still don’t feel like there’s any luck in my corner.

I guess that’s why I’m glad I draw the distinction of blessings and luck. I can see my blessings every day, even if they look blurry through my tears. Right now, I understand that the 30 days I got to spend with my son, Chase, were a blessing, though serve little consolation for my broken heart. I see a thousand blessings when Evan smiles and a million more when he giggles. My husband is supportive and amazing. He is a blessing to me.

I know you might not feel lucky, but I hope you can find you blessings.

Thursday, March 27, 2014

Sharing & Caring: Perinatal Training Registration Still Open


You still have time to register for the Sharing & Caring: Perinatal Bereavement Training next month in St. Louis, MO! For more info, visit http://www.nationalshare.org/sharing-caring.html

The objective of the Sharing and Caring Perinatal Loss training to aid those in the community in their supportive role. This workshop is open to anyone who wants to start their own Share Group, hospital chaplains, social workers, counselors, nurses, and bereaved parents. The training is a 2.5-day intensive training that gives anyone who works with the bereaved the tools they need to work with families effectively, run support groups, and gain the support of their hospital staff.

When is the next training?
April 23- 25, 2014

Where is the training held?
St. Charles Convention Center, St. Charles, MO

What Topics Are Covered?
Training topics include: Reflections on Perinatal Loss... Yesterday, Today, Tomorrow; Perinatal Grief; Variations in the Experience, Expression and Effect of Bereavement in Parts; Difficult Decisions; Children and Grief; Caring for Yourself; Establishing a Share Hospital Program; Rights of Parents: Choices or Mandates; Cultural Differences; Memory Making; How to Run an Effective Share Aftercare Program; and Fundraising

Are Continuing Education Credits A vailable?
This activity has been submitted to and approved by the Missouri Nurse’s Association for approval to award 17.75 nursing contact hours. The Missouri Nurses Association is accredited as an approver of continuing nursing education by the American Credentialing Center’s Commission on Accreditations.
It has also been approved by the National Association of Social Workers (NASW) for 17.75 contact hours.

How Do I Register?
For more information and to register, please click here or visit
http://www.nationalshare.org/sharing- caring.html.

What Others Are Saying...
*Not only was this program very informative and helpful, but it was also invaluable to me personally, which I feel will extend to those I service!

“Wonderful! I will be referring back to this conference for years to come. It has increased my confidence greatly in taking care of these families.”

“A good validation of the processes and programs my hospital already has in place; additionally, I am inspired by new and helpful ideas to make our program even better. Thank you!” 

Wednesday, March 19, 2014

The Day that Changed Our Lives



This story was submitted to Share by Linda and Frank Manzella.

After 10 years of marriage, my husband and I finally felt ready to start a family.  Due to my husband’s job, we have been living overseas for quite some time now and have really enjoyed traveling and experiencing different cultures, just the two of us.  We don’t regret one bit waiting until we were ready to start a family. Of course, we’re the last of the Mohicans as all our friends have long since had kids.  

We were absolutely thrilled when we found out we were having a baby.  Being first time expectant parents, we also felt very cautious and superstitious about everything; it really was all such a miracle to us.  We didn’t tell our family and friends until I was five months pregnant.  My numbers came in high on a specific test, which meant there was a higher than normal risk of Down Syndrome or spina bifida. This was probably because of my age; I was 36.  We decided to have an amniocentesis done, even though we would have had the baby with or without Down Syndrome. We only wanted to prepare our family if something was wrong and also have time to educate ourselves the best we could if it came down to it.  Anyway, after the amnio, we heard the news from our doctor that our baby was genetically normal.  We were so relieved, and that’s when we finally felt comfortable to make the big announcement to our friends and family. We also found out we were having a baby girl. While we wanted it to be a surprise, our doctor slipped a few times during our appointment and said “she.” So, even though we found out when we weren’t expecting to, we felt so blessed. 

Our six month routine checkup started off like any other. The appointment was going great…we heard her heartbeat, her organs looked great, she was growing normally.  Then, the doctor was measuring her head for probably only a minute, but it felt like a lifetime.  He said our baby’s head was slightly larger than it should be at this point but not to worry, he wanted to check her brain. Then came the dreaded words that changed our lives….”this concerns me.”   We were told there was a severe amount of fluid build-up in her brain, and this condition is called hydrocephalus.  He wanted us to go for another ultrasound the next day with a colleague of his, and he definitely didn’t sugarcoat anything.  He prepared us for the worst….he said the fluid was pushing down on our baby’s brain, preventing it from developing.  He felt very sure that our baby would pass away before the nine month mark, and if she did survive the birth, she wouldn’t live more than a year.  He said she was “incompatible with life” and would be suffering.  We were completely devastated and experiencing the worst shock of our lives.  Our tears shed immediately, and we had to wait the whole day and night before we would see the other doctor to have the other test done.  It was the longest day and night of our lives as we awaited this appointment. 

At the appointment, yet another doctor was called in, and no words were spoken for quite some time. We knew it had to be the worst case scenario.  It was confirmed her condition was so severe that nothing could be done; she was not going to survive.  Even though we had found out she was normal genetically, developmental problems can occur anytime during pregnancy or even after birth.  Reading up on it, I found out hydrocephalus is even more common than Down Syndrome, though I never really knew much about it.  I had just finally posted a photo of myself at six months pregnant on facebook.  Little did I know that a week later, everything would change for the worst. 
 
I gave birth at six and a half months pregnant to our beautiful baby girl Ava Marie on October 20, 2013.  She didn’t survive.  She was absolutely adorable, and she looked just like my husband with her dark hair. She also his same nose and lips.  She was so perfect looking one would never know anything was wrong.  She weighed 2.2 pounds and looked so peaceful, which gave us a sense of peace through our devastating grief. 

We thank God that we were able to spend time with her, holding her, kissing her, adoring her, talking to her, crying our eyes out.  We took a bunch of photos and have her tiny hand/footprints that we are so thankful for. We have her ashes that we hold together every night.  Her due date (1/23) just passed, and it’s been particularly rough.  My husband and I are Catholic. We believe in God but haven’t attended mass in ages.  We try to live our lives by doing the right things; we donate, volunteer, pray often and are kind to others.  

When tragedy strikes, it really makes you question your beliefs.  Why would God allow something so heartbreaking and devastating to happen to us? We are the two most sensitive people we know. Why was our beautiful baby taken away so quickly?  It’s completely unfair and really made us feel angry at the world.  People left and right announce babies so early on in their pregnancy like it’s a done deal, while we were so cautious and this still happened.  It just really makes us feel so angry and so jipped.  

Being angry though is normal, but it is not always healthy.  The only logical way we can get through this is to believe she is our angel watching over us.  I’m trying not to be angry with God as there has to be a reason this happened.  If anyone asks us if we have any kids, we always say we had our beautiful daughter but she’s in heaven.  She mattered, she counted, so I can’t just say, “No, we don’t have any kids yet.” One day if we are blessed with healthy kids, they will know all about their big sister Ava.  

No parent should ever lose a child; it is the most devastating pain ever. It is a pain we will carry for the rest of our lives.  It’s so upsetting; it feels our life is standing still, yet everyone else around us is going on with their lives as if nothing happened.  I’m not sure if anyone else has experienced this, but our friends have been so distant, not even writing to check up on us.  How can they think that saying nothing is better than reaching out to us?  It makes no sense, and people really act strange when tragedy strikes.  No words anyone can say could ease our pain, but at least try to be there for us.  That’s also made me angry, but I’m trying to find peace with it. I remind myself that people have absolutely no clue what we’ve been through and what we will live with forever.  We still believe in God through all this, but we have been quite angry with him.  We know he had to have a good reason for taking her so soon, and we look forward to the day we can see her again in Heaven.  We miss her terribly. We only met her for a short time, but she had such an impact on our lives. We will remember the moments we spent with her forever.  There is not a day that goes by that we don’t think about Ava and mourn for her.  We wonder what she would have been like, sounded like, etc.  It is devastating that we will never know her, and she will never know us. It is so unfair and heartbreaking.  I’m crying as I write this.  People who haven’t gone through this will never know this kind of pain or loss, and I wouldn’t wish this on anyone.  Thank you for allowing us to share our story, it is a real privilege and we look forward to reading your stories as well……so many of you are an inspiration to us and give us hope.