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MARCH FOR BABIES
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Apr 20, 2012 04:16pm (EST)
It is hard to believe we have walked in our 8th March for Babies. Team Roo was formed seven years ago, and that first year, it was just the five of us, plus one set of grandparents. Even though Ryley was four, it still hit home. There weren’t many families walking that day, but as I listened to the Ambassador mom speak, the tears rolled down my face. I knew that she knew exactly how we felt. I said then we would walk every year. I needed to say thank to the organization that had played a crucial role in our lives. And I needed to have that day of celebration. I also needed to be around other families who had lived it.
March for Babies isn’t just the end of a few months of fundraising. It is a day to stand by other families who’ve been down the same road. It’s a day to say thank you. It’s a day to celebrate and honor. No matter how much work it is getting to that day, no matter how much I stress about the dollars coming in (or not coming in with the economy of the past few years), once that morning arrives, I am so excited. We wake up before the sun, drag the kids out of bed, get everyone in our Team Roo shirts and head for the walk site. And my breath never fails to be taken away. Seeing all those families with their team shirts, being able to talk to them and hear their stories, watching the hugs being handed out…..it’s healing and encouraging.
Why do we walk? Because someone walked before us, and their efforts funded the research that helped save Ryley’s life. We walk so that hopefully we can give that same thing to another family someday. We walk because nothing we do will ever be enough to say “thank you” to the March of Dimes. We walk because it’s cathartic for me. We walk because the kids ask to, and because I want them to learn early in life about giving back and reaching out to others in need. We walk because I have seen the looks on the faces of people who came because their company has a team, but by the time they leave that day, they have been made aware of the mission of the March of Dimes and they have been touched.
Team Roo has evolved over the past seven years. We’ve gone from double stroller, to single jogging stroller, to wagon, to totally independent kids walking along with everyone else. We’ve had as many as 15 show up to walk with us, and as few as me and two of my three kiddos. We usually have beautifully sunny days, but then we’ve had a couple of walks like this past one where it was windy, wet, and cold. No matter the weather, we’re there. I love being in the Family Teams tent, talking with other parents, watching them create their tiles or quilt squares. So much can be said without being said. I love the kids’ faces when we hand them bubbles or stamps.
-Donna, mom to Ryley born at 26 weeks now 11 and Grace and Ethan both full term
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Posted by stacyat | Comments: (6) | Permalink
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INFERTILITY AND GRIEF
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Apr 10, 2012 03:30am (EST)
Anyone who has dealt with infertility knows grief. First, you grieve the ability of your body, or your partner’s, to function in a way that will allow you to create a new life. Then, you grieve for the life you had when you were not consumed with charts, pills, injections, doctors’ appointments, and medical procedures ranging from annoying to invasive. Every time a friend or family member announces a pregnancy, you grieve for your own lack of one and for your ability to be happy for someone else in the way you would like to be. Month after month, you grieve that it is not YOUR month.\
Until, one day, it is.
The joy accompanying a desired pregnancy is immeasurable, but for couples who have struggled with infertility, achieving pregnancy is joy, relief, and incredulity all rolled into one. Simply becoming pregnant, which has been the goal for so long, feels like the end result. Of course a baby will follow.
Too many of us have learned that this is not always true. From an early miscarriage to a preterm birth to a still birth or a neo-natal death, the loss of a pregnancy, of a desperately desired baby, is indescribably devastating. To be doubly betrayed by nature seems, at times, too much to bear. The loss of a child is an unspeakable disaster for anyone who has experienced it, but losing a baby after struggling for months or years to achieve a pregnancy is the loss not only of a child, but also of an immeasurable emotional investment. It is the loss of the life you have envisioned for so long and it is the knowledge that you have to either recommit yourself to the grueling process of medically assisted conception or accept that you will never be parent to your biological child. Either choice, while grieving the death of a baby, is overwhelming.
And yet, we survive. We cry and rage, we stare into space vacant and numb, we sit with empty arms that desperately ache to hold the children we worked so hard to conceive, and, yes, we survive. We find ourselves back in the doctor’s office sharing the experience of losing a child with a nurse. We find ourselves telling stories of the brief time we had with the infants who died. We find ourselves moving forward despite the knowledge that we could lose again. We do these things because we are parents. The love that inspired us to pursue parenthood despite the obstacles grows and deepens when we have felt life inside of us, when we have examined the tiny features of our children born too sick or too soon to survive, when we have held the lifeless baby who was born still. It is our love, not our loss, that moves us forward.
No parent will ever fully recover from the loss of a child. No parent who has struggled with infertility only to lose a baby will ever see an elusive pregnancy as the final goal again. The only certainty is that hope will return. We will take the pills, inject the medications, submit our bodies to endless ultrasounds, and even surgeries. And we will never forget the babies we have lost. If they have taught us anything, it’s that being a parent is the most profound experience imaginable and it is worth whatever measures it may take to know that joy again.
Shannon Maxson, four year fertility patient, grieving mother of Tristan and Gunnar, living with hope.
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Posted by stacyat | Comments: (6) | Permalink
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A DIFFERENT KIND OF GRIEF, THE LOSS OF "PERFECTION"
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Mar 15, 2012 07:28pm (EST)
When you first find out that you are pregnant you are overwhelmed with so many emotions and dreams for the future. From the moment a woman finds out she is pregnant she becomes a mother and loves her child unconditionally. She only wants happiness and joy for that child, she dreams of it. Then in a moment that can all be taken away.
Finding out my child had a birth defect was the loss of all the hopes and dreams I had for the “perfect” pregnancy and delivery. I lost all the hopes and dreams I had. In order to be there for my child I had to give myself time to get used to my new normal. I had to realize that it was OK to be sad for what I had lost. That even though I was lucky, my child was still with me, I had lost something very important to me that I could never get back. I allowed myself to be sad about those things. I also had to learn a whole new language, the NICU language. I had time to prepare for it and get myself as ready as I could for the birth of my very sick child. I had to start preparing myself for his birth when I would not be able to hold and cuddle him moments after he was born, I had to give him a quick kiss and then watch him go.
Eventually I got used to my new normal. I integrated this new path my child had taken me on into my life. I realized that even though I had pictured my life going one way, it was OK that it had taken a whole separate path I never imagined I’d be on.
It’s OK to still get sad when you sit in the delivery room with other new mom’s as they cuddle their newborn. It’s OK to be jealous that they got their “perfect” delivery and you didn’t. It’s also OK if you have to walk out of a few delivery rooms before you are able to keep your own feelings in check, people will understand if you explain to them why it’s hard for you. No one is a mind reader and everyone believes that just because your child is alive you don’t feel sadness.
Well meaning people will say things to you that cut to the core, but they don’t know better. They say things they think they are supposed to that will supposedly make you feel better. Instead you just plaster on a fake smile and act like life is just fine. Through it all you will want to explain to them that even though your child is alive your child is struggling in the NICU fighting for every breath, undergoing surgery after surgery just to survive another day.
People who have never experienced a baby with a birth defect don’t know how devastating it is as a mom. The guilt that comes with it. Even though many birth defects have no known cause we still blame ourselves. We feel like if we had just done one thing differently the baby would have been OK, but it isn’t true. It may take years to let go of most of the guilt but over time it goes away.
Then one day you realize that it’s been a week since you’ve thought “poor me” and have instead have been thinking of how much your very special child has taught you. You will realize that even though you are years older than your child you have still learned a lot from them. Your child will teach you strength and patience. You will also learn to be a better advocate for your child, while struggling with the knowledge that every decision you make for their healthcare will affect their whole life. Over time you learn to trust yourself, somehow a mom always knows what is best for her child. Not everyone will agree with your choices, some people may be very vocal with their disapproval, but you learn to tune those people out. As the mother of a sick child you lost something very special but you have gained much, much more.
- Laura, mom to Nathan who was born with a birth defect and Trevor, born healthy at 38 weeks
Thank you all for reading! Stay tuned for parts 4 and 5 to this series!
Laura
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Posted by stacyat | Comments: (7) | Permalink
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THE EVOLUTION OF GRIEF AFTER LOSING A CHILD
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Mar 08, 2012 06:52pm (EST)
After losing a child your world is turned upside down. Everything you thought you knew as truth is no longer true. Up is down and left is right, nothing makes sense anymore. Your child is dead, something that seems so unnatural is now your reality. But slowly, through time, you adjust to your new normal. Left is still right, but you get used to it and you stop turning the wrong way every time.
The day you lose your child, you sit there with the thousand mile stare in the hospital. The nurses encourage you to hold your child, take pictures with your child, say goodbye to your child. It’s so surreal. You cradle your lifeless baby in your arms and do as they say. Then comes discharge day, and you walk out of the hospital with empty arms and empty belly and maybe a box with some keepsakes.
The next few days are full of numbness intermixed with periods of all-consuming grief and disbelief. People come and visit, bringing fowers, cards, and meals. You say thank you with a fake smile and glassy eyes and then return to your couch wishing it would just swallow you up. Later in the day you take two bites if you’re lucky before you just can’t eat anymore. You can’t possibly imagine life continuing without your baby in it. Yet there you are picking out songs, flowers, scriptures and quotes to include in their funeral. That, at least, gives you a purpose for the time being, something to accomplish, something to hold onto with your world spinning out of control. People surround you with their love and caring, but still, you are alone. Then comes the funeral. This brings you into reality, to a point. As you walk into the service and see the tiny casket or urn, you realize, that is your child laying there. Your child died, your child who weeks ago was safe and in the belly that you were lovingly stroking is now gone from this world, forever. It’s real, and there is no going back.
After the funeral, there is silence. Life goes on, returns to normal, a new normal. Your husband returns to work, and you may too. The phone calls and visits stop. No one mentions your child’s name anymore. It’s as if they have been forgotten, and that is your worst fear. You develop your pictures and realize, you don’t have a pictures of your child’s ear, or leg, or a picture of you holding your child skin to skin and you grieve that loss too. Even if you have a million pictures and mementos, it will never be enough. You start feeling the emptiness more than ever and are faced with living the entire rest of your life without your baby. The enormity of that prospect is soul crushing and it doesn’t seem possible. You hit rock bottom as you are left to face this seemingly alone.
Then one day you smile and are happy for a moment, but you feel guilty. Your child is dead, how can you be happy? You feel as if you’re leaving them behind by not grieving for them every moment. Through time, things get better, you’re smiling more and are happy more, but you still grieve and remember your little one, that will never stop. Remembering the little kicks and flutters inside your tummy or little movements you saw after they were born brings smiles sometimes, tears others. People ask about your children, sometimes you include your little one outright, other times you dance around the truth to avoid that furrowed brow and “the look” you receive all too often. Guilt is an ever present part of your life, but it’s not so all consuming anymore. You have learned to integrate your child’s short life into yours. They are a part of your everyday life and live on through you. Everything you say, everything you do is a reflection of having had your child in your life. Through you, they live on, and while it’s not how you ever would have wanted or dreamed it, this is now your life. And it can still be happy, it can still be full, and it can be complete, even if you are missing the little one you had with you physically for only a short while.
Thank you all for reading! Stay tuned for part three of our series on grief coming up soon!
Stacy, Mommy to Angels Emilyn and Hailey and their little brother Elim
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Posted by stacyat | Comments: (16) | Permalink
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THE TIES THAT BIND, A SHARED JOURNEY
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Feb 28, 2012 08:23pm (EST)
 “There is a sacredness in tears. They are messengers of overwhelming grief…and unspeakable love.” -Washington Irving
Moms-to-be want to plan their childbirth experience and how their baby is born. They and their partners anticipate the warm, beautiful emotions they’ll feel when they hold their newborn for the first time. But sometimes the options, the choices, and the beautiful feelings are stolen away by the loss of a pregnancy or a newborn. You may feel you’re bearing the loss and its accompanying sorrow alone. You may wonder how anyone else could possibly understand. And indeed, other people in your life may say things that minimize the loss or fail to recognize and acknowledge the meaning to you of the pregnancy, the baby, or parenthood. Even close family and friends may say, “it’s all for the best,” “you’ll have another one” -- words that are intended to help, but which only hurt -– hurt very deeply.
You are not alone. So many mothers, fathers and families are grieving the loss of a pregnancy – from early in the pregnancy to full-term, a premature baby, a baby with a birth defect, or a healthy infant or child. And although each person’s grief is unique, there are some universal emotions that thread us together in unity.
When something goes wrong in a pregnancy or in a birth, when a baby arrives too sick or too soon, when a pregnancy is lost or a baby or child dies, you may feel out of control and helpless. You may have done everything possible to have a healthy pregnancy and baby; there may have been nothing that could stop or prevent this unimaginable loss. But mothers often blame themselves and feel a terrible sense of guilt. Guilt can serve as a painful way to place order back in the universe when everything seems so arbitrary, senseless and chaotic. If I blame myself for my baby’s premature birth, if I can identify the reason I believe this happened, then at some very profound level, I can make sure that nothing like this ever happens again. In this way, guilt is a strange medicine. A medicine that restores some sense of control in an otherwise uncontrollable world.
Grief is not linear. It ebbs and flows like the moon -- the rawness does not just get better each day; instead some days we feel like we can get through and cope and then just when we feel stronger and more able, a day comes when the grief feels as raw as the first moment of loss. There may be triggers -– certain songs, a rainy day or a sunny one, hearing of a friend’s pregnancy, an invitation to a baby shower, the holiday season, the baby’s birthday or expected due date. It is natural to feel a stronger sadness, anger, envy when certain events or times come up. It can be confusing and overwhelming. Be patient with yourself and the emotions that come and go.
Embarking on a new pregnancy, can be very difficult too. You may be anxious and fearful about this pregnancy and worried about everything going right. Discuss with your doctor what happened in the previous pregnancy and birth –- your pregnancy and birth history are very important to determine the best treatment plan and the support needed. Remember that this is a different pregnancy.
Have faith that you will survive. Seek support. Know that there will be good days and challenging ones, but the experience you have had is threaded into your very being. Learn and explore what meaningful things can be done now –- integrating the baby’s life or memory into your heart and future. Most importantly, you and your partner must trust that you can and will move forward, smile, laugh, forgive, and find light and hope again.
Liza Cooper is a Licensed Masters level Social Worker. She is the Director of Family-Centered Care and Family Engagement at the March of Dimes Foundation and created the March of Dimes NICU Family Support program, currently in more than 100 hospitals across the nation.
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Posted by James SooHoo | Comments: (15) | Permalink
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IMPORTANT DAY IN THE FIGHT AGAINST PREMATURITY
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Feb 08, 2012 08:00pm (EST)
Hey everyone,
I just wanted you to all know first that earlier today, U.S. Department of Health and Human Services Secretary Kathleen Sebelius announced the launch of Strong Start, a multi-faceted perinatal health campaign that includes a $40 million grant to prevent premature birth.
This public-private partnership will expand “Healthy Babies are Worth the Wait™” -- the March of Dimes public awareness campaign to let women and health care providers know that if a pregnancy is healthy, it is best to wait for labor to begin on its own, rather than scheduling an induction of labor or a cesarean section. The March of Dimes campaign includes television, online and print public service advertising, as well as patient education materials. Through Strong Start, these will be co-branded with the U.S. Department of Health and Human Services and the American Congress of Obstetricians and Gynecologists and distributed more widely. The March of Dimes also is working with hospitals to implement best practices that discourage early elective deliveries before at least 39 completed weeks of gestation.
very best,
James
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Posted by James SooHoo | Comments: (5) | Permalink
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ADVOCATING FOR OUR PREEMIES!
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Nov 16, 2011 06:54pm (EST)
 In honor of World Prematurity Day (November 17th) choose the Advocacy Road that is right for you...
Urge Your Members of Congress to Support the PREEMIE Reauthorization Act (S. 1440/ H.R. 2679)
Every year, 13 million infants are born too soon worldwide, including more than a half a million babies in the United States. November 17th is World Prematurity Day -- help reduce premature birth by calling your Members of Congress and urging them to cosponsor the PREEMIE Reauthorization Act of 2011 (S. 1440/ H.R. 2679).
In 2006, Congress passed the PREEMIE Act (P.L. 109-450), which expanded research and developed a public-private agenda aimed at reducing preterm labor and delivery. Since passage, the U.S. has seen a decline in preterm birth for three years in a row. The PREEMIE Act needs to be reauthorized in order to continue the important work that is under way. If enacted, the PREEMIE Reauthorization Act (S. 1440/ H.R. 2679) will enhance research, education and intervention activities aimed at improving pregnancy outcomes. Show your support for World Prematurity Day by calling your Members of Congress now and urging them to cosponsor the PREEMIE Reauthorization Act of 2011 (S. 1440/ H.R. 2679).
Click Here to Take Action!
Like the World Prematurity Facebook Page
Learn more about the March of Dimes Advocacy Efforts
Share your story through a short story or blog
Guest author Beth, NICUMomof1, shares her story and reminds us all how important our advocacy efforts are!
Advocating for your child is crucial for their growth and success. This is very true for the premature babies who were born too soon. Despite the research, there is no known cause for preterm labor and delivery in half of premature deliveries. I am one of those mothers.
My story began in December 2009 when I was just over 7 months pregnant and I found out I was pregnant with my daughter 3 months and 1 week after my dad passed away unexpectedly I started feeling bad and having pains in my back which I had throughout my pregnancy. My doctors’ office told me to lay on my side and drink plenty of water and looking back realized I should have insisted I be seen or gone to the ER. The pain went away and I resumed normal activities on December 30th. When I called the doctors’ office again, they insisted I came in. Upon examination, the doctor realized I was already 5 cm dilated and was told to go immediately the hospital. The Magnesium sulfate stopped my contractions nad I was sent home on complete bed rest on New Years Day. The morning of January 4th the pains returned and we went to the hospital at 3:27 am and Madeline Elizabeth was born at 5:13 at 33 weeks and 1 day gestation. She was a “large” 5 lb 5 oz 19 inch long preemie. That is how her story begins.
Today Maddie is 22 months old and achieving her milestones at a normal rate even when her age is adjusted. Her only delays have been with speech and language and beginning to walk. I have had to repeatedly fight for my child’s health needs in terms of receiving the Synegis shots for RSV as an infant to fighting for the insurance company to pay for her nebulizer for her Reactive Airway Disease. My daughter deserves the best and I will fight for what she needs.
Share how you will be honoring World Prematurity Day!
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Posted by Akeelah's Mommy | Comments: (5) | Permalink
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BECOMING MORE THAN JUST A SHARE *MEMBER*!
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Jun 22, 2011 05:02pm (EST)
My life became intertwined with the March of Dimes 7 ½ years ago when my daughter was born at 25 weeks. I didn’t know anyone that had been through a premature birth and I felt completely alone. We managed to make our way through the NICU on our own but I always thought “There has to be a better way!”
When Kimberly turned 1, I happened across ShareYourStory.org and it felt like I found a home. I found a place where people knew my “language” and my questions were not only answered, but answered in the most positive, supportive ways. I went on to have another baby and Share was there for me more than ever. The people on this site kept me sane throughout a stressful pregnancy and I also found it healed my heart to help other people struggling with the same things.
I’ve never met a parent who has dealt with a premature birth or a birth defect that didn’t want to find a way to help out other families in their position. And Share gives you the perfect way to do that.
For those of you who are unaware, Share is completely volunteer run. We have a wonderful group of people who help us make sure that everyone who turns to Share gets the support they are seeking. Without this amazing team of people, Share would not be the wonderful site that it is. And we are always looking for even more volunteers who are dedicated to helping others navigate their “new normal”. The time commitment is not big and it mostly consists of responding to people’s posts and making sure we find the right people to help them out.
So if you have interest in becoming part of ShareYourStory.org, please let us know – we have positions that need to be filled and we’d love to have your help! You can contact me at Jackie_g@shareyourstory.org and I’ll give you more detail!
Thanks for helping Share become such a wonderful place,
Jackie
And here is a picture of our Leadership Committee from ShareUnion 2010!
L to R: James, Stacy, Katie, Lauren, Julie, Jackie, Jessica, Tracy
(missing from the photo are Ellen and Laura  )
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Posted by Jackie G | Comments: (8) | Permalink
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PREEMIE CHAT TOMORROW
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Mar 07, 2011 09:47pm (EST)
Hi everyone,
Beverly Robertson, the National Director of the Pregnancy & Newborn Health Education Center here at the March of Dimes is hosting a #preemiechat on Twitter on March 8th at 8pm EST.
In order to participate, all you need to do is join Twitter, put #preemiechat in the search field and follow along. Make sure to use the hashtag in your tweets so everybody can see them.
best,
james
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Posted by James SooHoo | Comments: (0) | Permalink
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