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!

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.

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!

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.

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.