Participants must be mothers whose babies died of SIDS in the last 4 YearsIf you participated in this study last year, thank you! You do not need to participate again.
To participate now, visit www.bereavementstudy.com .
As you all know, the feelings mothers have following the death of their child are complex and profound. They are very often experienced in silence and isolation. We want to understand your experience. Harvard University is conducting this research so that one day we can counsel others in what to expect and better understand who is at risk for more difficult reactions.
We plan to build on this research by designing support programs for those with the greatest need. But first we need to understand the broad spectrum of feelings and experiences mothers face after the sudden death of their baby. Your participation will help us do that!
Information collected on this survey will be used for research purposes only. Your responses will be kept confidential and no one will be able to link any survey information back to you. Data will only be reported on all respondents as a group; no individual responses will be reported. If you feel uncomfortable anytime during the survey, feel free to stop.
Thank you for your willingness to participate. If you have questions related to this study, you can contact the Investigator, Richard Goldstein, MD, through the Program on Sudden Unexpected Death in Pediatrics at Boston Children’s Hospital. He can be reached at 617.919.4513 or by email: robertsprogram@ childrens.harvard.edu.
Participate Now! www.bereavementstudy. com
With Valentine’s Day just behind us, I’ve been thinking about love. Not the romantic kind, but the kind we feel for our children. A Mother’s love. As I cleaned up to remnants of the Valentine treats I gave my daughters, I thought of my grown step-daughter and wondered how her Valentine’s Day had been with her own boys.
My step-daughter was just four years old when her Father and I got married. Since she already had a good Mom, there was no need for me to “fill in.” She and I decided we would just be close. I quickly found that there is nothing easier than loving a child. Ten years later, her Dad and I had a baby on the way. Many of my friends and family said, ” You will feel differently about your baby. A baby of your own is your own flesh and blood.” Inside I was nervous. I had loved my step-daughter for a decade and I was worried about how I might feel- and so was she. I didn’t want to make a difference between her and the new baby.
When the big day came and my baby girl came into the world, I fell in love with her the moment I held her in my arms. Much to my relief, it was the same love I had felt for my step-daughter all those years. The only difference was-it happened in an instant.
Now I know that you can love a child you did not “give birth to” in the same way as a child you carried. I feel the same way about all of my girls and I have never made a difference between them. The heart has an amazing capacity to love a child- it’s our faulty logic and overactive emotions that can get in the way.
If you are struggling to have a child of your own, don’t forget about all of abandoned babies, forgotten children and lonely teenagers who are desperately searching for a family to love them. You have so much love to give a child, so find a place to give it.
On Sunday we celebrated my daughter’s 15th birthday. As I hugged her tight and told her Happy Birthday, I was surprised when I started to cry. Not because she’s growing up, or turning out to be such a fine young woman, but because I wasn’t sure if she would ever get here. You see, my daughter is my oldest, but not my “first born.” I had a miscarriage a year before she was born that made me worry if I would ever have a family. It rocked my world, and my expectation of what my future might be.
When my daughter arrived it was such an amazing joy. One that I wasn’t sure I would ever have. And now, 15 years later, it made me “misty” as I wished her a Happy Birthday and remembered the day she was born, and how much we wanted and waited for her.
Trying to have another baby after losing one, was one of the hardest things I’ve ever done. I was terrified. Not just at the beginning…the whole time. I was embarrassed to share just how afraid I was that something would go horribly wrong…again. I pretended to be undecided when I reached the 8th month and I still hadn’t named her. I was too scared to get that “attached,” still panicked that it could all come crashing down.
All of that changed on the day she was born. My perfectly healthy, 7lb 3oz pound baby girl arrived. No complications, no problems, no horrible ending. I held my daughter tight, and I cried tears of unspeakable joy and relief. She was here- my family and my dream.
My husband was the one who kept encouraging me to try again. Thank God for him. I was so afraid of what could go wrong, that I almost gave up what is so right about my life- my family. Eight years later, I had another beautiful baby girl. She almost didn’t survive the first 6 weeks of the pregnancy. Just like her sister, she overcame the terrible odds I struggled with. And once again, I held my new baby in my arms.
If you are struggling with fear – don’t lose hope. Grief and pain can alter your perspective- it can paralyze you. It can steal your dreams and leave you feeling all alone. You can’t be too afraid to hope- to try again, and to keep trying. You never know what could be just around the corner.
A friend shared with me that her “word” for 2016 is hope. What a wonderful word- and an even better guiding force for the next few hundred days. She also shared an awesome TED Talk that focuses on that very thing- hope. If you are searching for more this year, desperate to leave behind the pain and grief of last year, this video is for you! Watch and be inspired!
As I think back over last year’s Christmas Holiday, there was another story of grief and loss; a baby that was never born. The grand daughter of a good friend experienced a miscarriage that was followed with three months of physical complications and pain. Her emotional saga finally came to a close with a final procedure that took place the week before Christmas. It has been a very difficult time for the family.
I thought about how many times I have seen and heard about stories just like this one in my many years of supporting families who are dealing with the grief and loss of miscarriage. The “regularity” in which it seems to happen is striking and disheartening. It could become easy to focus on this very sad reality. But then I think about all of the new babies that I have welcomed into the world this year, and years gone by, with gifts and showers and notes of congratulations.
Just like anything else, we can choose to see the tragedy the world can bring, or the hope we all long for. During the Christmas Season we tend to turn our thoughts to the joy and peace we’d like to have all year long- not just while we attend festive parties, eat our goodies and tear open gifts with family and friends.
When the tree is taken down and the gifts have all been put away the spirit and joy of Christmas can disappear as well. It can be tough to hold on throughout the year- especially if we are dealing with grief and pain. Unless we remember that Christmas is about a baby- a baby that was born to bring us a peace and hope that does not fade when the decorations are put away. Want to know more about this baby? Would you like to know a peace that does not get packed away in attic each year? Find a pastor, rabbi, priest, church or trusted friend who can tell you more.
May you find and keep the Christmas spirit throughout 2016 and beyond.
Note: This article is an update to a similar post we ran last year. We thought the new, happy ending was worth sharing. Enjoy!
Tomorrow is Thanksgiving, and as everyone prepares to eat way too much turkey, sweet potatoes and pie, our thoughts turn to the real meaning of the day. What are we truly thankful for? For those dealing with the grief of loss, this simple question can become very difficult.
So what do you do if you aren’t feeling so thankful this Thanksgiving?
First, realize that what you are feeling is normal, but you don’t want to get stuck there. If you’ve ever met anyone who is bitter, you have seen the results of being unable to find the good in life. Not a very good life.
There isn’t a “five-step” program or magic cure for finding thankfulness, but there are some things you can do.
Be on the Look Out.
If you aren’t looking for good things, they can easily pass you by. Grief can cause us to focus on the what is missing, and not see what is there. A simple way to do this is to get The Book of Awesome. This unique book helps you remember the little things that make us smile like catching all green lights on your way home or popping bubble wrap. Read a page a day to help you find things that you can smile about.
There are always others who have dealt with difficulties and loss, and have something to share about their journey. These are folks worth listening too- and one of them is Sam Berns. Sam is a high school student who has wisdom beyond his 17 years. Watch his inspiring TED Talk, My Philosophy for a Happy Life and you’ll see for yourself.
Focus on Others.
Sometimes the hardest thing to do when grief has caused us to lose touch with our thankfulness is to focus on anything else. One of the greatest ways to heal is to help someone else. It may seem strange to reach out when you are hurting yourself, but it is one of the most powerful things you can do to refocus your life. Read our previous post:
Finally, during tough times, take hold of your faith. Focusing on a higher power can shine light in times of darkness. Talk with your pastor, priest, rabbi or trusted friend. Don’t have faith? Find out more here.
Take the time this Thanksgiving season to work on your thankfulness, you’ll be glad you did.
Did you know that October is Pregnancy and Infant Loss Awareness Month? In 1988 President Ronald Reagan made a declaration to set aside this important month. Unfortunately, the President had a very personal experience with infant loss during his first marriage, when his newborn baby died just 7 hours after birth.
For families that have suffered miscarriage or early infant death, this is a time to reflect, remember and honor your babies.
Many years ago I saw the AIDS quilt and I was absolutely inspired by it. If you’ve seen it online or in person, you know how truly incredible it is. A handmade square is added to the quilt by friends or family members who want to honor and remember a loved one. The squares create a massive quilt that now has multiple panels and represents countless lives- individuals remembered.
When I saw the quilt I knew I wanted to do something for babies who died due to miscarriage or early infant death. Fortunately, I met artist Veronica Gray and together we launched the HOPE Canvas. The original canvas had 9 hand-made squares that were made by loved ones in honor of their babies. When the canvas was full I realized that there are hundreds of thousands of babies in the United States alone that die before or just after they are born. So we decided to make the canvas “virtual.”
We have moved the canvas to Instagram and invite you to add a square to honor your babies. This month of October, Pregnancy Loss Awareness Month, is the perfect time to remember your baby by creating a square for the canvas.
Please visit the HOPE Canvas page on this site to get more information on creating and adding your square to the canvas.
I hope you will take the time to remember your baby in this very special way. It can be a healing experience you can share with others, or keep for yourself. We know you keep your baby in your heart and we hope you will make your child a part of the HOPE Canvas.
On October 15, at 7:00 pm in all time zones, families around the United States and across the world will light candles in memory all of the precious babies that have been lost during pregnancy or in infancy. Too many families grieve in silence, sometimes never coming to terms with their loss. We hope you will join us in this national tribute to create awareness of these tragic infant deaths and provide support to those that are suffering.
Congressman Tom Latham of Iowa introduced a House Resolution supporting the Goals and Ideals of Pregnancy and Infant Loss Remembrance Day, October 15th, and calling on the President of the United States to issue a proclamation encouraging the American people to honor this special day of remembrance.
October 15 Press Release
For more information, please visit October 15th.
We can all remember exactly what we were doing when the attacks began on 9/11. It was a day that will be forever etched in our memories. For some, the day marked the tragic death of a loved one- a mother, brother, son, co-worker, granddaughter, spouse or friend. An unimaginable loss.
Death is an unfortunate part of life, but when it comes as a result of a tragedy, it seems even harder to bear. My family has suffered many losses since that day on September 11th, 2001. My beloved father-in-law passed away after a good long life, and a daily battle to breathe was ended. My young brother-in-law who fought for his country, fought his last gruesome battle with cancer and finally ended his painful journey. Both of these fine men are in a better place, and while we struggle to fill the holes in our hearts, we have peace.
The losses that haunt us, are the ones we don’t see coming. My husband’s best friend, an active guy and avid golfer, who died in his driveway of a massive heart attack. He was 41 years old. My excited family member who went to the hospital to have twin daughters, and brought home only one baby girl. The year before 9/11, I lost a baby of my own to miscarriage, before ever having a chance to be born.
When tragedy strikes and takes a loved one away from us, we feel a different kind of pain. The peace that can come from knowing that a painful illness has ended, or appreciating a long, full life isn’t there to comfort us. The chance to say goodbye is taken away. And these are the ghosts that haunt our sleep and make it difficult to heal.
So what can we do if we’ve suffered this kind of tragic loss? The kind that rained down on so many families on 9/11. There is never a magic formula to healing- it is such a personal and difficult journey. However, you must always begin with grieving. You have to feel the pain to move past it- really feel it. You can shove it down, avoid it, but it will be there-lurking and waiting to reveal itself. Grieve. When you’ve felt the pain you can begin the long process of healing. And it is there you have a decision to make. Will you live in the past, holding on to the pain of your loss, covered in the death of your loved one? Or will you move ahead, making a new kind of life, and finding a different happiness? A monumental choice to make.
On this 14th anniversary of 9/11, a date that marks so much pain and suffering, a monument now stands in place of the Twin Towers. The damage to the Pentagon has been repaired, and the pieces of the plane in Pennsylvania have been gathered. If you are grieving a loss today, will you pick up the pieces and move on? You are the living, so choose life.
Last week my family volunteered at a men’s homeless shelter, serving soup and sandwiches on a gray and rainy Sunday afternoon. I thought it would be a good experience for my teenage daughter who is enamored with $100 Nikes, Beats and iPhones. What I wasn’t expecting, was how that lunch would affect me.
As the men worked their way across the line, picking up soup and choosing a ham or PB & J sandwich- I noticed they were from all walks of life. There were young men, men in wheel chairs, older men- well dressed with slicked back hair. Some were dressed in their work clothes, coming over for lunch before their shift started. As I handed them a sandwich and chatted briefly with each one, I knew that every one of them had a story…and I wanted to hear it.
One by one, the men filed by, picking up their lunch and warmly greeting us. Some of them didn’t even choose what kind of sandwich they wanted- they were just overjoyed to have a meal. Every man thanked us, and many said, “God bless you,” as they reached the end of the line with their warm soup and saran-wrapped sandwich. One man said a long blessing over his lunch, visibly thankful for his food. I couldn’t get over how grateful they were for this simple lunch. It was humbling. I suddenly felt guilty and ungrateful for my complaints about the little inconveniences of life. These men didn’t know where their next meal was coming from and I grumble when the cappuccino machine at work is out of service.
I looked out over the men as they ate and wondered what circumstances had brought them there. These people were no different than my family and me. So why were they in line at a homeless shelter and why were we on the other side of the glass, serving them?
When lunch was over, I couldn’t stop thinking about the men at the shelter. As I laid down that night to go to sleep, I’m not sure why, but I started to cry. I thought serving lunch to a group of homeless men would be a nice thing to do- I had no idea what it would do for me. It was a vivid reminder that we should truly appreciate everything we have, everyone we love and everyone who loves us. Deciding if we will focus on what we have, or fixate on what we don’t have is a choice. Choose to be grateful today.