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Swell Hearts

When the Heart Breaks: Part 2

When the Heart Breaks: Part 2

Celebrating Cherished Lives Through Pregnancy + Infant Loss Awareness Month in October

Understanding grief and how it can affect parents is one component to raising awareness. The other facet is what we as friends and family do to support those whose hearts are aching. We hope this collection of vignettes from parents who were touched by others through their heartbreak will help empower you to be strong and visible during their darkest days.

Don’t shy away from their sadness. Be a brave + kind supporter.

Look for ways to do thoughtful things. You don’t have to have anything to say. Just be present. Send a note. Send a text. Send another text. “You are on my mind. Love you much” is so simple. It means something. Surprise them with a gift card to a new restaurant, tickets to a show or concert, even tickets to the movies. They may not be ready to use them right away, but they can look forward to enjoying your gift on a sunnier day. You don’t have to overthink it. Whatever you do, just don’t avoid them because you are fearful of what you might do wrong. Kindness transcends uncertainty. People get it when you do something, anything, to show you truly care. And they will always remember.

I want to point out the uniqueness of grief support for families that are impacted by Sudden Infant Death Syndrome (SIDS).

SIDS is the leading cause of death in infants. Because it is sudden, unexpected, and unexplained, parents not only have to deal with the utter pain associated with losing a child for no apparent reason, but they are also subject to a thorough criminal investigation because of this. Before judging a parent, please give them the benefit of the doubt and let them have the dignity they deserve while processing an experience no one should ever have to live through.

Here is a quick guide with examples of what to do and say to help grieving parents.

 

Julia

My Life in Transition

Baby Wren

“For anyone who's trying to support their friend suffering a loss, and you just don't know what to do or say? Be there. Don't be afraid to say the wrong thing and offer a shoulder, an ear, a cup of coffee or some wine. Don't make light of the situation but don't gloss over it, either. Weeks and months later, don't be afraid to tell her that you love her and are thinking about her. I found that a simple 'I'm thinking of you' message went a long way for me. You don't have to say all of the right things. Just being there is enough."

Keri

Millie Anna

June 13, 2014 - June 16, 2014

I go visit Millie every day.  Weather permitting. I keep live flowers on her grave and I also go for morning walks at the cemetery. During my time out, I reflect on many things. Mostly about all the things God has done in my life.  And I know even in the bad I desire for Him to shine. Yes, it's not fair! Yes, my situation stinks! Yes, there are days I don't want to get out of bed because it hurts too much! But I know My God sustains me! He holds me in His hands! And He knows each tear that I have cried.

I trust Him wholeheartedly. It's not always easy and there have been times where I have been very angry but I don't allow myself to dwell in this place.

One day visiting Millie I arrived to find a yellow Calla Lily laying on her grave with a tag attached that said...

"A yellow Calla Lily for baby Millie."

My heart was so overwhelmed and overflowing with gratefulness.  Someone other than me was coming to spend time with her!  She hasn't been forgotten!! Someone else's heart hurts with me.  In the midst of my grief I forget that I am not alone in this. I forget that my life isn't the only life Millie touched!

Photo by Lindsay McManus

Maddie was only 17 months old when Millie was born. Throughout my pregnancy we would point to my belly and say "baby, "Millie," or "sissy" but she never really got it.

She would point to her belly or go get her baby doll. So the concept of a baby being in mommy's belly was nothing to her.  However, the first and only time she got to meet Millie she walked into the NICU and pointed right to the incubator and said "Baby!" I will never forget that moment!

I know that at 20 months old she hasn't or can't yet relate Millie and who we call "Sissy" being the same person. And I know that when I tell her we are going to see Sissy this may confuse her but understanding will come with time. She will always hear about her sister and know where she is here on this earth and she will know that she will see her again one day in Heaven.

We have our daily routine of going to the cemetery, watering the flowers and then going for our walk. One particular day our little family was heading to town to go have lunch.

As we were about to pass the cemetery, Maddie speaks up and says "Sissy" and is pointing in that direction.

Immediately my heart starts to flutter and my eyes begin to tear. So of course we had to pull in and get her out. She knows exactly where to go. She goes and smells the flowers, sits down on my lap, we talk a little, and she gets up, says bye, and blows kisses! Puts a smile on my face every time! I love my girls and I tell them every day!

-

Learn more about Millie's Legacy of Kindness here.

Mary Elizabeth

Mary's Blog

A Few Excerpts from her Guide to Help a Grieving Friend

Baby Warren

  • Know your grieving friend will be inundated with flowers. Consider waiting and send yours a month out or on the 6 month, 9 month or 1 year anniversary. It is really nice to know people still remember even several weeks out when others’ lives return to normal but the grievers still find themselves flattened amidst the rubble.
  • Remember important dates/anniversaries/holidays. Some of the happiest times for most people can be the hardest times for those who are grieving, stirring up many emotions and feelings of emptiness.
  • Promise you will always remember this loved one, even if/when the world forgets. It helps to know your loved one made an impact during their time on this earth.
  • Include your grieving friend and invite him or her to things. But understand if he doesn’t want to or can’t go. Give your friend freedom but still include him.  No one wants to feel like a leper or alien (yet your friend may feel this way for a season).

Holly

Kinsley Banks Moody

April 5, 2014

We never thought it would happen to us, but here we are. We lost our sweet and beautiful baby girl; Kinsley Banks Moody, shortly after she was born to an undiagnosed Congenital Diaphragmatic Hernia.

When the unthinkable happened in our lives, we received an outpouring of support from friends, family, community and even strangers. We were truly amazed at how God’s love was showered upon us by his people. God showed us over and over again the kind and gentle spirit of our daughter through those around us.

We received prayers near and far and hundreds of the kindest cards, which helped us to survive some of the darkest days of our lives. It is amazing what the love and support of others even through something simple like a card can do to help bring you through hard times.

The support did not end with cards, almost every day for months we received delicious meals and desserts from coworkers, family and friends.

We began receiving monetary donations to lighten our financial burden with the funeral and mounting medical expenses. My brother set up a Go-Fund-Me page and my church (Faith Lutheran Church) along with many of my family members set up a porta pit chicken fundraiser with unbelievable support from both fundraisers. Many gave donations to our church to Kinsley’s memorial fund. We will be able to purchase something for the church in her memory.

My dad started a new Sunday school class called the “Kinsley Banks Moody” class. It is a class for all ages, and has already led people who had not been coming to Sunday school or church, back to Christ. We received many beautiful plants, as memorials to Kinsley, to plant in our yard. We have two Dog Wood trees, a Magnolia, and a Kwanzan cherry which are all planted in our yard. We will watch these beautiful trees grow from year to year and always think of Kinsley and how big she would be if she were here with us.

I have received many pieces of beautiful memorial jewelry. Some of my good friends got together and made me a beautiful diamond ring with Kinsley’s name engraved on the inside. My aunt and cousins gave me a necklace with a “K” on one side and “a moment with us, forever His” on the other side. I was given a little cross necklace from another aunt, which was a gift to Kinsley. It hangs beautifully in a shadow box where I can look at it every day.

My mom gave me an origami owl necklace with my children’s birth stones and an angel in the locket, and “mommy and me” pearl bracelets. Stephanie, a good friend and fellow bereaved mother gave me a beautiful necklace with a “K” and a “B” and a cross. Amanda, another good friend and fellow bereaved mother gave me a “breathe” bracelet which is to remind me to breathe and rely on Christ during difficult times. My dad gave me an angel necklace and “K” and “B” initial necklace with their birthstones.

My Kinsley jewelry helps me to carry her with me always. It is a comfort to me, more than those who gave it to me could ever know.

My mom gave me a rabbit with Kinsley’s name embroidered on it. It has been a great comfort to me when my empty arms long for something to hold. A small white porcelain angel appeared on Kinsley’s marker in the cemetery, and to this day we do not know who put it there, but it means so much that someone thought of Kinsley. Keri, another friend and fellow bereaved mother (there are far too many of us) gave me a beautiful glass hummingbird to hang in my window as a memorial to Kinsley. A shop owner named a beautiful blanket after our Kinsley. We have been blessed by many through our tragic loss, and Kinsley has been a blessing to many even though she only lived a short time here on earth.

Coping with the loss of Kinsley has been the most difficult thing I have ever done. There are so many ups and downs. I never know when a flood of emotions will come upon me and where I may be when it happens.

I physically ache from the pain of missing my baby. My arms are so empty.

I feel like those around me have no idea what I am going through. Unless they have lost a child, they really do not.

Grieving a child is a lifelong journey. I will never be over losing my baby. She will never be replaced by having another child. Talking about Kinsley helps me to cope. Bringing her up does not make me sad. She is always on my mind.

My husband and I attend a support group called Circle of Hope, with other bereaved parents. This has been very helpful and gives me a safe place to talk about Kinsley.It hurts me when no one asks to see her picture. She was so beautiful. I have pictures on my phone of Kinsley, just like I do of my son.

I always want to hear someone say her name. It is like music to my ears.

A hug, a prayer and a simple “I’ve been thinking of you and your family or thinking about Kinsley,” go a long way when I am feeling sad.

My prayer is that others will remember my daughter, as I do, on her birthday, holidays and everyday. I pray that she will be acknowledged and others will say her name as the years pass by.

She did live and she does matter, and always will.

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Kinsley and Holly.

We named The Kinsley Forever Blanket in honor of this beautiful girl.

Jennifer

Riley Faith Blum

November 21, 2012 - April 12, 2013

My mother bought a red wagon for my daughter Riley. Riley never had the chance to use it but another family did. 

Riley's funeral director has become a great friend of mine. She told me of a family that lost their daughter. The father wanted to walk his daughter to her grave from the chapel. The funeral director asked me if she could borrow the wagon so the little girl could be pulled in it. She said she was going to decorate it and make it appropriate for the occasion.

Once I saw a picture of it, I told the funeral home I wanted them to keep it in honor of Riley. They said they would use it and tell other parents about my wonderful baby girl. 

Eryn

Evelyn Claire Elder

April 28th, 2014 – August 19th, 2014

How can you help me, a grieving mother? Call your Senators!

On August 19, 2014, my beautiful, inquisitive, and happy, Evelyn Claire Elder, passed away suddenly and unexpectedly. Evelyn was 3 months and 22 days old, and she was the picture of health. She was a very content baby, and she brought so much joy to my husband, Matt, and me.

As I happily drove home from work on August 19 to pick up Evelyn from daycare, I received a phone call no parent should ever receive. It shattered my world. I learned that Evelyn had stopped breathing during her afternoon nap, and first responders had transported her to the community hospital.

Everything was a blur of paradoxes and contradictions. I drove as quickly as possible; yet, I couldn’t get there fast enough. I felt so helpless, but I held onto an ounce of hope that she could be revived.

I ran into the Emergency Room, and I knew instantly as the receptionist took me back to a room that was filled with doctors, victims’ advocates, and other staff surrounding my hysterical husband, that Evelyn was gone from this earth. As it has only been one and a half months since she passed, I continue to have flashbacks about that day.

We knew Evelyn was special because of how ahead of the curve she was developmentally and how inquisitive and content she already was from the moment she was born. She would often sit and take in the conversation around her; she even responded to her name at 3.5 months, which is quite unusual. She was an “Old Soul” as many people who know anything about her continue to remind me.

Evelyn was the type of citizen who would have done great things for this world.

Even at her age, Matt and I were giving her a sense of purpose and reading Aesop’s Fables to her to teach her about morality and justice. She would have been an inspiration to anyone and everyone.

Unfortunately, Evelyn is not here, and I am navigating a new grief journey that has changed me forever. Evelyn, however, gives me strength to wake up each day and live each hour with a sense of purpose. Sadly, I barely have the energy to do what I want to do. 

As residents of one of the most affluent counties in the country, my husband and I have been blessed with a thorough investigation around our daughter’s death. At the same time, we have also continued to be actively involved, advocating for research on some of her tissue samples.

We realize that others around the country are not blessed with some of the resources we have. We know that at least 2,500 babies die suddenly and unexpectedly each year throughout the country, affecting mothers and fathers, families, and friends of all races and socioeconomic statuses, and with these deaths, grieving parents never receive any answers.

Therefore, it is imperative that U.S. Senators co-sponsor and pass S. 2746, the Sudden Unexpected Death Data Enhancement and Awareness Act, so that we may finally have a system in place that can guide effective research around these tragic deaths that take the lives of our most vulnerable population.

The Sudden Unexpected Death Data Enhancement and Awareness Act passed in the U.S. House with strong bi-partisan support on September 9, and the Senate HELP Committee must mark-up the bill before it can be taken up for a vote on the Senate floor. Currently, S. 2746 has six co-sponsors, but is in need of more co-sponsors. Therefore, I am asking you to contact your state Senators and ask them to co-sponsor S. 2746. It is especially important that you reach Senators on the HELP Committee. If you want instructions about how to contact your Senators about S. 2746, please contact me at erynelder@gmail.com.

More personal ways you can help grieving mothers and fathers:

  • For the next few years, continue to send sympathy cards and encouraging notes in the mail;
  • Be there and listen to grieving mothers and fathers talk about the sweet child they lost. Don’t shy away from the conversation;
  • Keep inviting grieving families to events. Even though they may say no, they need to know people care;
  • Don’t tell them how you think they are doing regarding the grieving process. Everyone grieves differently, and there is no “right” way.

Anonymous

Baby M

Devastated. Heartbroken. There are no words to accurately convey the pain of losing our honeymoon baby at 19 weeks, so those two words will just have to do

Without an amazingly supportive network of friends and family, I may have never emotionally recovered from our loss. For months, I woke up crying each day. No, it was not all some horrible nightmare. The loss was also accompanied with a painful delivery and mother nature's cruel reminders that my body thought I just had a baby.

It was my persistent husband, also working through his own grief, who forced me up out of bed each day. He challenged me to do just one thing each day. Leave the house just once. Even going to the grocery store was a milestone as I worked my way through the grief and depression. This love, patience, and compassion from my new husband made us stronger as we healed together. But it took time, so much time, to heal.

My equally loving friends emailed, called, and texted relentlessly to not only check on me, but also force me back out into the world when I wanted nothing more than to disappear. Friends brought dinner, invited me out for drinks, and met me out for lunch. They were patient with me and I will never be able to express how much I appreciate their gentle pulling me back into normal life.

Some friends (including my husband's best friend) never said a word to me about the loss. I get it. Some people don't know what to say or they are worried they will say the wrong thing. But just know that it is okay to simply say "I'm sorry for your loss" to someone after a miscarriage. Sometimes that is all you can say as no words will ever make it better or okay. But it will mean everything to the bereaved.

There is no textbook way to help a friend coping with infant loss. Everyone recovers differently and in her own way and time frame. Just being present and patient means the world to a grieving friend when her whole world is turned upside down.

Keep trying. Keep reaching out. Keep checking in. It won't go unnoticed.

A Few More Ways to Honor a Baby or Pregnancy Loss:

  • Donate your wedding dress or pale colored bridesmaid dress in a baby’s honor. Organizations will transform it into a beautiful gown for a baby’s burial. Most parents are unprepared for a child’s passing and rely on sewing guilds that donate these special outfits. Volunteer seamstresses are welcome to join this effort.
  • Plant a tree or a garden in a baby’s honor. This article contains tips and ideas for planting trees for children. Similar tips may apply to picking a tree to honor a baby’s memory. 
  • Donate to an organization such as First Candle that is dedicated to helping babies reach their first birthdays
  • Help plan or participate in a balloon release or special event to celebrate the baby’s life in a beautiful and symbolic way
  • Help plan or participate in fundraising campaigns that apply to the infant’s reason for loss. Examples include SIDS Research, Congenital Birth Defects Research, etc.
  • Coordinate a neighborhood effort to display luminaries along the street on the baby’s first birthday as a beautiful and tangible reminder of light in the darkness
  • Participate in Pregnancy + Infant Loss Awareness Day on October 15th by lighting a candle in honor of their child at 7pm. Join Swell Forever on Facebook for this virtual candle lighting event to spread light across the world in honor of these precious children.

During October, $15 of every Forever Bird gift purchased will go towards SIDS research.


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