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.

Wednesday, March 12, 2014

My Angel



This article was written and submitted by Amber-Rose Aparicio.

I lost my Son JonPaul on December 9, 2009 at almost six months pregnant. He was perfectly healthy in every way, but he became entangled in his umbilical cord and passed. I didn’t find out for almost two weeks. He would kick from time to time, so I had no suspicion anything was going wrong.

I am a very spiritual person, and it has comforted me to think that his tiny force or the Universe elected him to be a sacrifice for me. I was in an incredibly abusive relationship with JonPaul’s father, and there is no telling what might have happened to myself or my Son had he survived and what kind of life we would've had if I was still with him. Especially since the day of my appointment, the day I found out my son had died, we argued about him drinking and driving the night prior and he ending up throwing me to the ground. I fell in a way to protect my JonPaul, but I didn’t know he was already gone.

A year later, I was able to orchestrate a way to remove the father from my life for good. That was three years ago, and I haven't looked back. My grief is a strange one--I cannot think about it without thinking of the situation with my son’s father. My son’s father stole my grief in the days to follow, telling me how glad he was that the baby was dead because I'd make a horrible mother and that “it” probably wasn't his anyway. I had to walk on eggshells every moment until he was forever removed from my life.

It is such a bittersweet predicament. I'm a firm believer that everything happens for a reason. I obviously want my Son with me today, but at what cost would that come? I have faith that my son is safer where he is than ever spending one day with his father. 

 My Angel
How different my life would be,
With a one year old in tow.
But now I fear that is a joy,
I never again will know.
They say things happen for a reason,
But did it have to be me?
The future looked so bright,
For this eager Mommy to be.
Now I have my very own Angel,
And you're always by my side.
When days I feel my most at worst,
Through the radio waves, you serve as my guide.
Songs of a brighter future, 
Of dreams yet come true.
The past behind, so unkind,
Freshly laid roads anew.
As you lay within the star,
That hangs so near my heart.
Vibrations of your spirit sings,
"We shall never be apart."
I cherished the day you came to me,
I lament the day you departed.
A hole entirely too big,
Mocking the term "Broken Hearted".
I know it's not my fault you're gone,
Life just had your number.
In my dreams we dance and play,
All the while I slumber.
Yes indeed my life would be different,
I crave it like no other.
I am grateful for the time we had,
And lucky to still have your brother.
It will never be forgotten,
Your sacrafice for me.
I'm so proud to be your Mommy,
Forever my Angel you will be.
Amber~Rose Aparicio
February 2011 
 
 Unbirthday
Mommy mine,
Don't you cry.
Mommy Dear,
I hear you sigh.
Today is April 21st,
I was to be in your arms.
Today instead of a child's cry,
You wake up to alarms.
What was to be my day of birth,
Is now just another day.
What was to be a day of joy,
Is now clouded with dismay.
No party planning will there be,
No pictures of my icing face.
No sugar induced tantrums I'll throw,
Only a mundane work day in it's place.
All I can offer to you,
Is my guiding heart.
Think of all the new wondrous things,
Your new life you have to start.
Take this chance that you have,
Open your heart for it to sing.
The talent that lies within you,
Imagine the joy it will bring.
In your dreams, tonight we'll meet,
You'll bring the cake and candle.
But it will be my gift to you,
Shower you with all the love you can handle.
When morning comes Dear Mother,
Take a deep breath and you'll see,
That every one that you take,
Is a celebration of me.
Mommy mine,
Don't you cry.
Mommy Dear,
Hold your head up high.
Amber-Rose Aparicio
February 21, 2011