March for Babies

A few weeks ago someone asked me why we walked.  I always thought that the answer was obvious, but I guess I was mistaken.  Her theory was that the March for Babies was done primarily by those who were celebrating the successful growth and health of NICU babies...not by those whose babies never even made it to the NICU.  An interesting perspective, I suppose.  I told her that I walk primarily to honor the memory of my daughter, and to raise money for the M.O.D. with the hope that it will spare other families from experiencing the pain of losing a child.  She seemed to understand a little better after that, but I'm not sure that she understood as much as I wanted her to.  So why do I walk...and why will I continue to walk?  I walk to celebrate the life of my healthy Bean, to honor the many NICU babies who beat the odds and have gone on to lead healthy lives, and to remember my Gracie and all of the other babies who could not stay.  I raise money with the hope that the dollars we donate each year might one day make a difference in the lives of other families...
I guess once you finish the 'year of firsts' you are no longer a rookie and it all just become part of life.  Today (4/30) was our local March for Babies.  It was second year walking, and this year we served as Ambassador Family for our area.  Ultimately, many things fell through this year, and many of the 'public' events that we were told would be arranged for us never came to fruition.  We had hoped to use the promised newspaper interview and radio interview to bring the spotlight over to the stillbirth side of things, at least for a moment, but I guess it was just not meant to be.  After it was all said and done today, we got suckered into being on the local committee for next year's walk, so perhaps we will be able to help with coordination of some of these things.

Initially, my husband wanted to set our team fundraising goal at $10,000.  I knew that there was no way we could raise that amount of money, and we agreed on $5000.  A week ago, it really looked like we wouldn't get much further than $3500 or $4000.  Last night, it looked like we would hang right around $4000.  By the time we started our walk this morning at 10:00, we were at $5015.  By the time we finished the walk about an hour later, more online donations had come in and we were at $5200.  The credit for about half of the last $1000 goes to my BIL, who really turned it up while he was working his midnight patrol shift last night.  I was impressed by his efforts for us.  I think that he sees things through much different eyes since his wife's death in September; suddenly he gets how important the support of family is.  One of our walkers was missing today, as her husband has been quite ill; aside from this, we had a great morning once the sun came out. 

I would like to thank the following fellow BLMs for their contributions to Team Graci.ebelle...  Debbie, Dawn, Maggie, Jess, Lareina, Lori, Marjorie, Holly, Tina, Malory, Andrea, Katy, Jen, Michelle, Mary, and Katie.

Here are some pics from today.

Our Ambassador Family poster

 The back of our shirts

Gracie.belle wings on the back of Jenna's onesie

The front of Jenna's onesie - it says "My big sister lives in Heaven.  Team Grac.iebelle 2011"

Small Miracles Blog Hop #3

In her Small Miracles post this month, Franchesca said "the world is a better place because they were here."  She is right.  Most people will never understand or realize it, but the world is certainly better because of our babies. 

A year ago, our March for Babies family team raised just over $1500.  So far this year, we have raised $2500.  We still have just a week to raise funds for this year's walk, but even if we don't raise another penny this year, we have raised $4000 for the March of Dimes.  We do this in memory of our daughter.  If she had not been here, we would never have raised any money...and we would have never seen some of the most amazing generosity from the most unexpected of people.

My friend, Debbie, and I will be donating memory boxes to a local hospital.  We do it not for the hospital, but for the families that are going home, more or less, completely empty-handed.  Jeff and I have also donated to the memory boxes that our hospital distributes to families. 

When we started attending a perinatal and infant support group 18 months ago, I don't think we ever anticipated that we would still be attending at this point in our grieving process.  But we are still there.  (The running joke within our group is that we are support group junkies.)  Not only does going to the group meetings continue to help us, but we are now able to help those who are just beginning their journey.  We are able to show them some of the hope that waits for them further down the road. 

All small things in the scope of the world, but small things that matter and make a difference...

A Fellow BLM's Story

If you haven't 'met' fellow BLM, Mandy, I urge you to visit her blog and read her family's story at From Under the Weeping Willow.  Just over a month ago she lost her full-term son to Potter's Syndrome; what makes her situation so tragically unique is that this is the second child that she has lost to Potter's Syndrome.  I have been following her blog for about two months now, and I find her spirit to be amazingly inspiring.  If you have a moment, head over and send her some love.

March for Babies

For those who are new to my blog, or those who just haven't been doing much reading lately, I wanted to provide a quick snippet of information.  My husband and I were asked to be the ambassador family for our local March for Babies.  Our goal is to raise $5000 by April 30.  If you have/are not supporting another March for Babies team this year, please consider making a donation toward our team's goal.  No donation is too small; even $5 can make a difference.  Every penny donated is one step toward preventing another family from experiencing what we have all lived through.  If you have never walked in the March for Babies, I encourage you to find a walk close to you and participate! 

Donate to Team Graci.e.belle

Wordless Wednesday (This day would never get old...)

Overwhelming and Numbing

This grief overwhelms me; it burns in my stomach, and I can't stop bumping into things.... This loss is numbing me; it pierces my chest, and I can't stop dropping everything.  
~Alanis Morissette

As I look back at my posts from the last few months, I can almost see and feel my pain jumping off of the computer screen and smacking me in the face.   Some days I feel like I'm walking backwards through my grief.  I desperately want it to stop.  I want that constant feeling in the bottom of my heart and the pit of my stomach be gone.  I want to be able to stop mourning the loss of what I thought my life was going to be...to stop mourning what should have been with my first born...to stop mourning what will never be.  I want the griefless days to outnumber the days filled with grief.  I want to talk about people to stop telling me how strong I am and/or that they could never live through such a thing.  I want people to understand that we had two choices...to live through our loss or roll over and die because of our loss...and I want them to understand that strength has nothing to do with the decision.  I never asked to be, or planned to be, a BLM.  I don't want a dead baby and I certainly don't want to belong to this club anymore.  I just don't.  Too bad it isn't that simple. 

Despite feeling like I've been walking backwards over the last few months, the last few days have been pretty good.  Two of the last 5 days I have felt like Super Woman; I've been productive at work and home...almost feeling like 'myself'.  Fingers crossed that it sticks around for at least a few weeks!  

Wordless Wednesday

Small Miracles Blog Hop #2

If you haven't checked out Franchesca's new small miracles blog hop, head over to Small Bird Studios and check it out.


On March 12th I attended a memorial service for one of my students...a young man, almost 21 years old, with multiple disabilities, who passed away due to complications of pneumonia.  The certified lay minister that conducted the service also did our Gracie's service 19 months ago.  As I sat in the very back pew of the very tiny country church, I kept thinking about something that Becky said to us when we met with her before Gracie's service; something along the lines of... 'There's a funeral section in my book.  There are some stunning and thought provoking passages on those pages, some that I have used multiple times already, and some that I will probably never use.  But I always assumed, until you called, that I would never have a need for the children's service.'  She never expected to do a child's service, yet here she was doing it for a second time in less than two years. 

As she conducted the service last weekend, I heard those words over and over again in my head.  Thankfully, I was jerked back to reality as she read a prepared statement of appreciation from the young man's mother.  Appreciation to all who had been part of her son's almost 21 years.  But it was the number of times that she thanked the teachers, classroom aides and itinerant staff (PT, OT, speech, vision support, etc) that really caught my attention.   

My mind continued to travel for the remainder of the service.  I thought intensely about what it is I do every day.  I thought about the fact that time and time again I have worked myself to the point of sheer exhaustion over the last 15 months, most of the time finishing my days disgruntled, frustrated and resentful.  Disgruntled and frustrated by (and usually resentful of) the people the parents that are completely unappreciative of what we do for their kids...the parents that have no appreciation for the fact that two physical therapists juggle 90-100 kiddos over the course of the academic year.  Frustrated by the parents who are not home week after week when I show up for scheduled visits, even after I call to confirm.  Frustrated by the parents who use their special needs child(ren) to gain social status or keep the spotlight on themselves...parents who seem to find every reason to limit the introduction of things that will help their children improve.   Frustrated by the parents who find every possible reason to not stretch their kids for 5-10 minutes a few days a week, yet expect me to spend 30-60 minutes stretching them once a week.  Frustrated by how ridiculously difficult the PA Medical Assistance program make it to get approval for equipment necessary to maximize the untapped potential in these kids.  Frustrated by the classroom and personal care aides that are there simply for a paycheck and do the bare minimum with these kids every day.  Frustrated by the parents to instill no discipline at all in their kids simply because they are not 'typically' developing (but able to recognize the difference between right and wrong).  Frustrated by the adults that come into my office and expect me to make them better without any effort on their part...they just want to lay there while I wave my magic wand.  Frustrated by the adults who come into my office completely dependent on pain medication and oozing with gloom and doom; they come in with the mentality that they will never get any better or that in order to get better I have to cause them excruciating pain.  (Guess what?!?  Most of those people don't get better, regardless of the tactics that I employ.)  Hateful toward the parents of a teenage girl that I evaluated this week in my office; when I lifted her shirt to visually examine her back, I was greeted by multiple large, well healed scars across her back that were quite obviously the result of being severely beaten with some sort of strap. 

Then I think about my small miracles...the things that make my job worthwhile.  The parents who do express appreciation for what we do for their kids, despite the fact that the system is not perfect.  The victories over Medical Assistance that allow us to eventually get some awesome equipment for our kids.  The little girl with Down Syndrome who rubbed my pregnant belly and said "baby" with a huge smile....and the one that hugs me goodbye and says "I lub you Dudan".  The 5 year old who works on jumping for a year or two and then suddenly gets it...everything just clicks and she becomes a jumping fool.  The 18 year old girl with terribly misshapen feet and multiple other physical disabilities who 'walked' across the room for the first time year when we finally found the right gait trainer for her (and the right motivator - it turned out to be a man!).  The 18 year old young man with Cerebral Palsy (and very little cognitive deficit) that discovered (with help from myself and his aide) that he could independently use the city bus to get to the local college campus and navigate the campus with the help of a college-provided aide...and convinced his parents to let apply for enrollment.  The 4 year old with terribly limited motor skills that is finally able to roll over by himself, and the enormous smile that comes with it.  The 50 year old lady with a new knee replacement who has become terribly frustrated with what she interprets to be a plateau in her progress, then suddenly breaks through that plateau and takes off again and can't stop smiling because she's so happy with the new progress.  The 78 year old lady who came for therapy because she was weak and falling several times a week; she has been done with therapy for 2 years now, but still comes for exercise 2x a week so she 'won't get old again.'  She hasn't fallen in over 2 years, says that she is stronger now than she has been in 30 years and feels safe to live alone.  And, of course, the miracle of my own little rainbow, Jenna, who melts my heart each morning when she smiles up at me from her crib.