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PRAYER, GRATITUDE AND ACTION
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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.
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Posted by katestclair | Comments: (6) | Permalink
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THIS YEAR I WAS FACED WITH REVISITING MY WORST MOMENTS AS A PARENT
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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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Posted by weerock | Comments: (8) | Permalink
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LOOK WHO'S WALKING...
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Apr 21, 2009 03:15pm (EST)
A number of celebrities have joined us or are joining us at March for Babies this year...
On Sunday, April 19th Nicole Kidman and Kelly Clarkson joined Nashville, Tennesseans at March for Babies.
You can view Nicole’s interview on “Entertainment Tonight” online, or tune in on the evening of Tuesday, April 21st and watch on TV. Ms. Kidman says she’s “absolutely honored” to be helping this very important cause.
Ms. Clarkson also gave a boost to walkers of all ages when she and her team did the entire route with umbrellas and smiles.
Jennifer Lopez is also walking this year. I am not allowed to say where...except that it might be the one near you. 
Hugh Jackman , who tweets as @RealHughJackman, has offered to give $100,000 to the charity of choice of the tweeter he feels makes the strongest, most heart-felt case. In 140 words or less that is.
Thousands of people have already sent their tweets - among them many March of Dimes supporters. Hugh’s announcing the winner on April 24, so get your tweet in now!
entertainment_tonight___nicole_kidman_promote_march_for_babies_4
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Posted by James SooHoo | Comments: (0) | Permalink
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ASK A SHARE MEMBER!
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Apr 14, 2009 12:48pm (EST)
Here it is - another highly anticipated edition of "Ask a Share Member"! This time - it's our very own Jackie Gurwin, otherwise known as Jackie G.
1. You’ve been a member of Share for a long time – what makes the site so special to you?
Share is filled with people who are not only understanding but very knowledgeable as well. When I first came to Share, I was alone. I had just spent a year dealing with the guilt and confusion that went along with having my daughter, Kimberly, at 25 weeks. I did not know anyone else who had been down the "preemie road" and I finally found a place where other people had walked in my shoes. I was welcomed immediately and found it was a great place to curb my fears and ask questions without feeling like I was being judged. But what really got me hooked was when I became pregnant with my son. I found another group of women who were all going through that terrifying 2nd pregnancy after a preemie and we learned to lean on each other. These women became true friends of mine and I can't seem to go a day without Share because I have to keep up with how they are all doing!
2. Tell us something about you that we’d be surprised to know.
I am a "Jackie of all trades" so to speak.  I am pretty handy around the house, if I do say so myself. I will do a bit of carpentary, replace sinks and faucets, minor electrical work, fix appliances (if it's not too major), there is very little that I am afraid to tackle. I basically draw the line on anything that could burn the house down or flood it. I also love to sew, do arts and crafts, and bake as well. I have a lot of those "old fashioned" woman traits, but I am very tomboyish and not afraid to get dirty either. I used to work as a quality engineer at an automotive company and the men all used to laugh at me because I would not be the least bit afraid of crawling under a car to have a look at a problem. It's always fun to show people that they might have the wrong impression about you by doing something surprising.
3. What do you do with your time when you’re not on Share?
Well, since I am a stay at home mom, my days are mostly filled with taking care of my kids. But I figure that's kind of boring and not really what you are looking for. So the things I do to unwind are arts and crafts projects and baking. They are things I can do in my own little world and they let me forget about everything else. Not that I get much "me" time with 2 young kids! We also moved into a new house about 6 months ago so I am really enjoying trying to fix it up... now if only my pocketbook would let me really dig into the home repairs! LOL
4. If you could be any superhero…who would you be and why?
Hmmm... tough question. My answer isn't one of your normal comic book heroes, but I think I would want to be like Hiro Nakamura on the show Heroes (only less nerdy!). I would love the ability to stop time, speed it up, or slow it down whenever I saw fit. There are days I want the world to slow down so we can all stop and smell the roses. My kids are growing up so fast and I feel like I need to have more time just to spoil them and enjoy watching them absorb everything around them. And then there are days where I would love to have the ability to speed through the rough patches. I think there are times we all feel like that but wouldn't it be nice to be able to do something about it?!?
Thanks, Jackie, for being such a good sport!
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Posted by weerock | Comments: (6) | Permalink
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PERSEVERANCE IS NOT A LONG RACE; IT IS MANY SHORT RACES ONE AFTER ANOTHER. ~WALTER ELLIOTT, THE SPIRITUAL LIFE
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Apr 01, 2009 02:24pm (EST)
 by Kathy Farrey, Director, National Promotions & Events
Where to start, since this is my first blog on Share, let me start by saying how much I have enjoyed meeting some of you! You are so amazing and truly inspirational. I only wish there was a Share for my parents nearly 50 years ago. As some of you know, I am a person of short stature, what you don’t know is my brother is also. My parents are both of average height so as you can imagine this must have been quite a surprise back in the early 1960’s. Back then doctors were not even sure of our diagnosis, so both my brother and I were diagnosised as the most common type of skeletal dysplasia at the time, only for my brother to be re-diagnosised when I was born, a year after my brother was born.
While I have enjoyed a wonderful and rewarding career with the March of Dimes for nearly 30 years my brother has had a much more difficult life. I have had the opportunity to meet wonderful people such as all of you on Share and I have had the privilege of learning about all the great work the March of Dimes has done and continues to do to ensure all babies are born healthy. My brother did not; he can not walk and has limited learning ability. I have had the opportunity to travel the country and see all God’s beauty, my brother did not; he is legally blind. I have had the chance to talk with many volunteers; my brother can not speak anymore, as he now has a tracheotomy and requires oxygen 24/7 (which I know many of you are all too familiar with).
While life growing up was challenged, my wonderful parents made it all appear “normal.” We traveled on vacation to The North Pole, Disneyland in FL, Land of Make Believe in NJ, Grand Ole Opry in Nashville, TN and so much more! We built snowmen in the backyard; we went swimming in pools and lake (Lake George, NY). To my parents I owe an enormous amount of gratitude and appreciation. I could never re-pay them for all they have done, all they have given up and continue to give up as they are the primary caregivers for my brother today.
In March of 2003 my brother aspirated and was hospitalized for 9 ˝ months. Due to his skeletal issues it took nearly 3 weeks to locate a doctor that would perform a tracheotomy which was needed to keep my brother alive and breathing. My parents spent every day during those 9 ˝ months in the hospital with my brother, some 2,700+ days 10 – 16 hours in a hospital room then home for 5-6 hours rest.
Long story short, our lives changed forever. My parent’s home then turned into a mini hospital room and has been for the last 6 years. My father has slept in a reclining chair next to my brother’s hospital bed (whether in a hospital or now at home) for the last 6 years. My brother is on a vent all night and a few hours during the day. The most remarkable thing is my brother’s phenomenal ability to persevere. He is the most loving, the most generous, and the most giving person you would ever meet. He loves talking (well, we read his lips so good he believes he is talking to us) and playing game shows on television. He looks forward to me stopping by on Friday nights and Sundays for dinner.
During these last several years life keeps going on, keeps you on your toes, I have had to undergo spinal surgery and my parents had to juggle caring for my brother and assisting me. My mother has been diagnosised with lung cancer and had to undergo lung surgery and chemo; thankfully she did well and is cancer free for nearly 3 years! My father suffers from emphysema but continues to persevere.
In the end I believe that is all any of us can do, persevere. My mother also told me – I cried because I had no shoes, until the day I met the man who had no feet – so I and my family persevere as all of you do. So I would like to thank you all for all that you do to support the March of Dimes. We all face challenging and difficult times now and then but I ask you all to persevere.
Kathy
Let us not be weary in well doing: for in due season we shall reap, if we faint not.
--Galatians 6:9
me Art Easter 2004-2
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Posted by Kathymaf | Comments: (7) | Permalink
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DOING IT ALL OVER AGAIN...
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Mar 22, 2009 07:24pm (EST)
I know there are many here on Share who have had one preemie experience and are so scared to try again! We were no different. It took us over 2 years to be ready to 'try' again and another 2 years before we were successful.
After Braden's early birth and 11 week NICU stay we were definitely scared to try it again. We dreamed of the perfect pregnancy! We did everything right again. I was followed so very closely by my perinatologist - we took every precaution - and yet it happened again.
I guess you could say that this time is a 'tad' easier than the last. It still absolutely sucks that Blake is in the NICU - that he has had to fight from his very first breath.
The first time - we had no clue Braden was coming early until 2 days before he did. We had no warning, no planning, no knowledge of any preemie or NICU related. We came out of it 11 weeks later different people. We felt like we had earned a medical degree for one! We also knew how very precious life was and every single tiny milestone that comes along with our babies gave us a reason to celebrate!
With Blake - we knew at 20 weeks that we were most likely headed down the same path. We were scared, but this time we had knowledge, and I most definitely think in most situations that that is power! By 24 weeks I was on hospital bedrest willing my baby boy to grow and overcome many obstacles. And by 28 weeks, I had my 1 lb. 6 oz. baby boy fighting in the NICU.
Many things are different this time around. We know all about the NICU. We know the doctors and most of the nurses. We know about the beeping alarms and what questions to ask. We know what our rights as parents are and we know how to advocate for our child. Once again knowledge is power.
One of the most amazing places I've gotten much of my knowledge from over the past 4 1/2 years has been from right here. From YOU...each and everyone has brought something into my life that I didn't have before. I have learned so much in the last few years - so much that prepared me for another battle in the NICU. This time around I (we) have the support of so many - support that has literally pulled me up when I didn't think I could stand anymore. My family and friends are AMAZED when they read through the comments on Blake's caringbridge site - they don't understand how I know so many people from all over the country. To explain to them what Share is, is tough! Because although I haven't met all of you or only spent a day or two with some of you - I call you my friends - there is no other word. I have also found some of my very best friends right here - friends I can not imagine not knowing - friends that I know will always be a part of my life.
Share gave this to me. It has made this second time around easier. It has given me a place to vent, to cry and to celebrate. I know I will continue to need Share as the months and years go on.
If you are thinking of having more children and are scared - you are not alone. If it is something that you want in your life - know that we are here for you. We hope and pray that the next time you'll be big and fat and go full term - and we will jump up and down and celebrate with you when that happens. And if it happens again - we will be here for you - Share will be your shoulder to cry on, the friend to hold your hand and celebrate every tiny milestone!!
I know that I will be forever grateful for everyone who makes this place available to all of us.
PS - Blake is now 7 weeks old and doing great. He is down to 1/4L of oxygen and is trying to master the bottle. We see an end in sight - he is amazing!
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Posted by Braden's Mommy | Comments: (7) | Permalink
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CHANGE CAN BE A GOOD THING
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Mar 19, 2009 03:00am (EST)
As you might already know, each month we host a Live Chat (web cast) on Share. Our topics are carefully selected, as are the guest speakers. With all but one exception (okay, maybe two) all the chats have taken place during the day. Yet we realize not all of you can make a mid-afternoon chat. Some are working, some are banned from internet sites at work, and some are simply too busy........all of which are okay!
In an effort to attract more members to our chat, we've decided to hold an evening chat on Thursday, March 19, 7:30 p.m. Eastern Time. Our topic will ironically be.........
Balancing Work and Home Life, with our very own Denise Rock (weerock). Please join us and bring your questions!! When Denise isn't working a 40-hour/4 day week, she's volunteering with the March of Dimes & Share, baking up some yummy food, working out, cleaning or texting her friends. How does she do it all??? Join us and find out!
Like I said, change can be a good thing...but we need your help. Please let us know if a night chat would normally work for you, even if you aren't able to attend this one. Is 7:30 p.m. Eastern Time late enough for you, or would 8:30 work better? We want to make sure everyone who is interested in the chats has the opportunity to attend them.........your feedback is important.
Shonda
kids 006
ShareUnion Houston 023
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Posted by 2 here 2 in Heaven | Comments: (5) | Permalink
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RED LIGHT, GREEN LIGHT
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Feb 23, 2009 06:36pm (EST)
 When Mickey was 4 years old and in preschool, he was having difficulties with paying attention, focusing on the teacher, participating in circle time, keeping his hands to himself, etc. This was quite problematic for me as a parent but more devastating as a teacher that her child lacked self-control and didn’t mold to the ideal of the normal student.
Billy and I conferenced with this teacher to discuss different plans to modify his behaviors. I brought to the table different behavior plans that I have used in my own classroom to share. We agreed on one and implemented that right away. In the meantime, I suggested taking Mickey to our pediatrician for assessment of ADHD. I work with ADD/ADHD students every day and know the characteristics. I know what it looks like. I know what it’s not. However, I couldn’t decipher these in my own son so I needed another fresh pair of eyes. I also knew that I needed to get to the root of his behavior and rule anything out. But what were truly ADHD tendencies and what were just 4 year old behaviors in him?
While waiting on his results from our pediatrician, we noticed that Mickey’s behavior was more appropriate and less distracting to others while on this new behavior plan. I started to analyze when and where he came out of the “mold”. I came to the conclusion that it was mostly during activities that were not as structured and not teacher directed…storing this information for future classrooms and teachers…but at the same time, thinking this to be normal behaviors for 4 year olds, right?
Then the call came with the results. Mickey did not completely fit the mold of the ADHD child. However, there were areas that were elevated and needed monitoring.
Here we are a year later…and here we are asking some of the same questions. The difference is that his teacher this year doesn’t see typical ADHD characteristics in Mickey yet he continues to struggle with following directions, keeping his hands off of objects, and having some self-control. He definitely has good days and bad days. However, Mickey loves school. He’s not frustrated with class work at all. Actually, he’s reading above where he should be. His handwriting is beautiful. He’s incredible with math computations. He’s excelling and his behavior is not hindering his educational needs. Mickey’s a sweet, kind-hearted, loving, fun child, but at the same time, I’m not delusional about his behavior at all. But, is it that he really can’t do it or is it a choice not to? However, I am beyond frustrated about it, and I’m not beyond taking him back to the pediatrician for further testing though.
In the meantime, I’ve been going through some of my resources in my classroom and reading up on ADHD and students with these diagnoses. Something that stood out to me that I wanted to share…
Melanie Johnston, our school behavioral specialist gave the best definition of ADHD in a workshop I attended…
It’s a great day when you can driving down the main strip in your city and hit every green light. You can get from point A to point B without any problems and life is good. But on any other given day, you can hit every red light, get frustrated, get mad, cuss and yell, and be late to where you’re going. For a normal person, green light days with some occasional red light days are expected. However, for the ADHD person, red light days are everyday. Something is always getting in the way of point A to point B.
ADHD children aren’t aware that they were just hit by a red light, of what they are doing, where their minds went and how to get back sometimes. How do we help them get back?
Melanie stated that “failure to communicate is the responsibility of both speaker and listener.” She repeatedly said, “This is not about you. Don’t take it personally.” She did list communications that children might have that we needed to attend to, and these have helped me to be a better parent and teacher.
• Please be patient with me. I’m interested in what you have to say.
• Please help me pay attention to what you say. It’s hard for me to keep my attention.
• Please make sure I’m listening. I don’t always know when I’m not.
• Don’t get angry with me. It’s already hard for me to attend and understand. The extra pressure will only distract me.
• Sometimes long complex sentences confuse me. Please keep them short.
• Easier vocabulary usually helps me understand.
• It’s OK to repeat what you said. I won’t be insulted. It helps me understand.
• Don’t get irritated when I ask you to repeat. It only means I want to understand you.
• The slower you speak the more I am able to listen and understand you.
• Please allow me time to think about your information. I really need that extra time.
• If I appear distracted, please help me refocus. I didn’t fade away on purpose.
I’m not sure that I have come full circle with this blog. Do I fully understand ADHD and the child with ADHD? Not at all, but I’m learning more and more each day as I grasp around the notion that my child or children may acquire this diagnosis one day. It’s alarming to me that “premature babies are 70% more likely to become children with ADHD if they are born at 34-36 weeks. The likelihood of having ADHD triples if the baby was born before 34 weeks.” (http://www.medicalnewstoday.com/articles/44574.php) But that’s another blog for another day.
Jac
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Posted by LilyGrace'sMom | Comments: (9) | Permalink
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GETTING TO KNOW YOU - SHARE VERSION!!!
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Feb 11, 2009 08:04pm (EST)
Periodically, we are going to do a version of “Getting To Know You” with random Share Members. Who better to start with than Shonda, author of 2 Miracles Here, 2 Angels Upstairs ?
I posed the questions to Shonda - and here are her replies. Don't everyone rush your local beauty store for Pantene.
1. How did you arrive at your children's names?
We wanted something original, something no other child would have. We decided to go with place names for their first names. Kai is named after a beach on Grand Cayman Island we where we've vacationed. It also means calm ocean, and he was the calmest baby in the womb so it seemed fitting. Boston is after the city where my parents met and became engaged, we chose it for Baby B. London is a city Mike has been to a few times, and honestly I just liked the name. The boys middle names are after athletes, this was Mike's idea.....but we also liked the names. Kai Alexander (Alexander Rodriguez, New York Yankees), Boston Derek (Derek Jeter, New York Yankees), London Jordan (Michael Jordan).
When we realized later we were having a girl during our second pregnancy, we decided to continue the place names. We chose Camden which is a borough or suburb of London. Her middle name, Kauai, is a Hawaiian island. Despite our best efforts of unique names, London has a buddy named London.....and Camden has another Camden in her class. Oh well.
2. What is the history of your name?
My parents were going to name me Amy, until three weeks before my due date when a neighbor named their daughter Amy. My mom went into work crying the next day and an Indian doctor she worked with gave her a book of beautiful Indian names. My parents choose Chanda, which means little Goddess and was similar to the doctor's name...Chandramouli. After a few months, when no one pronouced my name right they changed the spelling to Shonda. The ironic part is that 29 years later it was the same Dr. Chandramouli who performed a PDA ligation on London in the NICU!
3. When did you begin volunteering for the March of Dimes?
Two years after our premturity journey began, we formed a small team for March for Babies. I found Share after attending a committee meeting for M4B and have been on ever since. This spring will mark our fifth year walking to save babies, our team has grown from 4 to 50 people.
4. How do you get your hair so shiny?
My sister was genetically blessed with super shiny hair, but I have to work at mine a bit. Here is the secret. After getting out of the shower, I use two squirts of Pantene Smooth Serum, two squirts of Garnier Fructis Brilliantie Shine Glistening Drops, rub them in the palms of my hands then run them through my hair. Blow dry and style, instant shine!
Thanks, Shonda - for letting us get to know you a little better! You ROCK!!!
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Posted by weerock | Comments: (7) | Permalink
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