|
 |
|
ARCHIVES
ShareBloggers |
|
| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 | |
|
|
|
|
PERSPECTIVE
|
|
Jan 29, 2009 06:21am (EST)
 In December, our family of five crammed ourselves and our luggage into the car, and left for home. We visited family in Texas and Louisiana. Honestly, I was feeling homesick as six months had passed since our last visit.
Learning experiences always make themselves available to parents, especially when you would prefer they do not. This trip taught me many things about life, parenting, children, and most importantly – perspective.
Small dogs fear my small children. Little Josie, my sister’s Chihuahua , darted back and forth from beneath the sofa to lap up cookie crumbs. Each time my dear children were convinced it was them she liked, and not their cookies.
Perspective: Josie used to be heavier and longer than my NICU babies. Now, the scales give my children the advantage.
Small objects should be put in high places. My parents are still missing a remote control. Benjamin was marked as suspicious. As a result we had to manually operate the television.
Perspective: Benjamin likes shiny things and the remote was silver. He also loves pushing buttons and making things work. If indeed he did take the remote, then I am thrilled to report his severe vision impairment did not keep him from his goal.
Small children should fear my children when the Middleton Kidlets are together on an issue. Their same age cousin is bigger than they. However, he picked on them once too often. I walked in and all three of my children had his hands, feet, and body held down.
Perspective: My children argue much amongst each other. However, they will defend each other without fail when someone becomes a threat to one.
Five and a half years ago, it was hard to imagine my children chasing dogs, eating cookies, reaching for objects, hiding things, playing with children, and being a group of three.
Perspective: We do not know what the future will bring. All we know is that the present is where the action really is … So seize it with gusto.
Melissa
|
|
|
Posted by Melissa M. | Comments: (4) | Permalink
|
|
|
VOLUNTEERING
|
|
Jan 19, 2009 12:34pm (EST)
 My daughter Domonique was 21months old when I found Share in March 2006. I was so excited to finally connect with others who understood the range of emotions associated with high risk pregnancy, premature birth and the NICU experience. I was filled with guilt. I was constantly second guessing my decisions. “What if “this and “What if” that. I met some wonderful parents who reached out to me and helped me think clearly. They counseled me to not think about the “what ifs?” and instead to focus on how far my daughter has come. With the encouragement and support of these wonderful women I was able to move past the guilt and focus on enjoying motherhood. Total strangers who volunteered their time and shared their experiences helped me and for that I am forever grateful. These women were also my inspiration for wanting to become a volunteer. Within months I started volunteering for the March of Dimes and also on Share and I have been addicted ever since!
Volunteering is such a rewarding experience. It gives me a good feeling inside to know I was able to ‘give back’ to this community that has helped me. Over the past few years I have helped this community grow by volunteering on various committees. I have had the privilege of meeting and welcoming new members and helping them navigate their way around the site. I have prayed with new parents who were faced with uncertainty and struggling in the NICU. I helped organize live Chats and have ‘chatted’ with many members in our ‘virtual’ café. I helped launch the Shining Stars folder and worked with James and the Share Leadership committee on numerous projects to help better this community. I had the privilege of working side by side with some of the most amazing volunteers I've ever met. These days I continue to volunteer on Share but more on ‘behind the scenes’ projects.
Recently I began to wonder about a different type of “What if?” What if …I hadn’t wanted to get involved? What if… nobody cared enough to volunteer? Where would this community be if volunteers didn’t help raise awareness by sharing their stories? I can’t even begin to imagine where the March of Dimes would be without the support of its millions of volunteers. Volunteers are the driving force behind this mission. Volunteers are the lifeline that runs through this community and I just can’t imagine where Share would be without them.
Share is almost entirely volunteer maintained and operated and now that Share has grown to more than 28,000 members, more volunteers are needed. Have you given any thought to how you can make a difference in the fight to help save babies? How you can make a difference in other’s lives? Have you considered becoming a volunteer on Share? Many members volunteer their time organizing live chats, creating fun activities, working behind the scenes on graphics and technical issues and of course, reaching out to other members. There are many available opportunities that require minimal time commitment. If you are interested, I’m sure our great Community Host, James SooHoo, would love to have you as a volunteer.
Volunteering for the March of Dimes has given me a renewed sense of purpose. I’m sure it will do the same for you. Think about the possibilities. Think to yourself “What if… there were more volunteers?” Now that’s a “What if” that puts a smile on my face! 
Karen 
|
|
|
|
Posted by DNASMOM | Comments: (5) | Permalink
|
|
|
ANGEL AVENUE
|
|
Jan 12, 2009 05:53pm (EST)
 With March for Babies just around the corner, I thought that I would write about something near and dear to my heart. It is a project that our March for Babies walk site initiated two years ago and I have been the volunteer to organize it since its conception in our area. The project has many names; Angel Avenue, Heaven Highway, and Memorial Lane just to name a few. In Louisville, we call it Angel Avenue. It is designed to give a visual of how many babies (per month) pass before their first birthday.
I think of it as Ambassador Alley for angels. It is a way to include the families who don’t have pictures of their little ones or don’t feel like they can share their only pictures of their angels.
In the two years I have been doing Angel Avenue, it’s had two different looks. The first year, we made stickers with first names and placed them on the back of t-shirts that said “HELP”. The second year, it evolved into something more creative. We used the t-shirts that said “HELP”, painted names on the front, and attached angel wings on the back. Each t-shirt stood alone on a stand that I devised out of wooden rods. What will this year’s look like? I don’t know, but my creative wheels are turning. I would say stay tuned to see.
Why is this project so near and dear to my heart? I am a mother who has lost. I know what it feels like trying to get through difficult times. I felt lost and I felt like I didn’t belong anywhere. One late night, I logged on to Share. Immediately I felt accepted. I found out that I wasn’t the only person in the world that went through a loss. I received the support to stand on my own two feet again. I am forever grateful to those ladies. I am a firm believer in “Paying it Forward”, I want to give back what was given to me. But yet, I don’t feel like I am giving anything to these families. They are the ones that give me the privilege to memorialize their child.
I feel very honored every year that I get to organize and create Angel Avenue. As I create every t-shirt, I think of the family that is going through the grieving process. As I write the name on the t-shirt, I close my eyes and say a little prayer for that child. As I place each one in their spot, I hope that the family gets as much peace as I did creating Angel Avenue.
If you don’t have Angel Avenue in your area, I challenge you to start one at this year’s March for Babies.
Angi
"Phoenix's mom"
|
|
|
|
Posted by PHOENIX'S MOM | Comments: (9) | Permalink
|
|
|
THANK YOU SHARE!
|
|
Jan 06, 2009 10:53am (EST)
I went to a small high school and although I had friends, I was by no means popular. I was just a “bit”…okay, probably “a lot” too nerdy. I liked to read and do volunteer work and I got good grades and I didn’t date much. I didn’t have sisters to hang out with just very popular older brothers.
I went on to big ole Indiana University (Go Hoosiers! Get it, Whosures?) and again, I had plenty of friends but by no means was I the bell of the ball.
So when I got pregnant, I was excited that I was going to have something in common with all those perfectly popular princesses with their perfect pregnancies. Instead, I found myself in OBICU with a baby in the NICU. I worried about what people thought of me and if they wondered what I had done to make this happen. I worried about the future, I worried about the present. I saw pregnant women and hated them with the fire of a thousand suns. I had friends who were also pregnant who just couldn’t handle talking to me because “what if it was catching”? Once again, I felt like I had missed the boat on fitting in. I didn’t have baby showers where I was “baby fat” and sassy. Instead, I was just post baby chubby and grouchy and my baby was still in the hospital.
Once Riley came home, there were no play dates. There were therapists and RSV injections and doctor’s appointments. My little world got even smaller. I skipped Christmas Eve with my mom’s family for the first time in my life because it just wasn’t safe enough for my liking. (I think Rick was secretly relieved to not have to spend time with my ginormous family but don’t tell my mom that.) I loved going back to the hospital for appointments because at least we sort of fit in there. No one looked at our monitor or oxygen or g-tube. I chatted with the other NICU moms on the phone or email.
Then miracle of miracles, Riley took her first steps about a week before her first birthday. My little preemie world started to crumble. She got kicked out of early intervention and doctors joked at us with “are you sure she was a 25 weeker?”. Uh yeah, we have the million dollar bill to prove it. My new NICU friends suddenly didn’t have so much in common with us anymore and I started to suffer from a little bit of survivor’s guilt. I feel horrible even admitting that. I felt like I didn’t fit in with parents of full-termers and suddenly, I didn’t fit in with POPs.
Then one day, I was watching television and saw an ad for the March of Dimes. From there, I found Share and a role on the communications committee of our local/state MOD. I started volunteering at our NICU. Instead of asking God, “Why Me?”, it was more of an “AHA!” moment. On Share, I found so many people who got me…people who understand all the emotions that go along with being a parent of a preemie. All of sudden, I was talking to people who understood that even though Riley looked “all better”, she wasn’t and emotionally, I sure wasn’t either. I found people who were further along in their journeys who were able to light a path for me and hopefully, I’ve been able to do the same for others.
Each of our children is different and we all have different paths to take through our journeys. Whether we are parents of preemies or a child with a birth defect, whether our babies were born at 18, 24, 32 or 40 weeks, we’re all parents walking on an alternative path. Share gives us the opportunity to have someone hold our hands so that we’re not walking alone. We all fit in on Share, we’re all pieces of one big puzzle. Thank you all for finally giving me a place that I could really fit in. I can’t wait to see who and what the new year brings.
|
|
|
|
Posted by weerock | Comments: (9) | Permalink
|
|
|
SHARE YOUR STORY - 2008
|
|
Dec 30, 2008 11:46am (EST)
 As 2008 comes to an end, I'd like to take a moment to reflect on all that Share has accomplished throughout the year.
Our numbers grew to almost 28,000 members!!! On-site volunteers grew to 40...Share is volunteer managed and maintained 24/7. Share members raised almost $3.5 million this year for March for Babies! The Preemie Petition was launched, and Share members were present for the press conference announcing the petition and report card. ShareUnion 2008 was a success! We *ROCKED* Houston – with nearly 60 members attending from 18 different states! Live chats were held monthly, with new guest speakers, and increased attendance each month. A Share member was highlighted as a shining star each month to honor those who give back! Each recipient of the shining star award receives an hour power watch.
Share is an amazing community – and as you can see, much has been accomplished in 2008. The thing that makes me most proud, though, is that at Share…every story is heard! No question goes unanswered. The group of nearly 40 dedicated Share Your Story volunteers has made this online community something to be proud of. Each and every member who reaches out, shares his story, or responds to another parent has helped Share grow into our thriving community! YOU, by making your voice heard, have shared the story about a baby you love and touched others.
2009 promises to be an even better year. With new volunteers and new perspectives…Share will continue to grow and thrive. Thank you to all of you – for making Share what it is today.
Happy New Year!!!
|
|
|
|
Posted by weerock | Comments: (8) | Permalink
|
|
|
SHADES OF GRAY
|
|
Dec 23, 2008 02:30pm (EST)
 We get wiser as we grow older...so they. With Christmas just two days away, I marvel at how my 20-something brain used to operate. Everything was black and white, cut and dry, my life had extreme order. My calendar was full of fun, yet I was pretty predictable too. Things at work and home happened when they were suppose to....except for children.....that took some doing, it took some help.
My life has taken so many twists and turns down hidden paths and up tall hills I'm not quite sure what my original path was, or where it veered off.
I willingly saw a fertility specialty when babies didn't just appear for us. I can still see that piece of paper with statistics on it, 20% chance of twins, 6% of triplets...yet I we didn't go the IVF route, so I thought we'd be lucky to have one.
Lucky to have one, but blessed with three.
I'd love to say that if I knew everything THEN that I know now, I'd do it all over again. I wish I could, but I just don't know. I'm not a person who thinks everything happens for a reason. Why? Because I don't have a reason, a solid answer why two of my boys were born so early, only to fight in the NICIU....then pass away. I'll never know why at 29 years old I had to make a decision on whether go let Boston go, or continue to let him suffer. I won't pretend to know why two weeks later Kai's life was taken from us. I'd like to say I didn't bargain with God while London held on in the NICU, but I did. If I'd had a clue that my life and Camden's would almost be lost during her delivery, I surely would have not become pregnant....surprise or not.
At twenty-nine years old....I quickly learned life had many shades of gray. College educated my brain, but along the way I missed Emotions 101. It is certainly truly, I didn't know how deeply I could love another human being until I laid eyes on my babies. I thought I knew when they were in my belly, but actually seeing them was something else. Looking at three NICU warmer beds, then two, then one......I was in no way prepared for such loss, such grief.....I was rocked to my core, multiple times.
Now it my thirties I do indeed believe I'm wiser. Honorary degrees in neonatal nursing, pediatrics, occupational, physical and speech therapy, oxygen use and germ prevention are all framed and hung in my mind. Sometimes I wish I didn't have them or need them...but there they are, as a reminder.
An advocate to me used to mean "pushy". Today it means being an excellent parent...fighting for what a child needs and deserves. For kicks and giggles, when I come to the line "job title" on forms, I write Pediatric Developmental Specialist....not stay-at-home mom. You should too.
While the journey through infant losses and prematurity has not been an easy one, I truly believe it has made me appreciate things in life so much more than any college degree ever could have. I notice the butterflies and rainbows, each and every one of them. The sky is bluer, the grass is greener....life is lived fuller.
Every baby has a story, each one is a miracle....each and every one. Share babies are miracles, plain and simple. As I type, my two miracles are out playing in the snow. Laughing, yelling, tackling. I like to think my angels are dropping snow flakes from Heaven down on London and Camden.
Okay, so maybe some things do happen for a reason. London received surfactant, which lead me to the March of Dimes, which lead to March for Babies, then to an Ambassadorship.....then to Share.
Share brought me some of the dearest friends I will ever know, you know who you are. I am sorry that such circumstances brought us together, but I'm thankful to have you in my life.
Life is full of shades of gray. Someday, when I sit in the nursing home, will a full head of gray hair, I'll still be thinking of you. I'll remember angels born and gone too soon. I'll cherish pictures of miracles grown and changing the world. For now, I'll wish you a Merry Christmas and Happy New Year.
Shonda
|
|
|
|
Posted by 2 here 2 in Heaven | Comments: (8) | Permalink
|
|
|
"SHARE"-ING CHRISTMAS WISHES
|
|
Dec 15, 2008 01:10pm (EST)
 As Christmas time approaches and the chaos of the season settles in, I wanted to take the time to share some of my Christmas wishes for my Share friends.
Sickies to disappear Feedings to go well Weights to increase (for the kids!!  ) Sanitizer to be plentiful Camera batteries to be fully charged to capture every moment Smiles to be HUGE! Squeals of joy to be heard by all Stress to be low--what does it help to be stressed anyway? Gifts to be meaningful and heartfelt Resolutions to be realistic Friends to be close Family to be closer Hugs and kisses to be plentiful Hearts to be full for the true Reason for the season.
I would like to say thank you for another year of support and encouragement here on Share! You girls (and guys) know what my heart feels like this time of year and know how much I miss the reactions that Taylor would have for all of the excitement of Christmas. Know that Ansley and I are celebrating with you and your families wherever you are.
MERRY CHRISTMAS!!
Tracy 
|
|
|
|
Posted by Angel Love | Comments: (7) | Permalink
|
|
|
Q & A WITH JAC
|
|
Dec 08, 2008 05:46pm (EST)
 These are some questions that have been left over the years in the comment sections of my blog and from others in the community. I thought I’d answer some of them with you now…
1. Why do you spell family as “Phamily”?
My maiden name is Pham and it’s pronounced /fam/ so we coined “Phamily”…play on words yet some think it’s my spelling error. LOL
2. Does Lily Grace have a hair bow for every outfit?
Yes, she does. Shouldn’t every girl?
3. Did Mickey really pee in the sink at school?
No, he didn’t, but he really did attempt to. Oh No!
4. You call Billy “Billy Bob” sometimes. Is Billy’s middle name really “Bob”?
No, it’s Lawrence. He hates it when I call him William Larry. LOL
5. You bought your name?
Yes, I did. For $75 bucks, you can too. LOL $75 Ad
6. Do you ever sleep?
No, I’m really a vampire. LOL Yes, I do, more now than before. I’m getting too old for those 3AM late nights anymore…though I did stay up to 4AM last week playing in an online poker tournament. Crazy, I know!
7. Does Billy really spoil you like that or are you just exaggerating a bit?
Honestly, he spoils me more than I tell y’all. Just yesterday he took the kids grocery shopping then watched them ride their bikes outside while I took a 3 hour nap. Saturday, he went to supervise a job site then came home by 10am and took the kids to his work. They didn’t get home until 3pm. He never complains or lets on that he minds when I go to Bunco with the girls…twice a month. He’ll wake up on Saturday mornings (hardly works on Sat. except this past one) and will have the laundry done by the time I wake. He’ll do the dinner dishes every morning before I wake up. He takes LG to school every morning and will pick Mickey up early when I have late meetings. He cleans and cooks. He pays all the bills (he took that over when I went on bedrest over 3 years ago and won’t give it back…I don’t mind either). He lets me fly across the states to see my girlfriends every 3 months or so. He really does do so much more than I could list. He loves me to the moon and back. I think he’s swell too.
8. Do you really dislike it that people compare you to Lucy Liu?
No, she’s gorgeous! I find it quite funny since we really don’t look anything alike except our slant eyes…but then again, she doesn’t slant my way… Do All Slant-Eyes Look Alike?
9. Did the March of Dimes really help your preemie?
Yes, when you get to the root of what the March of Dimes did and continues to do. They did in that their research and development offered services and procedures that NICUs use to treat our preemies today. Lily Grace personally needed their surfactant discoveries, newborn screening test and many number of medical interventions while I personally took on the recommended daily intake of the B vitamin folic acid to help prevent neural tube birth defects. Did I know that at the time? No, but I’m so glad that they had this campaign so that I could prevent birth defects. What this really means is that the March of Dimes has helped every baby and continues to do so yet so many aren’t even aware. It’s our job to spread awareness and bring more light to the missions of the March of Dimes so that one day all babies will be born healthy.
10. Do you feel guilty about sharing your story especially since Lily Grace is so healthy?
I did when I first started logging on and blogging on Share. I thought I really didn’t have a story to tell. My story was simple…I was on bedrest, she made it to 34 weeks, her NICU stay was short and she has no lingering health impairments. I felt that I didn’t have a voice to complain or harp on my situation when others were experiencing such pain…daily. But a good friend shared that Share isn’t just about comfort, support and healing, but that Share was also about offering hope and that my story could offer hope to others. That’s when I let the guilt go and focused on sharing my experience…my story of hope. And in doing so, I’ve found healing and an amazing group of truly special friends.
XOXO,
Jac
|
|
|
|
Posted by LilyGrace'sMom | Comments: (8) | Permalink
|
|
|
PTSD
|
|
Dec 02, 2008 03:13pm (EST)
 Post traumatic stress disorder~ it's not a term I was ever really familiar with. When I was due to give birth to my first daughter Alex 7 years ago, 9/11 had just happened. I really think this is the first time I had heard that phrase before. I brushed it off and moved on never really thinking that it could or would ever apply to me.
Fast Forward to 2004 and our little Kyle was born at 33 weeks, with lungs similar to a 26 weeker. He was sick, really sick, I can't begin to remember how many times I've heard Doctor's tell me Kyle may not survive the night. Kyle's first 9 months of life were spent in the NICU...fighting and fighting to stay with us...I was with him every step of the way, my heart breaking every time an IV went, or another surgery was scheduled, every time a Doctor stopped making eye contact with me, every time he was in pain or struggled to breath, my heart and mind ached. I'm an avid reader, I had read stories of women who had a broken heart, or a heart that ached. I never got that feeling until I watched Kyle...my heart ached. We brought Kyle home in 2005 and we started to try to put our lives back together. I was still in crisis mode, Kyle came home on oxygen, a feeding tube, 16 medications and constant worry. I barely slept and hardly ate... we ended up back in the PICU many times...
Fast forward again...In the spring of 2006 life seemed to be leveling out. Kyle was sleeping a little more, his health while still on oxygen was leveling out and we all started to breath a little easier. Well at least everyone around me did...I was on the other hand not doing so well, my anxiety levels were increasing..to a level that scared me. I had constant thoughts of Kyle finally losing his fight and I felt like I couldn't tell anyone..that they would think I was crazy. I have always been a believer in mind over matter...I felt like this was all normal, so instead of seeking help or talking to a friend I hid it. It came out in other ways, none of it healthy for me. My anxiety increased and my health went down hill. Everytime someone told me they were amazed by me, I wanted to cry, I felt like a fraud.
Fast forward again..(you still with me ) I've started talking to someone, someone who specializes in the NICU, children and families. It's helping, and that is what is important. I'm not embarrassed by it, I'm proud of it.
The point of this...whatever your situation, there is nothing in the world harder than dealing with pain over your child. I felt like my child survived how dare I complain, there are so many that are hurting and aching so much more than me, who am I to complain? But all our struggles are important...I urge you to take care of yourself, really take care of yourself...
PTSD...~is an anxiety disorder that can occur after exposure to a terrifying eventt~ I can't think of anything more terrifying than the fight of our babies.
We can be strong together....
Love
Kate
|
|
|
|
Posted by katestclair | Comments: (9) | Permalink
|
|
|
|
 |
 |
 |
|
|
