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WELCOME, GUEST |
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(1 member)
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niylnnrae @a…6 |
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A SHARED ROAD MAP
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Oct 22, 2010 02:19am (EST)
Share is a lifeline for so many, myself included. It’s a place where we’ve blogged open up our hearts and been met with understanding; a place we’ve made close friends. And that’s just the tip of the iceberg!
While most of us know how to find the blogs, did you know Share also has short stories, a café, instant messaging and March for Babies info? Yep, I know! It just keeps getting cooler.
Hang on to your hat folks! It’s your Share Your Story Road Map, with your very own dork guide... Lauren. If things still leave you scratchin’ your head leave your question in the comments and I’ll be sure to get it answered for ya.
Oh the places you can go...
No no no, we don’t host elder water aerobics in there. It’s the anything everything place on Share. A place to introduce yourself, a place to share recipes, get tech hints, and drum roll please... the Café! What is the Café you ask, um just a totally rockin’ place to hang out and laugh together about all things random.
This place most of us know well. It’s the always updated place where all the blogs and short stories are kept. Did ya know if you have a fav blog you can subscribe to it. Yep ya sure can! Right next to the author’s name it says “Subscribe” hit that button and you’ll find different ways to be kept in the loop when the blog is updated. Unfortunately there’s no button to poke someone who hasn’t updated in a long time to get on it. I know, we’ll have to work on that. 
Aws jeah, the Parent to Parent, or P2P for short. Here ya got the gold mine of places to post for specific answers on feeding, medical conditions, cool spots to chat and the place to put post things when you’ve got no stinkin’ idea where it should go.
Some P2P highlights...
Preggo and Faaaaaaaaabulous: A thread for expectin’ mommies to hang and celebrate each week. (Found in the Pregnant? On Bed Rest, Trying Again? Folder)
Crazy with Kids: The title kinda says it all. A uber fun thread for all things kid related. Got a funny kid story- this is the place to Share it! (Found in the Day to Day Coping Folder).
Living a New Normal: Living with our little ones in our hearts is a rollercoaster of emotions. Chat with other mommies and get through the days together. (Found in the Families Who Have Lost a Baby folder).
This spot really gets hoppin’ as we gear up for ShareUnion and March for Babies season. It’s also got a spot to post in your state’s thread to find other parents or events in your neighborhood. I know, who knew!?
Instant Messaging
No, it’s not a subliminal message to go shop at Target... it means there’s a message waiting for you! Look over on your left.See Who’s Online... click one of their names.
Voila! See that box, that’s for instant messaging folks. The person you want to chat with isn’t online? No worries! Just click anyone’s name. When the box pops up you can change who it’s going to. Now go answer the instant message that’s been waiting there for you since July! No seriously, that’s happened to people. 
Got Questions?
Post 'em in the comment box and I'll be sure to get to 'em!
Happy Sharing!
Lauren
Common Headaches... Fixed
Spell Check
There are two ways to spell check your blogs. The first is you write your blog and post it. At the bottom of your post it says "edit". Click "edit". At the bottom it will give you the choice to "Check Spelling".
The second is when your write and misspell something sometimes depending on computer and browser a little red line will be under the word. Right click the word. A list of options will display- choose the one you want and Voila!
That Dang Too Big Attachment Made My Blog Disappear!
Never fear... it's not gone gone. When you get that annoying message that says your attachment was too big do not click the "ok" box. It's not ok! Click the "back" button on your browser. Your blog is still there safe and sound. But you do have to choose another smaller picture to upload in the place of the big one. Or you can copy your blog and paste it in a new window. I know... it's a bummer, but at least the whole blog isn't lost!
My Blog is One Big Paragraph!
Your blog look like one big huge paragraph making it hard to read? No worries. When you're typing just be sure to hit the return key twice to make a space between your paragraphs. Wanna be extra fancy... type hr with < > around it. It will make a fancy bar like this....
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Posted by Akeelah's Mommy | Comments: (11) | Permalink
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ANOTHER SHAREUNION HAS COME AND GONE
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Oct 07, 2010 04:37pm (EST)
So ShareUnion 2010 is over.  I think any of us who were there were sad to see the weekend end.
I know that it can be intimidating for someone to make that leap of faith and fly across the country to meet people they only know online. I know that at some point, you'll think “this is crazy!”, but I think anyone who has been to one can tell you that it is totally worth it. Here are some of the reasons why:
You won't feel like you're among strangers – it's more like catching up with old friends who you haven't seen in a while.
You get to actually give those hugs we always send out virtually.
You can talk about your hardships and know that you won't be judged... and better yet, you know you'll be understood.
You will get to see everyone's true personalities – and hear their accents! It's always fun to watch Tracy and Jessica try to translate for each other, from Southern Belle to hardcore New Yorker, it's hysterical!
You'll laugh one minute, cry the next, and two seconds later you'll be laughing again.
We'll share what we do to honor our kids, how to keep their memories alive, how to deal with our struggles, and how we can make Share an even better, more inviting place for all.
I can't believe that it will be another year until I get to see you all again. And I hope that those of you who couldn't make it this year start making plans to be at ShareUnion 2011. It's pretty much guaranteed to be one of the best weekends of your life!
Hugs to all my new friends, my old friends, and those I'm still waiting to meet,
Jackie
P.S. If you'd like to comment on your favorite memory of this years SU or why someone should consider coming next year, please do!
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Posted by Jackie G | Comments: (22) | Permalink
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SHAREUNION 2010....
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Jul 13, 2010 02:23pm (EST)
I can't believe that Shareunion 2010 is right around the corner!! 79 days to be exact!!! 
Some of you may be wondering what Shareunion is... Trust me, I've been in your shoes and even thought it was a "virtual" event that was created for the Share site only, but it's not!!
It's a time when you can see the face and hear the voice that match the words that you found such comfort in. It's a time when you can give huge hugs to those who have made you feel like you were "normal" after such an abnormal event in life. It's a time when you are surrounded by others who just "know"!
You will laugh harder than you ever thought possible, and you will cry with those who will cry with you. We will celebrate the children that we have with us and those that we hold in our hearts! We will also learn about amazing volunteer opportunities that are available to us so that we can help March of Dimes as well as other families!!
Check out the Get Involved section for more information about Shareunion 2010!! Ask questions, leave comments, and get excited about coming to Atlanta in October!!
http://www.shareyourstory.org/webx/.ef722c1
I hope to see you there!!
~ Tracy 
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Posted by Angel Love | Comments: (6) | Permalink
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HAPPY NEW YEAR AGAIN!!
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Jan 02, 2010 03:31am (EST)
It's New Year's Day 2010 and people all over the world are gathering together to celebrate the days to come with family and friends. Many of you have participated in these celebrations as well. Some have looked around the room at their children's faces and smiled as they think of all the challenges that they've faced and beaten. Some look at their children and wonder if there will ever be a day when they don't have to fight quite so hard. Some sat in a NICU today watching and listening as the monitors keep track of every movement of their child, and unfortunately some just dreamed of what might have been because their children are no longer with them here on earth.
I bring in 2010 with two different categories....I've smiled at my beautiful daughter and thought of all the challenges that she's beaten, but I've also dreamed of what it would be like to have both of their faces smiling back at me.
I'm reminded with these "what ifs" of how many families were also feeling these same feelings and how many questions still don't have answers. 2010 will start up a new March for Babies walk season for most of us. Whether your walk is in the spring or in the fall, it's never too early to start thinking of ideas for fundraisers and never too early to get started with those fundraisers!! I hope that each of you will think of the children in your life, both those who arrived too soon and those who were born full term and healthy and raise money to thank the March of Dimes for all that they've done to give each child a chance and all that they're doing to give answers for those who may need them in the future.
To learn more about how to start a fundraising team log on to www.marchofdimes.com and follow the prompts, or you can click on the Get Involved section of Share for more information! Let's make 2010 the best yet for March of Dimes March for Babies fundraising!!
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Posted by Angel Love | Comments: (6) | Permalink
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ROCK FOR BABIES
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Nov 17, 2009 11:50pm (EST)
 In 2001, I was happily expecting my firstborn child. My son. I was healthy, I didn't smoke, I exercised...I was doing everything by the book. Even so, Phillip arrived 15 weeks too soon, and was taken immediately to the Neonatal Intensive Care Unit. He was ventilated, and numerous medications were given to help assist him in the biggest fight he'd ever have - the fight for his life.
Phillip lost that fight, as so many premature babies do. I am thankful, though, for the March of Dimes and all they did to give my son a fighting chance. It was the March of Dimes that helped equip the NICU where Leighton spent her first 35 days of life. It was the March of Dimes that funded the research that discovered the Progesterone shot, that I was given in my third (and scariest) pregnancy. It was the March of Dimes that helped so many of my friends' children survive. Children that I have grown to love as if they were my own.
This Friday, November 20, the March of Dimes (along with Farmers Insurance) is hosting the first ever Rock for Babies. It is a rock concert, and it will feature Five for Fighting. The concert is in Kansas City, and proceeds will go to support the local NICU Family Support Program. I volunteer in this NICU. My son died in this NICU. This is the NICU I watch provide so much support to parents in need. It is a NICU I am extremely proud to be a volunteer in.
Even if you don't live in the Kansas City area and can't make it to the concert, you can still be a part of this event! There are a ton of fabulous prizes (can you say BMW???), and your donation gets you signed up to win! Please, take a moment and check out the website. Rock for Babies You have a pretty good chance of winning a prize - just by making a donation...so please, take a second and do that as well.
We have all had babies in the NICU, and know how important the support we received was to us in that most difficult of times. We have the March of Dimes to thank for that, too. I will be there Friday, in support of the March of Dimes and the NICU Family Support Program. What better way to support such a worthy cause...and maybe in the process, allow a new mother to rock her baby to sleep at home - not in the NICU.
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Posted by weerock | Comments: (3) | Permalink
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SHARE UNION 2009
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Oct 15, 2009 04:29am (EST)
What an incredible, fun-filled, emotional weekend! I must have to say that it was by far one of my favorite SU! Atlanta, I hope you’re ready for us!!!
What made Share Union so special?
• Having the best roommate ever--Carissa…though we did have a slumber party with Kate the last night.
• Sleeping in my own bed…by myself with no snoring around me.
• Watching and making Parsons laugh and laugh until she peed in her pants.
• Watching Jackie G laugh until she started crying.
• Being served McD’s breakfast in bed by Kelly Parsons and Kate. Yummers!!!
• Paying for internet services so that Carissa and I could Bejeweled Blitz on facebook. She kicked it in gear…400K+. Impressive!
• Blowing drying my hair with the cord only 2 feet long…ahem, Carissa had to show me that the cord extends out farther. (Do slant eyes have blond moments??? LOL)
• Doing the “Captain” and not falling on my bum-bum during a photo op. LOL
• Being pushed in a Target shopping cart to CVS by Kelly Ponsler.
• Seeing Dr. Delicious Berns in person Friday night…and after a few drinks, telling him that I like him a little rounder…”there’s more of you to love”. Though he looks great still!!! Yikes!
• Hearing Judy Gooding use some choice words. Priceless!!!
• Finding mini Chambord and Malibu bottles at the liquor store down the block …they were so cute!
• “Nacho bill”
• Experiencing the Remembrance Ceremony…after 4 RC, it still affects me like no other…best one ever!
• Hanging in the hotel lobby with my polka dotted pj bottoms and I “heart” katestclair shirt.
• Collecting 84 preemie onesies for the onesie drive for our local NICU in Houston. I can’t thank you all enough!
• Getting to give input to the new Share format. Thank you, Michelle, for letting us voice our needs and wants.
• Hugging all my old and new friends…hope I didn’t scare anyone off…I’m a hugger.
• Being in the presence of people who understands me and understands my passion.
With the ending of Share Union 2009 comes the ending to my term on the Leadership Council as chair of the Special Projects Committee. It’s been a great 2 years filled with all sorts of awesome memories and moments. But with everything, there comes an end. It’s been a great honor to bring you games, activities, quizzes and parties…but mostly, lots of laughs and fun times throughout Share. I’ve had an awesome committee group of ladies to work with this last year, and I’m sure they will continue on the tradition of bringing you fun and more fun because being silly and having some R & R can be healing and energizing. Thank you again for this honor and for helping me to heal as well. Though it’s the end of my term, it’s not the end of my time on Share. I’ll be here lurking around and keeping tabs on y’all!
Until me meet again…
XOXO
~Jaclyn~
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Posted by LilyGrace'sMom | Comments: (10) | Permalink
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TEAM SHARE!
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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
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Posted by James SooHoo | Comments: (9) | Permalink
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LOYALTY AND FRIENDSHIP
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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
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Posted by katestclair | Comments: (9) | Permalink
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MILESTONES
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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
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Posted by James SooHoo | Comments: (11) | Permalink
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Can there be a more helpless feeling than watching your little one struggle for life? I think not. And I can’t help but think of the trail of helplessness that is left in our child’s wake. After all, we’re all someone’s child. As we feel helpless watching out little ones, our parents feel helpless watching us. Friends and family with all the best intentions often stand at our side unsure of what to do, how to help. 
