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TEAM SHARE!

Sep 24, 2009 06:52pm (EST)

There is a lot of talk out there about community building…and whenever I hear that term now, I don’t think of a small geographic community or section of a city. I think of you, all the people here on ShareYourStory, and the community that you have built and that you keep building!

March of Dimes has hit some tough times this year and I know you’ve heard about that in messages from our organization’s president and from the Share Chair, Kate. Maybe you are getting other messages, too, from your chapter or through our direct mail program. It’s all because we are working so hard to fill the gaps in this year’s fundraising and to protect the programs that are so important to us and the people we serve.

One of the most important programs is ShareYourStory…important to me because I have the honor of being the senior staff person at the March of Dimes responsible for it…but more important because ShareYourStory meets so many needs. And most important because you have built this community from the ground up just to meet those needs.

And you are now all stepping in to help the March of Dimes keep this community going, even in the hardest times. I am so impressed with the new Team Share project – how it’s organized and how it’s going – it represents the fantastic way Share itself operates!

In it’s first week, Team Share raised $750 – and you’ve just begun. The momentum is building and I know you’ll reach your goal of $30,000 to honor the 30,000 members on the site. Let’s keep the excitement going and keep the funds growing.

Please join Team Share…and then come back to Share and tell everyone why you gave!

Thanks for helping us keep this community thriving!

Scott Berns, Senior Vice President of Chapter Programs

Posted by James SooHoo | Comments: (9) | Permalink

LOYALTY AND FRIENDSHIP

Sep 18, 2009 10:46pm (EST)

Three years ago, almost to the day, I found this insert in the plastic NICU welcoming bag that our hospital passed out to all new families. I took this insert and logged onto this site via the computer next to my child’s isolette. Honestly, I read through the other stories, the comments that others left for people, and viewed the pictures of everyone’s kids. I wanted to make certain that Share was indeed a legit on- line support group and I somewhat became addicted. Although no one knew I was ‘around’, I found myself needing or longing to check in and find updates on certain Share kiddos and families, people I really did not know. It took me a couple of weeks to get up the courage to share my story with hundreds of other moms and dads. Once I told my story and was so warmly greeted, I couldn’t believe it took me so long to do so. I started feeling the wounds of my child’s situation heal a little bit, I started to view the while scenario differently. I began to take each day hour by hour. Share really was “my support group” through 147 days in the NICU, through 3 surgeries, through an experimental drug treatment, through the good days and the bad, through my growing knowledge of what my child was diagnosed with, through the ups and downs in my marriage, through some real life friendships that ended up crumbling, through the last 2 ½ years at home, through many specialist visits, through many therapies, through a couple of re-hospitalizations, through achieved milestones that we were told would never happen, and through my naivety of what really does go on in life vanishing. I met many, many moms and dads. We had an immediate bond despite our very real differences. Regardless of our color, our religion, our socioeconomic statuses, our morals and values, and regardless of our family background; we were all connected. It didn’t matter what our specific stories were, we all came here for the same reasons… we were in pain, we needed the bonds and support of people that understood, we needed to share our stories to validate that it actually happened, we wanted to be support of future moms and dads that would log onto Share while going through what we were or had gone through, and most importantly we wanted to end the cycle of moms and dads having to go through what we had been through. It really is amazing the loyalty, the love, the sincere gratitude that I feel for the members on Share. So speak to how important this Share family has become, I vividly remember when the surgeon came out of the operating room to inform us that Katie’s central line had been surgically placed, before even laying eyes on my daughter… I logged onto the nearest computer while waiting for the nurse’s to clean her up… to inform my Share family of the success. I felt like I needed to inform you guys even before my ‘real life’ friends. It’s an odd connection, I tell you. Last year I attended my first Share Union. I was very nervous. I was nervous that people wouldn’t know who I was, that no one would like me, that everyone would have three eyeballs or six legs, etc. I’m telling you right now that finally meeting these men and women that I had received such huge support from was nothing less than amazing. Again, the connection we all had surpassed everything else. Some moms and dads were parents of angels, some were parents of very healthy yet prematurely born children, some were parents of premature children that still had ongoing struggles, and some were parents of children that were born full term yet had serious birth defects. Without Share, we may not have become friends in the real life and that would have been fine… in my opinion, very sad but fine. Like I said, everyone on Share is very different but one thing will always remain the same and for that reason, I have found unconditional love, loyalty, and friendships that will never ever end. I give thanks daily for the strength to share my story three years ago, for taking that risk because without doing so I would not be the person that I am today. I hope that you too will have the courage to share your story with all of us as a way of healing, as a way of educating, as a way of remembering. I hope to one day meet each of you in person because you have made a huge impact on my life (perhaps at Share Union in DC??!!!).

Kelly Ponsler, Katelyn'sMom

Posted by katestclair | Comments: (9) | Permalink

MILESTONES

Aug 05, 2009 04:08pm (EST)

Well, I am hitting a bunch of life’s big milestones this year with both my kids graduating, Nick from university and Ethan from high school; my 25th anniversary, which is really cool to celebrate….and my 50th birthday, which I am trying really hard to look at as really cool to celebrate!

But the overriding milestone of the moment – and probably the year – is my preemie, my baby, my Ethan finishing high school, starting college, turning 18. It’s all made me think a lot lately (maybe even obsess) on his rough beginning…how hard it was to get him into this world.

Ethan’s birth almost 18 years is like so many of yours…early, frightening, sad, chaotic. He was born in the wrong place at the wrong time. We had just moved to a new city, I didn’t really have an ob, hadn’t done my Lamaze refresher, hadn’t even toured the hospital I had chosen. In fact, I went to meet my new ob for the first time to have my 34 week check-up and she sent me straight home to bed….to no avail as Ethan was born early the next morning.

What stands out now are the traumatic parts …driving to the hospital we picked out because it was closest and because it was a community hospital (bad decision, should have known better)…roiling in pain through the whole labor because my body and mind – and spirit – where just not ready…being pissed as hell at the nurses who kept pushing Demerol and then gave it to me anyway after I said no…relief when he finally pushed his way out…followed quickly by a mounting, unsupressable fear as my ob gradually shifted from her business of delivering the placenta and stitching me up to calmly saying, “I’d like to hear the baby breathing a little more steady, sounds a little rough to me” to throwing aside her work and yelling for “real doctors.” Which were not to be found because I had chosen a hospital that was ill-prepared for me…no nicu, no neonatologist, no surfactant, just nurses giving me an extra boost of drugs because I had been “such a good girl” and sending Tim home, with “get some rest and we’ll call you can come visit.”

I can acutely recall how the fear I felt on awakening three hours later brought that acidic vomit sensation in my throat. I knew Ethan was very, very sick and when the nurses refused to take me to see him, I was certain he had died. They only took me down the hall to look in on the drama that surrounded him to convince me that, in fact, he hadn’t. I could look through a tiny window in a door (which I had to stand up to see)…and I couldn’t see him, only what seemed to me to be frantic efforts on the part of 6 people around the bed. “Which one’s the neonatologist?” I asked. “Oh we don’t have one of those,” she replied, “but don’t worry, he’ll be fine…he’s over 5 pounds.”

Finely I kicked into action since it was clear I knew more than she did…at 6am I was on the phone to people I knew and trusted at the March of Dimes. An hour later a neonatologist sent from another hospital NICU was in my room, having seen and stabilized Ethan, gently talking me through Ethan’s chances (grim, at this point, given that he hadn’t been treated immediately) explaining to me why, how and where Ethan was being transferred. And bringing Ethan in his transport equipment into my room so I could at least see him since I couldn’t go, too.

The next hour was a blur of panic, drugs wearing off, Tim arriving to help figure things out (cause I wasn’t staying there). The hospital refused to transfer me, so I checked out “against doctor’s orders” while the nurses yelled at me (gone was the good little girl), signed my waivers of responsibility and other documents (which said Ethan was a baby girl, amusing since like all baby boys and especially many preemie boys it was VERY clear what sex this baby was). We got in the car and Tim drove me across town to Ethan’s hospital where I was welcomed to through the emergency room like the hero I was for coming to be with my baby.

And there we were…for a much shorter stay that many of you, and for the most part calmer. The first two days, though, were very difficult – and the first night worst of all. I still don’t understand all that went wrong for Ethan and what happened that sent things spiraling before he got the care he needed, but his biggest problem was severe and acute RDS and a precipitous weight loss.

So, we were in the NICU, and even though I worked at the March of Dimes, the nurses were supportive and nice, the neo knew what to do, still I was confused, scared and WAY out of my element. And even though we were only in the NICU for about 2 weeks, I had many experiences that could have been softened, could have been easier, where we could have had more help coping. My experience makes me realize how other “short-stay” NICU families feel – and how much they need support in the NICU and when they get home.

o When Ethan was transferred, I knew so little about where he was going – how wonderful it would have been to have reassurance about the next scene

o My intro to the NICU was a nurse talking about how big and well he looked compared to the babies nearby who were really sick. I was afraid he wouldn’t get the attention I thought he needed.

o Leaving the hospital without my baby was one of the hardest things I’ve ever done in my life…I knew that Ethan would be home sooner than other babies but I didn’t know when and I felt helpless.

o There was no formal information for me and no one really told me anything informally either – so how was I to know that I wasn’t supposed to drive my milk to the hospital as soon as I pumped (even at 2 and 4am)? It took the night staff 4 days to realize why I was visiting at such odd hours.

o I was so, so afraid for the other families and babies, but I didn’t know if I could help or talk to them…or if I even wanted to. A March of Dimes specialist would have known how to reassure me and connect me to other families.

o Taking Ethan home was almost as traumatic as leaving the hospital without him! He was literally unhooked from all the monitors and put right into the car seat. It was all very exciting until we actually got home – and then we were alone and nervous about making a mistake.

o And we did make a mistake! A big one! Ethan slept through the whole first night (7 hours straight). How was I to know that a baby who weighed 4 lbs needs to awaken and fed in the night? So, we were back in the hospital a day later because he’d lost ounces instead of gaining them.

o Then, back home and alone…and we stayed alone for 10 weeks – and even over the next six months as we learned how to manage his very slow weight gain and his asthma. How I would have loved Share then! (of course there was no internet at all --

)

In my job at the March of Dimes now I get to be involved in helping parents in the NICU get the support and the information they need. And right now, my team is developing a “module” – a set of materials and activities – just for families who are in the hospital for a shorter time, about 2 weeks. Because they are in the NICU too, and their time is also full of chaos and confusion. In our project sites, short stay families they see others getting support, but aren’t always included. And we don’t always know the best way to support them.

My thanks to those of you who have been giving input to Lori Gunther as she leads the development of this module. Anyone who had a short NICU stay and wants to share ideas for supporting families in the NICU or here on Share, just post a comment and let us know – we’ll make sure you get included.

How lucky was I to work at the March of Dimes? Would I have an Ethan turning 18 this year if I worked anywhere else? Or if I had been less empowered, less insistent? I honestly don’t think so. I think working for the March of Dimes gave me access to information and made me feel like I could take some control. That’s what I think our NICU Family Support Specialists do in our hospital sites – and I hope that’s what Share Your Story does for you.

Judi Gooding, Director of NICU Initiatives and Chapter Program Support

Ethan 2 weeks

Ethan today

Posted by James SooHoo | Comments: (11) | Permalink

COMING SOON--SHAREUNION 2009!

Jul 16, 2009 03:06pm (EST)

In 2006, when I found Share, I was looking for new ideas for our March of Dimes teams here in my area. After many visits to the site as a "lurker", I found that Share was much more than just a place to post fundraising ideas, but a place where others were sharing their heart within their own stories of daily living. I soon registered as a member so that I could ask questions of others and hopefully gain information for myself and my situation.

One day, while visiting the site, I found the Cafe' thread in the Community Center. The conversation there was light and fun and always included "drinks". One day the topic of conversation was about something called "Shareunion". I followed along and participated with the laughter as I'd always done, but thought that like the many drinks, naps, and cabana boys that "Shareunion" was just another virtual event! Several weeks later, there were pictures posted and low and behold---Shareunion was REAL!!

I decided that I was not going to be miss another Shareunion, and was excited to be able to participate in Shareunion 2008 in Houston, TX. Was I nervous to travel alone to a new city to meet people that I'd only met online??----ABSOLUTELY! Would I recommend it to other Share members after doing it myself? --ABSOLUTELY!! I found that everyone that I met there was just as I thought they'd be....caring, compassionate, and FULL of laughter!!

Shareunion was a time when I knew that everyone in the room understood completely what I'd been through and continue to go through in life concerning the birth of my daughters and, soon after, the death of Taylor. I was surrounded by others who understood why March of Dimes and their work is so important. They'd lived through situations that had pushed them to their limits just like I had, and wanted to make sure that others never had to have the same experience. In that room, my tears were understood without a word spoken and hugs were offered with understanding my "complete strangers". Was Shareunion worth it? ---ABSOLUTELY!!

Shareunion 2009 is planned for October 10th and 11th in Washington, D.C. I plan to make the trip to see my friends face to face once again. I hope that you will be able to join us! Look for more information in the coming weeks on Shareunion 2009, and I will REALLY see of you there!!

Posted by Angel Love | Comments: (8) | Permalink

WELCOMING BABY ON OUR TIME

Jul 01, 2009 06:26pm (EST)

For those of you I haven’t had the pleasure of meeting, please let me introduce myself. I’m Ivette Morello and I work in the Education and Health Promotion department at the March of Dimes National Office. I’m mainly responsible for developing and editing the pregnancy and baby health articles on our English language Web site. I also contribute to our blog, News Moms Need. One of the neat things about my job, aside from working for a great organization, is that it allows me to combine my two favorite pastimes – writing and learning.

Although I’m new to many of you here on Share, I’ve been following your courageous stories for quite some time. Each one of you has so graciously opened a door into your life and allowed us to share in your joys and hardships. I think it’s only fitting that I do the same.

My husband and I have been married for almost three years – a short, but albeit wonderful amount of time. As a young couple starting out in life, we’re trying to enjoy our time together as much as we can. Of course, being a newlywed couple also means that we’re subjected to the dreaded “so, when are you starting a family” question.

I somewhat expect our families to be curious about the addition of a new member to the family clan. But what’s funny is when the question keeps popping up even after I’ve already answered it… almost as if my answer wasn’t good enough the first time. Did anyone else experience this? Maybe it’s just me.

It’s not that we don’t want a baby someday, it’s just that “someday” isn’t today. My husband and I know about eating healthy, avoiding bad habits, etc., before getting pregnant (thankfully, my job has helped me learn about these and other pregnancy health issues). And I love sharing in the joy of some of our closest friends who welcome their first born babies into the world. But for us, I think there’s nothing wrong with waiting a bit to get a little situated before having our baby. When my husband and I have our baby, we don’t want it to be because we felt pressured or because all of our friends were having babies. We want it to be because it was on our time.

Even though I’m not a parent yet, I can certainly see that it’s no easy role. It’s not a job that ends when junior turns 18 or 21 – it’s a lifetime commitment. I’m fortunate enough to still have my parents here on earth. While I’ve been out of the house for years and live a few states away, my parents are still there to “parent” me. They offer me advice and guidance when I need it, and show me that even though I’m a married woman and out on my own, they still love and support me, just like they did when I was 5. And that’s what I want to offer my baby someday.

But until “someday” comes, we’re making do with the newest addition to our little clan. A couple months ago, we adopted Lola, our new Boston terrier puppy. And someday, when we welcome our first baby to our home, Lola will be there and will undoubtedly become our new baby’s best four-legged pal.

Ivette2

Posted by weerock | Comments: (4) | Permalink

"STAND BY ME"

Jun 15, 2009 12:16pm (EST)

Last night I had the honor to attend my step-sons graduation. It was a beautiful event, made even more beautiful by the 240 graduating seniors. It was so amazing to see the hope and dreams on their faces. You could almost see their brains working, some planning the nights festivities, some planning their college years, and some like me at that time already planning their families. The theme last night was Stand by Me...can I say that when they started to sing that song I thought of you all, Share really never is far from my mind but last night as the Senior choir sang that song I got goose bumps thinking of you all.

When I was in High School I was always on the go, always planning something, always wanting to be where all my friends were. I must have driven my father nuts. I can say nothing much changed as I moved past high school and again not much changed when I moved into the working world. I liked to be where things were going on, I had loads of friends and could always find something to do. Even after having my daughter Alex I didn't really lose steam, I just took her everywhere I went, she was a little social butterfly. My friends were having children and we were all moving on with life. On October 27th 2004 that all changed, literally overnight I suddenly felt disconnected from everyone I ever knew. Friends and family suddenly distanced themselves, wether it was intentional or not it still hurt. Over the years I've been able to sit back and re-evaluate my life, my friends, my world.

It wasn't until 2006 when I found Share that I found my "Stand by Me", through thick and thin this site is here...

If your here and reading this, then you and I have something in common, the ache in our hearts may be different but our reasons for being here are the same~our children.

Know this, I'll stand by you all no matter what, on the good days, the bad days, and the ugly days...

Sometimes just knowing that someone will Stand by you is enough to get through the day.

Warmly Kate

Posted by katestclair | Comments: (10) | Permalink

GETTING THROUGH GUILT

Jun 02, 2009 06:29pm (EST)

“Guilt is the very nerve of sorrow”– Horace Bushnell

Recently a mother told me she absolutely knew what caused the traumatic, premature birth of her baby girl. “It was,” the mom stated candidly, waiting it seemed for my judgment and confirmation, “it was because I had a Coca Cola during my pregnancy.” She had been replaying this moment over and over in her mind, wishing she could go back and have an opportunity to make a different choice.

In my near fifteen years as a social worker serving families in the perinatal field, I have heard stories from hundreds, maybe thousands of mothers who blame themselves for a birth gone awry. And whether it was the mom who said her premature twenty-four week twins were born because of an itch she had in the shower that she ignored or the mom that told me that she had insisted on putting up the Christmas decorations that year and that’s why her son came so early, all moms focus on some small detail, or set of details, that they are certain they had done that brought this painful experience upon their family.

In all likelihood, most doctors would say that none of the above things could on their own cause a baby to be born sick or born early, but even with the reassurance of their physicians, mothers feel profound guilt. So, why do so many women and mothers feel guilt because of infertility, miscarriage, pregnancy loss, the birth of a sick or premature baby?

Guilt, as Grief

First, and perhaps most important for all mothers to know, is that these painful, isolating feelings of guilt are normal. They are also incredibly common. It is one of the most acute (and unspoken) emotions of grief.

Women may think “What did I do wrong to deserve this?” or focus on how they think they have disappointed their partners, families and themselves.

When something goes contrary to what we expect – especially something we place so much importance on, like the birth of a child – we grieve. We grieve for what could have been, we grieve for what we have lost. And grief has a number of common feelings and stages including shock and denial; sorrow and depression; anger and rage; guilt and blame; and ultimately, for many – not closure, as it was once called (who can have “closure” on the loss of a child?), but instead integration or the weaving of a loss – the tenderness, the pain – into a person’s heart, into their very being, into how they live their lives and how they move forward. And so guilt comes as part of this powerful and very natural process.

A Strange Medicine

Something else happens when things go wrong, when a baby arrives too sick or too soon. We feel out of control and helpless. In a desperate effort to regain a sense of control over the world around them, people often feel guilt or self-blame. It serves 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 we give ourselves.

“It’s not your fault”

One mother I met told the story that when her baby was first hospitalized in the NICU, a nurse found her crying by her daughter’s bedside, and told her “You did not do this”. For her, this was the beginning of healing. Many mothers talk about someone who helped relieve their guilt – an obstetrician, a neonatologist, a trusted nurse, spouse, or dear friend – who reassured them “it’s not your fault”. It doesn’t usually take all the feelings of guilt away, but it is comforting when someone you respect tells you it’s not your fault. Let these important people in your life know what you need. Tell your doctor what you blame yourself for. Tell your spouse, your mother, your best friend what words would be helpful. Even those that love us don’t always know.

Guilt, When It’s Confirmed

There is a lot we do not yet know about what causes premature birth and birth defects – what risk factors cause some women to give birth early, and not others. March of Dimes dedicates itself to finding the causes and ways to prevent pre-term birth. There are things we do know about however. For example, we know that there are risks of smoking, illegal drugs, alcohol, and folic acid deficiency during pregnancy. And this information can be found in books and on the internet. So what do you do if these are the behaviors that you feel guilty for? You can share these feelings too, know that you are not alone, acknowledge these concerns to a friend, family member or healthcare provider who is trusted and compassionate. Remind yourself that no matter what happened before, you never intended for your baby to be born early or sick. And remember that what you do now, how you love, nourish and protect your baby, your children and/or future pregnancies is most critical.

Moving Through Guilt

So when does the guilt end? How does one move through this heart-breaking emotion? Healing begins with revealing this feeling – sharing it with others who understand in the NICU, with a caring therapist, in a support group, on ShareYourStory.org. Speak about it, write about it. Allow others to normalize this feeling for you, as you can normalize it for them. And then get informed – discuss with your doctor what you think caused things to go wrong to get clarification and to develop a forum to process these difficult thoughts. Rather than retracing your steps, stay present. Learn and explore what meaningful things you can do for your baby now – whether its kangaroo care, reading to your baby, keeping your child away from cigarette smoke, integrating his or her life or memory into your heart and your future. And finally, most importantly, allow yourself to move forward, to smile, to laugh, to forgive, and to find light and hope again.

Liza Gene Cooper, LMSW Director, March of Dimes NICU Family Support

Posted by weerock | Comments: (12) | Permalink

MILESTONES

May 18, 2009 12:08pm (EST)

The Middleton Kidlets will be graduating from Kindergarten in just two weeks. Caps and gowns, rehearsed songs, and video nostalgia will be relished by their parents. Punch and cookies will festively follow the program.

Six years ago, my quadruplets were born at 25 weeks. It is not possible to remove myself from that truth. While three of our children (Benjamin, Callie, and Donovan) will energetically transition into summer vacation, our Alex will not. He died inside the NICU at just 3 weeks old.

This lovely Saturday morning, Ben’s vision teacher called. She tells me late Friday evening she received a note from the school psychologist. There is need for me to attend a meeting, and give parental consent to test Benjamin. I am told this is a common requirement for children with Individualized Education Plans (IEPs).

A few months ago, Benjamin and I traveled two hours away to the school for the blind. There Ben participated in several other tests. Left on my own during testing, I peeked into a future window of how life might be like for my sweet boy. Upon receiving the evaluation a few weeks later, I learned Ben will need to use a cane after all.

Donovan read the morning announcements over the school intercom on Thursday. The word of the week was tolerance. I glowed with motherly pride that my child was able to share with other children what the word tolerance means.

Callie is always concerned about our new family member, a rescued kitten. He was in terrible shape when he came into our home. After getting antibiotics, eye ointments, and regular feedings, he is a feisty cat. Callie loves to mother him.

Six years ago, I wondered if my children would survive. I did not allow myself to dream to far into the future, and certainly not about Kindergarten graduation. How far my one pound babies have come! They read, write, and kick soccer balls. Summer used to feel like an ending to me, but now …it feels like the future spreading its wide arms.

Posted by weerock | Comments: (3) | Permalink

PRAYER, GRATITUDE AND ACTION

May 07, 2009 01:49pm (EST)

By Meghan Sheriff

When I learned that our twin boys suffered from Twin to Twin Transfusion Syndrome, my heart broke into a million pieces. It would be the first of many times it shattered over the course of 2008, the worst being on April 1st when we said goodbye to our amazing fighter, Michael, who battled on in the NICU for twenty-three heart wrenching days. Three months later, we left St. Mary’s Hospital in Richmond, VA with his identical twin, Matthew, in our arms. Like everything else last spring, it was bittersweet.

There is nothing that fills the void of losing a child. However, for me prayer, gratitude and action are the only remedies for a broken heart.

Our hospital does not have a NICU family support team in place, so I decided that needed to change. In February 2009, Baby Steps came into fruition at St. Mary’s Hospital. With a team of volunteers from our church, Shady Grove United Methodist, we began a NICU family support team, an antepartum team and helped collaborate with Bon Secours to create a prayer vigil called Blessings for Babies.

Once a month, we gather with NICU families to offer support. Activities range from scrap booking to post-natal yoga. Local businesses sponsor the events by providing refreshments and occasional talks. Weekly, our volunteers visit mothers on the antepartum unit. We bring gift bags, lend a listening ear and offer encouragement to these moms. The Blessings for Babies program will kickoff in May. We are partnering with Bon Secours to provide a forty-five minute prayer service for families of NICU and antepartum families. With these services families can congregate and pray for their children with others who understand their anxiety and worry.

Two years ago I would have never imagined I’d be where I am today. My oldest son, Charlie, was born at 40 weeks weighing nearly nine pounds. My pregnancy was “textbook.” I never dreamed that we would be blessed with twins only to learn that they suffered from a debilitating fetal distress syndrome. I would have never been able to comprehend delivering two babies weighing in at one and a half pounds each, and I could have not imagined that we would say goodbye to one of our tiny boys before we barely said hello. These are the stories of people in magazines- not ours. Only this time, we are the family in print- that is our family in the photograph.

In August, our family will welcome a fourth baby boy to this world. It is my greatest prayer that he will be healthy and full-term. I vowed to a friend the other day not to complain when my feet throb in the heat of the July sun. Now I know what true suffering is- I have been there. As I visit moms on antepartum and then walk through the hospital doors to my car, I will not complain about the long walk to the parking lot. This time, I am able to walk. I am not bedridden- I have been there. As we support families in prayer, we will lift silent prayers for our tiny angel and our amazing miracle. We know what it feels like to be in these parents’ shoes. We have been there. Nothing will change what happened to our family. Nothing fully eases the pain, but I am confident that prayer, gratitude and action bring our son closer to us and remind us that his life, though short, was extremely powerful.

Posted by katestclair | Comments: (6) | Permalink

THIS YEAR I WAS FACED WITH REVISITING MY WORST MOMENTS AS A PARENT

Apr 29, 2009 08:37pm (EST)

by Lori Gunther, Manger, NICU Family Support

This year I was faced with revisiting my worst moments as a parent. In January my son had facial reconstructive surgery to repair his birth defect. He is 6 and for the past five years we have had the blessing of moving on with our lives and moving past the difficult experiences we had as new parents with a sick newborn. Thinking back to that time has never made me feel good. I always regretted certain aspects of how I behaved. I always wished I had done some things differently. When we had to go back to the hospital and sit in the surgery wing, hand him over to strangers and wait for him to go into recovery I realized how much my husband and I have changed. I think we have grown into being parents. Ethan has taught us so much. I can say that watching, listening and learning from families who have experienced premature birth I always felt different. Ethan wasn't premature. He didn't have a life threatening diagnosis. He was simply a baby who was born looking different. Because of this somehow I felt like we deserved less support. I felt like I couldn't relate to families who had been through so much more then we had. I have a hard time telling people what Ethan was born with. I often say he was born with a hole in the center of his face. Telling people he has a cleft somehow in my mind diminished what he and we as his parents went through. I think this relates to peoples comments to us after he was born. Everyone wanted us to look on the bright side. Be happy with our baby. We should have been thankful that he wasn't near death. I never felt like I met someone who truly understood our experience. Don't get me wrong people sympathized but I have always felt alone. Over the years our pain has dulled and our perspective about our son and his birth has evolved.

In January I sat tense and scared and waited for him to be finished. He was so strong. He was sick for a while afterwards and we held him and held it together. We advocated for him and I was proud of my own strength and knowledge I have because I work for the March of Dimes. Working here has taught me how to be a great patient advocate. It has taught me how to accept and validate everyone's painful experiences. I am always proud to be Ethan's mother, regrets and all. I am always proud to work for the March of Dimes.

This past weekend our family came together and we congratulated Ethan for how far he has come. We are his army of support. On Sunday we marched beside him at March for Babies. Our team name is Ethan's Army. Ethan is proudly our team captain. During the walk he was asked countless time how premature he was. I think people just associate the March of Dimes with prematurity. Ethan proudly tells them he wasn't. A father pushed a stroller along side us and asked if Ethan was premature. I told him no he had a birth defect. He and I talked for a while. His son was born with the same birth defect as Ethan as well as a brain malformation. His compassion and understanding was amazing. As we spoke and shared stories, I felt so connected to their experience. Even though his child will have a different road to travel he understood the hardship parents who have children like Ethan have endured. It was the first time I felt validated in my own regrets and pain. His time and compassion was a true gift to my spirit.

I have to say 6 miles is a long haul in 90 degree heat with two kids and a truckload of out of shape adults. It was worth it, though, because I have been waiting 6 1/2 years to meet and connect with another family, and I have the March of Dimes to thank for making that possible. On Sunday, I wasn't just proud to work for the March of Dimes I was grateful.

2009 Ethan's Army1

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