March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

THE BEAN

Valerie Nelson

May 2013

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

HAPPY BIRTHDAY, BEAN

Sep 21, 2010 03:32am (EST)

Caitlyn's *fifth* birthday was the 15th...I simply cannot believe that five years have passed. It doesn't seem possible.

If she were alive, this would be such a milestone year for her. Instead, I have to remind myself that is not my reality.

I often find myself feeling guilty that I do not think of her as much as I feel I should...She is my only daughter, after all; my first baby; my angel. I suppose it is due to the busy days of life with two toddlers...Yet, I still feel guilty.

I have been able to continue some work with the neonatal projects I was involved with in London, and that has come at a very special time for me. Any chance to talk about my precious miracle, especially in a setting aimed at preventing the sort of heartache Hart and I have experienced, always makes me feel a bit closer to Caitlyn. And that has been quite important and comforting to me as we remember her birthday and upcoming death anniversary.

Our family spent Caitlyn's birthday at the library's story time (the boys love going each week) and taking some flowers to her grave. Zachary remembers visiting last year when we were in the US, and both boys know that is where we go to "see" Sister. They kiss her headstone when we leave...so sweet but so heartbreaking. Even though they seem to know we go to the cemetery to talk to Caitlyn, I'm sure they do not understand death at this point. Zachary asks many questions, which I do not yet know how to answer properly. I've found it rather tricky to explain death to a toddler. (smile) But they are growing up knowing about their sister, and they know she is part of the family. That is exactly how I want them to feel. The rest of the details will come in time.

The boys also decorated Caitlyn's birthday cake, sang to her and "wrote" in her card. They were surely too excited at the prospect of cake to sense the gravity of the "celebration" but it was very sweet (bittersweet, certainly) to watch my handsome little men sing to their sister.

Sleep child of mine, as the stars shine above. I love you as much as a Mommy can love.

IMG_2664

Posted by Valerie Nelson | Comments: (1) | Permalink

FLASHBACK

Sep 08, 2010 04:08am (EST)

We made no "announcement" but there will hopefully be a new little one joining our family...but hopefully not until the end of the year. There have been various issues from the beginning, and that, coupled with my (truthfully, *our*) fears from losing Caitlyn and miscarrying the twins led us to a very cautious approach to sharing news of this pregnancy. Yes, Tyler was born healthy and at full-term with few complications, but I couldn't help but feel we were tempting fate with this pregnancy, despite the fact that we dearly want to raise a third child.

So, I hid my belly from even close friends for as long as possible; we didn't call far-away friends to tell the news. We shared with our families, in strict confidence, for fear of having to face those many saddened, not-knowing-what-to-say looks.

Now at 23 weeks but having felt contractions for many weeks, I found myself at the emergency room this weekend...and quickly realized that it was only one day later than when I was hospitalized five years ago in an attempt to prolong my pregnancy with Caitlyn. Panic then set in. I was no longer the positive voice trying to calm my husband's obvious fears. Memories of those too-short weeks flooded my mind and I was desperate to *not* repeat history.

Thankfully, I was in my own bed that night, kissing the picture of my Bean that graces my nightstand.

I know that any pregnancy following the death of one's child is traumatic in its own way, despite the outcome. I enjoyed a stressful and fearful but full-term pregnancy three years after losing Caitlyn. My husband and I entered the (long) planning of this pregnancy knowing the logistical challenges we would have (we are in the middle of yet another international move but will be State-side for most of the pregnancy and several months following, just as we wanted), but my husband, especially, seemed to be completely unprepared for the worries he would develop at the first sign of early contractions. And, following my Labor Day ER visit and subsequent increased medical care, my nerves are rather on end.

I will now spend my days planted on the couch, happily, certainly, with high hopes to *not* meet my wee one for some months; enjoying every second I spend with this amazing miracle; knowing that it is my last pregnancy because the risks are simply too great for such an innocent being.

But, I am unsure how long this fear of losing yet another child will last. I have had some amazing opportunities to make an impact in the neonatal healthcare realm since losing Caitlyn; I *thought* I had dealt with my grief and fears and incorporated that experience into something positive (as much as possible, that is to say). Yet I find one event has quickly brought me right back to those days five years ago.

The death of one's child certainly stays with a parent and shapes the life we lead.

Posted by Valerie Nelson | Comments: (4) | Permalink

HER BEAUTIFUL FACE

Apr 21, 2010 07:01pm (EST)

My daughter had such a beautiful face. She had gorgeous dark eyes, a head full of hair, long arms and legs just like her dad. She was so much more beautiful than I could have ever expected. She was so much more important than I could have ever expected. She had such a beautiful face...And I can't remember it anymore.

This has been on my mind for a few weeks, now, but I have resisted talking about it because I felt that if I did, if I actually spoke the words or wrote down that thought, then it would really be true. And, it is painful to think that it's true.

The Bean Team is walking for MOD for the fifth year this coming Saturday...in London again. For some reason, the number five has such significance, is such a milestone, isn't it? It's true for many instances, and when it refers to remembering someone it seems to take on an ominous tone. *Five* years...Five whole years without my daughter in my arms...Five years wondering "what if?"...Five years trying to find a new "normal"...Five years of heartache. That pain isn't at the surface every day, of course, but it will always be there in some respect.

I feel quite guilty that I cannot seem to picture Caitlyn's face in my mind. I can see her tiny hand holding my finger; I can picture her long leg propped over the support blanket; I can see her phototherapy "goggles," as we used to joke. But, I can't seem to recall the details of her gorgeous face. Yes, we have pictures - not nearly enough, of course - but admitting that I can no longer visualize the soft curves of her nose and lips, well, it breaks my heart and I feel that I have, yet again, failed my daughter.

Yet, as I just typed that sentence, a completely unexpected sight of one particular moment with her flashed in my mind...Not the picture I have tried to remember, but another of a special time spent with her. Why could I not think of that before? Was that my incredible daughter's way of showing me she is, indeed, still with me? I wonder...I believe...

I love you, sweetheart.

Posted by Valerie Nelson | Comments: (3) | Permalink

IT'S BEEN A LONG HOLIDAY

Jan 03, 2010 10:42pm (EST)

The 80s for Babies fundraiser was a big success, thanks to all of the local vendors and guests! We raised 850GBP (more than $1,300) to share with MOD and Bliss. It really was a wonderful evening, and I felt so honored to have the opportunity to organize it. (I added a picture with Nate Brown, who traveled from the National Capital Chapter (!), and Robin Legge, from Bliss.)

As I welcomed guests and kicked off the evening, I couldn't even get through my few planned remarks, though...I have told Caitlyn's story in front of hundreds of people, yet five years after her death, I choked up in front of 50. It still hurts. I still miss her. I still cry.

The week after the event, I suddenly found myself with entirely too much spare time. I spent a lot of energy on this event - it was the largest fundraiser I've held, and I became so energized by it even though it seemed that I ran non-stop for the month prior. I moved with a purpose - each day, I had tasks to accomplish, a deadline to make, a goal to meet. Knowing that it honored Caitlyn made it that much more meaningful. When the event was over, though, I found myself feeling a bit lost. The drive that had risen seemed to have vanished in the absence of a date to look forward to. I kept thinking "Now, what?"

Christmas came, and I recognized that I was moving more slowly. I did take advantage of my extra time and enjoyed baking cookies and decorating the tree with the boys. But I had completely lost my motivation. I tried to avoid the emptiness of simply "being" without anything to work towards, but I wasn't successful. Every day, I looked at Caitlyn's stocking...I didn't do anything but stare. Hart and I have written her a letter each year and save them in her stocking...This year, as much as I missed her, I couldn't write that letter. I put her stocking away with the rest of our decorations, to be opened again next year, and have felt guilty ever since. I didn't feel that I had anything to say - anything new, at least. What had changed since that first letter? I still miss my daughter; I still love her; I still think about her; I still get angry that her life was so short. How many times can I say the same things? OK, a lot has changed in five years - We have two amazing sons; I have met NICU families and worked on preemie projects in other countries. But, the words still wouldn't - won't - come. Why *is* that??

It's similar to writing here - I have sat down at the computer several times since the fundraiser, but nothing...

I truly don't feel paralyzed by grief, as it sometimes seems as I read my entries. I remember *being* overtaken by that grief, unable to complete even simple tasks. It.was.not.pleasant. I do go about my days mostly happy and, dare I say it, even let a genuine laugh escape from time to time.

I do feel that I have positively incorporated my experiences into a functional new normal. I do feel that I am a better person after knowing the incredible love of one's first child. But, I *miss* her. The boys are at such fun ages right now, and I can't help but miss the life that should include the boys running after their big sister, trying to do everything she does...The life in which my beautiful daughter lights up a room, and our family is complete.

I know that I work much better when I have a goal, a purpose, and being at home the past 5 years - despite the amazing opportunities I've had - has been challenging. I suppose the abrupt ending of that energy I got from the fundraiser led to a rather sharp drop in my sanity.

It didn't help that most of my other projects were on break over the Holidays. I hope that as those opportunities get back on schedule, I find energy - purpose - again.

Again, as I read that sentence, I feel so guilty...My "job" right now is to raise our incredible sons - each one such a planned for yet unexpected blessing. *They* are my purpose, and I value that so much. Why is it that it doesn't seem to be enough sometimes??

13746_182813094683_45923939683_2758124_6497395_n

IMG_1849

Posted by Valerie Nelson | Comments: (2) | Permalink

80S FOR BABIES ~ LONDON

Oct 27, 2009 10:13pm (EST)

Party like it's 1985 at the March of Dimes / Bliss 80s for Babies quiz night! Come dressed in the clothing and styles of the 1980s if you dare, and bring your best trivia knowledge to the Freemasons Arms in Hampstead. The event will include a quiz night and nibbles, with additional food and drinks available from this award-winning gastropub overlooking Hampstead Heath.

Registration is £10 per person in advance, £12 at the door. Teams of four, maximum. To register, please contact Valerie Nelson at vknelson@gmail.com.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Why Participate?

Preterm delivery can affect any pregnant women, regardless of high-risk medical history, age or ethnicity. Babies born too early often face a myriad of challenges throughout their lives, and many are simply too fragile to survive. The global effects of preterm births recently made headlines, noting that more than ONE MILLION preterm babies die each year. (https://www.marchofdimes.com/files/66423_MOD-Complete.pdf?src=mod.com)

Although noteworthy medical advances have been made, such as the use of surfactant therapy to hasten a baby's lung maturation prior to birth, there is a great deal that science does not yet know. Moreover, parents of babies in neonatal units are often left feeling isolated and alone during a very frightening and stressful time.

With your help, we really can make a difference - all around the world! Both of these charities sponsor important outreach and support programs to help families with babies born prematurely or with special medical needs. My family has personally been the recipient of their much-needed support and given an outlet through which to first, grieve, and then, give something back after our daughter died in 2005. March of Dimes and Bliss have given me an opportunity to make an impact in my daughter's memory, and that offers such an incredible comfort to a mother.

To learn more about Bliss, please visit http://www.bliss.org.uk

To learn more about March of Dimes, please visit http://www.marchofdimes.com/fightforpreemies

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Every Baby Needs a Chance to (see) SAY ANYTHING

Join March of Dimes and Bliss on their totally awesome mission by being a member of "The Totally Awesome Top 40": Individuals, groups and companies who contribute £50 or more to help support local mission programs in Washington, D.C. and London and fund all-important research to help more pregnancies reach a healthy 40 weeks and more precious preemies to survive and thrive.

Contact Valerie Nelson at vknelson@gmail.com to help fund March of Dimes' and Bliss' mission and give every baby a chance to see Say Anything (or a classic movie of their favorite decade!).

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

DATE: Friday
                     20 November 2009

LOCATION: The Freemasons Arms
                     32 Downshire Hill
                     Hampstead Heath
                     London NW3 1NT

SCHEDULE: 6:30 to 10 p.m.

DIRECTIONS: The Freemasons Arms is located at 32 Downshire Hill off of the Hampstead High Street. Closest Tube stop: Hampstead (Northern line). Nearest bus routes: 268, C11.

Posted by Valerie Nelson | Comments: (1) | Permalink

SO TOUCHED

Sep 21, 2009 11:25pm (EST)

The last several weeks, *many* people - most of whom I barely know - have commented on or asked about Caitlyn. Folks have noticed the signature on my e-mail, a favorite quote and this blog address, or have asked as a result of the volunteer work I'm doing.

Now, I always love talking about my daughter - what mom doesn't cherish the opportunity to brag about her children, right?! But, I have been simply amazed by the kindness of strangers lately, after feeling like such an outsider to the "mom's club" for so long. Usually, I have to quickly decide if I choose to share Caitlyn's story with some unsuspecting and perhaps well-intended but completely insensitive person who comments that I need a girl to balance our two boys. It has felt so welcoming and comforting to be *asked* about Caitlyn, by folks who have not lost children and could therefore never-in-their-worst-nightmares begin to understand the grief that too many of us know.

I use that wording to emphasize the unique, unimaginable pain that parents feel when their child dies, but also to exaggerate, just a bit, how I have become rather jaded when talking about Caitlyn with most people (because...*most* people haven't experienced such pain). For four years, now, I have endured - as surely many of you reading this have - the gaping jaws, stammering words and abruptly-ended conversations that immediately follow the mention of my daughter...my angel. That is a most unsettling, hurtful and lonely situation - watching someone become so uncomfortable about a person so incredibly important to me.

I don't know why so many people seemed to have noticed Caitlyn recently, but I certainly appreciate it. I've said it many times before - I really feel that having others remember her makes me feel closer to her. It reaffirms the fact that she *really* was here. She was a real person. She touched many hearts. She changed my life in ways that I can't even put into words.

I don't pretend to know how other parents feel about losing their children, but I suspect that this is a common feeling. I am so thankful for the continued support I receive from friends and on this forum, even when months pass between my writings. The kind words left on Caitlyn's birthday were truly uplifting to me - Thank you to each of you who read about her. It was evident to me that those words were not merely platitudes, but heartfelt and sincere. Thank you to each of you "friends-of-friends" who pass your well-wishes on long-distance. Know that every one of you has helped me feel more like a mother to my daughter.

Posted by Valerie Nelson | Comments: (3) | Permalink

HAPPY BIRTHDAY, BEAN

Sep 15, 2009 04:01pm (EST)

Today is Caitlyn's fourth birthday. Yet again, I find myself saying "I can't believe so much time has passed." And, yet again, I have to admit that yes, yes it has.

For a couple of weeks, the word "looming" has been on my mind - as in her birthday / death cycle has been looming ominously...Yet another year that I will bake a birthday cake and write a birthday card and buy birthday flowers for my baby girl who will not get to enjoy them. But yet, it is something I feel that I need to do. I get frustrated to hear people say "This *would be* her birthday"...To me, this day will *always* be her birthday, as it is the anniversary of the day she was born...pretty straightforward, isn't it? I think I also *need* it to be her birthday, though...It helps me feel close to her...It reaffirms her existence on this planet. That is something that, as a mother without her baby in her arms, I need.

I have the opportunity to work with a team of infant health non-profit and medical professionals to develop documentation for parents and training for NICU staff regarding end of life decisions for neonates. That happened to be how I spent this morning - in a meeting. And, as much as I just wanted to stay in bed (it is a chilly, grey, rainy day here in London, so that did not help to motivate me this morning!), I am thankful to participate in this endeavor, in Caitlyn's name. The outreach will be distributed nationally, and it is an issue that needs much attention. And, I think it was a fitting way to spend my time.

Her brothers know about her and know that today is her birthday - as they get older, they will know more. She *is* their sister. Tonight, we will dedicate dinner to the Bean and have some birthday muffins in her memory. And, in a few short weeks, we will again remember the grey, rainy day in DC when she died. Time is passing too quickly, no matter how hard I would like to hold on to it.

Happy birthday, my precious baby girl. You have changed my life forever. I miss you. I love you.

Posted by Valerie Nelson | Comments: (9) | Permalink

THE SAME OL' STORY

Jul 07, 2009 08:50pm (EST)

I've been volunteering with the special care baby charity here in the UK for some months, now, and I'm beginning to know the staff and "ins and outs" of these NICU's. During my conversations with some parents last week, I immediately heard the same concerns, worries, questions, angers and jealousies that I, myself, felt for so long after Caitlyn's birth and death.

One mom, standing by her daughter's incubator, wrung her hands as the nurse cared for the baby and tried to hold back tears in her eyes. Her fear was palpable. Others wondered if they would ever be "normal" again, after this terrifying experience. I did my best to explain my new definition of life after the NICU (and, in my case, leaving without my daughter) and offer assurance that they will find a new "normal". But, it breaks my heart to see these parents facing this fear. And, it is even worse to know that there truly aren't any words to make it better for them.

I'm missing The Bean more lately...surely because of this work. And, even though it is fulfilling to me and I truly hope to make a difference for parents - to offer some support that Hart and I didn't have - and even though I feel I'm doing something positive in memory of Caitlyn, in some ways it brings my pain to the surface again. I don't know how to partition it. I miss her.

Posted by Valerie Nelson | Comments: (4) | Permalink

NOW WHAT?

May 31, 2009 09:49pm (EST)

Our walk went quite well this weekend. We had twenty people join us as we walked through two of the Royal Parks in London and returned to our home for a party. The weather was a fabulous, sunny, warm day. We really couldn't have asked for a nicer day.

Last week seemed like such a blur, as I put all of the finishing touches on the event. I wanted the day to be as perfect as possible, and I spent too many late nights and early mornings planning and cooking. (grin) But, it was worth it. We seemed to have made an impact and touched some hearts, and people are certainly more aware of the effects of prematurity.

Despite how tired and stressed I made myself (smile), it felt good to organize the day. After everyone left yesterday afternoon and we put the boys to bed for naps, I actually fell asleep on the couch. I *never* take naps. I actually sat down to watch a program with Hart, but that apparently didn't last long. lol I felt as if my body just sank into the couch - as if all the stress had suddenly left because the event was completed. It was really an odd sensation. Then, I began to think "Now, what?" Life has been so busy for weeks and weeks, now, and the calendar is still full through the Fall...But, this was the most important, personal and meaningful item on the agenda. That is surely why it took such effort (again, even if I brought it on, myself!). The other "to-do's" are simply tasks or work that, even though might be volunteer work with the UK prematurity charity and dear to my heart, just doesn't seem to take the same "toll" on me.

What will I devote my focus to, now? What will I do with this seemingly spare time? Logically, of course, I know that I won't really have that spare time - it will be filled with the to-do's and certainly with time spent with my two favorite little boys (smile). But, it *feels* like I should have some next project that focuses on Caitlyn. I'm not sure that any of that makes sense. (smile)

Here is the link to the video I made for walk this year. I don't know how many times I've watched it...If only I had more than pictures of her.

I love you, Bean.

http://www.onetruemedia.com/shared?p=8cdb3d0b2af04ed17442a4&skin_id=601&utm_source=otm&utm_medium=text_url

Posted by Valerie Nelson | Comments: (4) | Permalink

VERY BUSY WEEK

May 18, 2009 08:39am (EST)

Last week, I entered a NICU for the first time since Caitlyn died...nearly 4 years ago. I am volunteering with an organization with the same mission in the UK as MOD in the US, and I have found a great deal of comfort in having the opportunity to be involved in this way again. Part of my role is to liaison with the staff and parents to ensure families have the emotional support and services they need as well as medical care for their babies. I was rather apprehensive about the work, even though I really wanted to do it...I simply didn't know what to expect from my reaction. But, I found that I was energized rather than despaired. As I continue working with the units, I'll spend more time with families, so I expect some days will be really emotionally draining. But, I sure hope that I can help support these families. Hart and I didn't have any support while Caitlyn was in the NICU, nor immediately after she died, and I now know what a huge difference it can make.

And...we just celebrated Tyler's first birthday this weekend. I cannot believe that much time has passed. (How many times have I said that recently?!) I'm so thankful he arrived at full term and healthy, though most days, I still feel like it was pure luck. The emotions of losing Caitlyn have surfaced a bit, again, just because I wish she had been here to celebrate with us. It's that longing, wishful feeling of missing the "what should have been." I know she is in our hearts, I just wanted her here eating cake with us, too.

IMG_1033

Posted by Valerie Nelson | Comments: (3) | Permalink

Archives