Sunday, September 22, 2013

Save the Date for Perinatal Bereavement Conference

Deep in the heart of Texas…..
Relationships in Perinatal Bereavement

19th Biennial
International Perinatal Bereavement Conference
Sponsored by Pregnancy Loss and Infant Death Alliance

November 6-9, 2014
Marriott Plaza, San Antonio, TX


Tuesday, September 17, 2013

Nate's Book Drive

This article was written by Christa Sumwalt for the Random Acts of Kindness Sept/Oct 2013 newsletter.

The pediatric cardiothoracic intensive care unit was a maze of machines, beds, and babies.  It was hard to believe that doctors could even operate on the tiny hearts of the babies.  In October 2004, one of those babies happened to be mine.  In a routine ultrasound during the previous summer—you know, the one where parents usually listen with delight as they are told the gender of their baby—my doctor told me there was something wrong with my baby’s heart.  The next couple of months were a blur.  By the fall, I was at a congenital heart center far from home waiting for baby Nate to arrive.

Nate was born on October 5, 2004.  Two days later, he had a pacemaker implanted.  Four days after that, he had open-heart surgery, what was supposed to be the first of three surgeries to make his hypoplastic heart function as normally as possible.  While most parents scoop their children into their own arms, our team of nurses carefully arranged vent tubing, IV tubing, and chest tubing just so I could hold my baby boy.  Life was anything but normal, but for my husband and me this was normal.  This was normal for us and the many friends we made at the hospital, the “heart moms” and dads who were also living such a surreal existence.

Every once in a while I could hear a cart rolling, and I would look up.  It was The Giving Library, a little library on wheels.  The cart was nothing like a traditional library.  We could pick out any book we liked and keep it.  We picked out many books and read them to Nate in the hospital.  Some were little board books.  Others were the books that we all read as kids.  I enjoyed the ritual of The Giving Library and receiving the books.  And I especially enjoyed reading the books to Nate.  In a world where little ones were waging such spectacular fights for life, where many of us couldn’t hold or even feed our children, we were able to read to them.  Reading these books allowed us to be a little bit normal.  At least Nate could hear our voices and our words.
Nate was discharged in late October, and we returned home.  At home, our lives consisted of around-the-clock medication schedules, NG tube feedings, and doctor’s appointments.  But they were also filled with wonderful memories of Nate like his cute frog outfits and his frog-themed toys.  I would smile when our cat, who was almost 4 times the size of our son, would saunter over for a short visit. 
Nate died at a therapy appointment in December due to complications of his heart defect.  All of a sudden, my little baby with round brown eyes, cute little lips, and soft brown hair was gone.   There are no words for this experience.  No, I really mean it.  When a spouse dies, you are a “widow” or a “widower.”  When your parents die, you become an “orphan.”  But when your child dies, there isn’t a word for the parents left behind.   Not one that I know of, at least.  I was a mom without a child.  One of those in the group that has no name. 

The first anniversary of Nate’s death was coming, and I wanted to do something to remember him by.  Nothing big, but something that could help others and to honor his short little life.  I remembered The Giving Library.  I decided to do a book drive and would donate the new and gently used books to our local hospitals.  I put the word out slowly.  I posted to my Carepage.  I sent e-mails out.  I asked family and friends to give books.  That first year, we collected only a modest number.  Each book had a label with an animated frog (a reminder of all the quiet frog toys and clothes still folded neatly in Nate’s old room) on the inside cover of the books.  And we took them to the hospitals. 

The second year, we did it again.  A local journalist picked up on our story and wrote an article for our newspaper that ran in early December 2006.   We found bags of books on our front porch.  Complete strangers read our story and sent us books.  Hundreds of books.  A friend asked if her daughter’s girl scout troop could do a book drive for their service project.  More hundreds of books.  We loaded the books on carts, just like the ones that we once heard rolling down the hospital halls, and hauled them into our local hospitals.  All of this kindness from our community from those who heard our story, and they listened.  And they took a moment to give.  To help.    

The book drive has continued through the years.  Thousands of books have been donated to hospitals in memory of Nate.  In the early years after Nate died, the books served as tangible reminders of Nate.  It was as if putting his name on the inside jacket of the book was a literal way of keeping his name alive.  As the years progressed, I have become more aware that his name and his memory will always be alive, but not because of the books.  His memory lives in the daily lives of those who loved him and knew him, whether they ever met him or not, whenever they took the time to give something precious to a child they would likely never meet.

Fast forward to fall 2010 when Nate would have been almost five years old.  I now held in my arms my 3 year-old son adopted from Russia at 13 months of age.  Andrew was at the children’s hospital for an MRI.  As we sat in the waiting room waiting to be called, we settled in at the play area, fully equipped with toys and books.  As I sifted through the books, I opened one small book.  There, on the inside cover was a familiar book label with a picture of a frog and Nate’s name.  I showed the book to Andrew and, of course, I was met with the look of a three-year old who just couldn’t grasp my excitement.  That was a sort of full-circle moment, a moment when I realized that through the pain and tears, that life does go on.  The kids in the hospital might never know our story but Nate’s legacy lives on.

We continue the book drive every year.  This October, nine years after Nate’s birth, we will load up our car and deliver boxes of books to the hospitals.  Maybe other families can take comfort by reading these books to their babies, just like we did so many years ago.  We hope so. 

Thursday, September 12, 2013

Kindness is Good for the Soul

This article was submitted by Share's Program Director, Rose Carlson.

Practice random kindness and senseless acts of beauty.
 ~Anne Herbert

It is quite possible that one simple little sentence, scrawled on a paper placemat in a restaurant in Sausalito, CA in the early 1980’s, sparked the concept of “paying it forward.” Random Acts of Kindness, or RAK’s, such as paying for coffee for the person behind you in line at Starbucks or taping a $1 bill to a vending machine may not seem to be all that significant in the grand scheme of things, yet those casual “little” things very often really are significant, not only for the person on the receiving end of the RAK, but also for the one performing it.

This is a topic I have been thinking about a great deal for many months. Around the holidays last year, I had the opportunity on one day to do several RAK’s. This past Christmas season was a bit different and difficult for my family for a couple of reasons, and that one day of focusing on others who were alone, hurting or missing someone special to them was honestly the highlight of the Christmas season for me. As I drove from store to store, shopped and found the most perfect gifts, and as I dropped them off at various places, the low mood I started that Friday with quickly dissipated. I truly felt as if I was “high on life” to use an old and worn out cliché. I went home at the end of the day feeling better than I had felt in a long time.

A short time later, I was watching a morning television newscast, and a guest psychologist talked about the benefits of performing random acts of kindness and how doing so actually stimulates the production of feel-good chemicals in one’s brain. As I listened to the show, I remembered how amazing, how humbled, I felt as I planned and carried out my random acts of kindness not only a few days before, but other times as well. I couldn’t get his words out of my mind.

While that psychologist was not specifically talking about people who are grieving when he said that performing random acts of kindness releases endorphins and serotonin, chemicals that nourish and improve one’s mental state, I couldn’t help but think of the parents I’ve met and the stories I have heard throughout my years at Share. The more I thought about it, the more I became intrigued by the subject, and I began scouring the internet searching for anything that verified what the psychologist I heard on television said.

And I did. I discovered much more information than I ever imagined I would. Research really does support the notion that doing kind deeds for others has a significant benefit on both emotional and physical well-being. I read article after article, each confirming that when people do kind things for others:

~ it generally leads to compassionate feelings
~ they experience a boost in self confidence
~ it induces feelings of gratitude for what one has rather than focusing on what is lacking
~ stress and even chronic pain may be alleviated
~ they experience what is called “helper’s high”—an increase in energy followed by a period of calmness and serenity.
~ it promotes a sense of connection to other people
~ aids in boosting your self-image

Additionally, doing kind, unexpected things for others, even small things, increases the amount of a crucial antibody that strengthens the immune system. So, not only does reaching into your heart to find ways to do nice things for friends and strangers make you feel wonderful emotionally, it can also help you feel good physically.

What I found fascinating the more I read is that these “feel good” benefits do not only affect those receiving and performing the RAK, but they carry over to those who simply observe one taking place. I read that many times, just witnessing a RAK can lighten a person’s mood for the rest of the day and even inspire that person to pay it forward. I read one article that mentioned a study done on women with Multiple Sclerosis who performed random acts of kindness; the study revealed that the women with MS obtained more benefits than those who received the act of kindness.

In a nutshell, showing kindness and generosity, even in small doses, is a win-win situation for all involved, and even those who aren’t involved.

You may be wondering what the point of this is, what it means to you as a bereaved parent.  What it “means” is that you may find a great deal of comfort and “feel good” moments when you do something for someone else in honor of your baby’s sweet memory. While doing so will not lessen your grief or make the death of your baby any less heartbreaking, it may do your heart some good to do something good. As noted above, doing things for others can promote a sense of connection to others—bereaved parents often feel a sense of disconnect, therefore, doing kind tasks may help ease some of those feelings. Additionally, grieving moms often feel lost and unsure of their purpose now that their baby is gone, and studies show that focusing on others can boost self-esteem and give meaning to one’s life.

There are so many possibilities and opportunities that I can’t possibly list them all, but in my 12 years at Share, I have witnessed a great many tasks and activities that grieving parents have taken on in memory of their babies. In fact, it is quite common that one of the first things grieving parents wish to do once the initial shock of their baby’s death has passed is something…anything…for others that will help heal their hearts and give their baby’s too-brief life a special purpose. Parents often call within a very short time of their baby’s death, sometimes only a few weeks, and want to know how they can help, what they can do to assist other parents in their situation. They may ask about starting a support group. Many want to know how to go about creating and donating memory boxes to their hospital. I have met parents who sew tiny felt shoes for babies who are in the neonatal intensive care unit as well as parents who crochet and knit darling little hats, blankets and wraps that will fit babies the size their baby was. I have been privileged to know countless parents and grandparents who have volunteered for Share in many different capacities:  Volunteering at fundraisers or in the Share office, moderating chat rooms and message boards, serving on committees, preparing bereaved parent packets, singing at memorial events, making awareness pins to hand out at events. It’s as if bereaved parents instinctively know that putting the abundance of love they have for their beloved baby to “work” will not only give their hands and minds something to do but also help heal their hearts and soothe their spirits. Over the past 12 years, I have frequently witnessed firsthand how often parents bring comfort to their heavy hearts and meaning to their babies lives when they give their time and talents to others.

In recent months, several parents I know have asked their friends and family members to perform an RAK on their baby’s birthday or other significant date and write about what they did and/or share photos. I know how much this means to parents when others also do things in memory of their baby, how comforting it is to know that on that one day, others are thinking of their child. Some of those parents have shared their stories in this newsletter.

If there is something that touches you or inspires you in some way, use your own creativity, talents and memory of your baby(ies) to guide you in finding a unique and meaningful way to honor them. In the process of making someone else smile, you may just bring a smile to your own heart at a painful time when smiles are likely rare. No idea is too small, so do not tell yourself that if you do not have the resources for something grand that what you do will not be good enough. Keep in mind these words from Mother Teresa:
We can’t all do great things, but we can all do small things with great love.

You may never know how far-reaching your acts of kindness will be and whose lives will be touched because of you and the great love you have for your baby.

Wednesday, September 4, 2013

Sept/Oct Newsletter: Random Acts of Kindness

The National Share Office has released the Sept/Oct issue of Sharing. The topic is Random Acts of Kindness and offers special stories of how kindness really touches bereaved during the grieving process.