CLICK HERE to Light a Candle for Gracie and Any Other Soul in Need
Light as many as you would like - as often as you would like.

Saturday, January 29, 2011

With Sincere Thanks...

... to Katie, Lea and Jen, I would like to show you a few of Gracie's new things.

Katie made Gracie a beautiful ornament for Christmas...


Lea was kind enough to  make a pair of angel wings for Gracie, as well as do a Pregnancy and Infant Loss Ribbon with Gracie's name on.

Jen took a picture of Gracie's name under her Christmas tree - isn't it just the cutest!?!?!?

 Thanks so much, girls!!!  I love them!!!!

February FOLFOH Writing Challenge

Each month, the girls over at FOLFOH will be posting a writing topic.  If you want to participate, simply write a blog post on said topic, then link to it on their site.  Another BLM grief site used to do this, and I looked forward to it.  Sadly, they stopped doing it shortly after I came to this community.

February's FOLFOH writing topic is: Valentine's Day is quickly approaching. Write about something special a friend, family member, or other loved one did for you after your baby(ies) died that really touched your heart.

Sadly, I think most of the things that have been done for me/us have been done by other BLMs.  I guess that came out wrong.  I am always grateful for the things that other BLMs do to remember Gracie, but I wish sometimes that more people around is in our everyday lives would do more to remember her.  In terms of things done for us by other baby loss parents, it's hard to narrow it down.  I would have been simply lost in the early days without the support of my friend Debbie.  That kind of support is invaluable.  The other thing that will always stand out for me came from my friend Dawn, who had a star named after Gracie. 

I think the thing that sticks out the most that was done for us by a non-BLM or BLD is an ornament that a friend made last year for Christmas.  He did not know that we had decided that Christmas tree ornaments would be the thing we bought for Gracie each year.  He just emailed me and said that he had made an ornament for her.  He does a lot of work with powder horns and scrimshaw.  He actually made this from a piece of broken horn that he couldn't use for anything else.  It was, and is, a very special gift.

The Week of Speaking Before Thinking

I missed 3 days of work this week because I was sick, which means that I spent a grand total of 15 hours interacting with people.  Within that 15 hours....

On Monday one of my outatients asked me about Gracie.  She said that she had wanted to ask for quite some time, but didn't really know how to ask.  This woman is educated - she's a registered nurse (who should be retired, but still works home health and roving health fairs one day a week to pay for her horses).  After hearing a little bit of Gracie's story and finding out that she likely had Down Syndrome, she looked as me and said "But you know, Honey, if she was Mongoloid and going to have all kinds of health problems, it really is probably better this way..."  Blah, blah, blah.  Seriously?

Fast forward to Friday.  One of the students that I see at school had a substitute personal care nurse with her.  I've met this women before, with another student, but apparently I haven't run into her since I was pregnant with Gracie.  I come into contact with so many personal care nurses and therapeutic support staff personnel as I move from school to school that I have a hard time keeping track of things like this.  I knew it had been a while since I had run into her, but I didn't realize how long it had been.  In the big picture, it's really a small pool of people working within a small pool of students, and they move from case to case quite frequently.  (I could poll 20 nurses or personal care aides, and at least half of them would have a list of 3 or 4 other kids from my caseload that they have worked with over the last year or two.)  Anyway...this woman yesterday asked how my 'little one' was.  I gave the standard answer "Oh, she's great.  She's growing like a weed, which is what we want!"  She asked how old she was now and I said "just about 4 1/2 months."  She gave me the most bizarre look and then her eyes lit up and she said "Oh!  You have a second already!  Oh, my!!"  And before I could get a word in, she asked about my "first."  She asked it was a boy or girl, and how old now, etc.  God love the third grader I was working with...she didn't miss a beat.  She said "Oh, Miss Nancy, Miss Susan's first baby died."  Even kids with 'special needs' don't miss a thing.  The nurse said something to the effect of "Oh, Honey, Miss Susan's baby didn't die", to which I responded, "Actually, she did."  Enter the seemingly eternal blank stare.  I filled her in as much as I could in front of a third grader, and she gave me the same response that I got from the patient in my office.  Seriously???  WTF???

I don't get this much anymore, so it seems a bit odd that I got it twice this week, especially since I only worked two days.  But seriously, it's been a year and a half.    I know that these comments are just misguided, and that they are really meant to be supportive, but still...  I am happy to say that it doesn't have the scarring impact that it did a year ago, but it does sting a little bit sometimes to have someone tell you that your kid is better off dead.  Yes.  I am sure that we would have faced some difficult situations later in life, logistically speaking, that we don't face now.  Yes, there probably would have been a few health concerns.  But that's part of life.  Down Syndrome or not, I would have loved Gracie fiercely every single day for the rest of my life.  Nothing can/could change the fact that she is my daughter.  Nothing.  As it is, I will still love her every day for the rest of my life, just not how I was expecting.  I guess this is just hard for people to much as I hate to admit it, it's nearly impossible for anyone to accurately 'imagine' being in our shoes.  The only way to really understand is to be here.  As much as I would love people to understand, I wouldn't wish it on anyone.  Ever.

It is what it is, but I am just amazed by how naive people around us really are.  Still.  

Thursday, January 27, 2011


I have been sick for the last two days.  As I sat on the couch today trying to muster the gumption to get some tea, something dawned on me.  Today I can say that I was pregnant with my first child 18 months ago.  In one week I will not be able to say that.  Monday will mark 18 months since Gracie died, and the wee hours of Tuesday will mark 18 months since her very silent birth directly into Heaven.  In some aspects, it seems just like yesterday, and in other aspects it seems like a lifetime ago.  I looked at her pictures on the computer for about 20 minutes after DH went to work this afternoon.  To be honest, I don't think he even realizes that we are approaching another milestone, and I'm not sure that I really want to remind him.  

It just seems impossible that it's been 18 months already.  I was reading a post by Acacia's mom earlier, and I can definitely relate to something that she wrote.  As much as I didn't want it to, I knew this day would come eventually, and it saddens me beyond words.  It makes me feel even worse to admit publicly that the details of Gracie's face are starting to escape my mind.  The generalities are still there, but the details are fading.  It seems impossible, since I look at her pictures frequently, but I now have to actually look at her pictures to recall the details. 

I look ahead another 5 or 10 or 20 years and wonder if I will remember.  I wonder how much will have faded.  I wonder how often I will look at her pictures.  God forbid, but I wonder if there will ever come a time that her birthday slips past us.  I wonder what she will look like when we are reunited...and I wonder if we will recognize each other then. 

~~ possible triggers below ~~

For the last few months, I have walked around every day with blog posts in my brain.  Occasionally I am able to start a post and come back and add to it over a period of days, but for the most part I usually don't have the time needed to sit down and get my thoughts into the computer.  As a result, I continue to walk around with random thoughts and feelings floating around in my brain...this post is an attempt to purge some of them and make space for some new thoughts in there!  Some of it will seem really random, and some of it not so random...I am just using this as a medium to get it out. 

My sister is currently assigned, via the Peace Corps, to a teaching assignment in Namibia, Africa.  She left for this assignment 2 weeks after Gracie's funeral, and will be in Namibia until some time between October and December 2011.  After much debate, she decided to some back to the states for a 3.5 week visit that covered the last half of December and the first week of January. To say the least, her visit did not go well, for many reasons.  While I tried to have no expectations for her time here, I was so excited for her to meet Jenna...but about an hour after she met her, an unexpected phrase crossed her lips.  "I'm just not that into babies."  Talk about a knife to the heart.  Prior to her departure, there was unpleasant communication between us about this, and other things that happened during her visit.  On the surface, things were okay when she left, but I am not sure that they are really okay.  I am worried about what things will be like when she comes home at the end of the year; I wonder what kind of interest she will have in my kids in the coming years; I wonder, in general, how different she will be once she gets back to the states and settles back in.  I am still somewhat disappointed about how things unfolded, and honestly, I am still a little mad about some of the things that happened.  Some of these feelings are deeper rooted and go beyond this visit, but I really don't think that she understood that when I threw it out there.  I don't know...I am feeling quite anxious and unsettled by the whole thin.  I hope the things that were amiss are better by the time she returns.

I seem to be quite frustrated by having to wear my big girl panties lately.  Over the last couple of months, I have had to fight, with all I have, the urge to unleash on a few specific people that I know in real life.  It's an incredible urge to blatantly and bluntly tell them what/how I really feel about them.  Holding my tongue and speaking in a socially acceptable manner is really starting to get under my skin.  At the risk of sounding judgmental, these people are all self-centered idiots (of varying degrees, of course), and everyone knows that except them.  I have no interest in being around or working with these people, but it's unavoidable.  *sigh*  I suppose that in good time, their eyes will be opened somehow.  Until then, the big girl panties it is. 

Completely jumping topics...  Over the last several months I have been unable to shake an unhealthy obsession with/fear of death.  I am petrified of those close and important to me just disappearing. Some days I want to suggest that DH and I ride in separate cars...just in case.  I am petrified that he won't come home from work one night (He's a cop.  Nothing ever happens here, but the thought is always there.)  I was petrified that my sister's plane would crash into the Atlantic during her trip home over the holidays.  I'm afraid of waking up to find one of my dogs or cats dead.  And of course, I am convinced that I will go in to get Jenna up some morning and she won't be breathing.  I am certain that this is the largest root of this whole psychological mess, and that eventually, the volume of this fear will start to fade a little bit.  In the meantime, it's kind of making me a little nuts.  :-P

Jenna's birth has forced me to plunge back into 'communication' with my mother, since DH says that she will not be intentionally kept from her grandchildren.  My parents divorced when I was 14 or 15 and I moved in with my dad when I was 16.  Prior to that, my relationship with my mother had been in the crapper for several years.  Most people assume that it's because I was a snot-nosed kid who couldn't get over something.  Definitely not the case, but only a few people closest to me have ever seen my mother's true colors to understand the whole story.  Some people, including my husband, never saw it until several years after he met her.  The fact that my mother and step-father did not show up for our wedding 2.5 years ago, more or less as part of some passive-aggressive tactic, opened the eyes of many non-believers.  

Fast forward to my pregnancy with Gracie.  No communication at all between me and mother for the duration of my pregnancy.  The only thing we heard from their camp is that they stood in a local restaurant and told the girls working there that our decision to have a baby was some huge, life altering mistake.  Other than that, all was quiet.  And honestly, I was okay with that.  I am faaarrrr less stressed with things are quiet.  Several days before Gracie died, my stepfather started calling Jeff to tell him that my mom's birthday was at the end of the week and I should call her to wish her a happy birthday.  As luck would have it, Gracie died on my mother's 60th birthday.  Jeff called my stepfather to tell him that I would not be calling, and why.  And then they proceeded to call us 4 times in the 11.5 hours that I was in labor.  Phone calls were NOT what we wanted...from anyone.  We debated whether or not they would be included in the funeral, and ultimately, we decided that my mother had the right to mourn her granddaughter.  There were several points during the service when all was quiet...and all you could hear was my mother sobbing.  I have lots to say about this, but I will leave it at that.  After that, very little communication from their camp until about half way through our pregnancy with Jenna, when my stepfather cornered my MIL outside the grocery store one day.  Again, when Jenna was born, Jeff decided that my mother would not be cut off from grandchildren.  And that's all it has taken to open the door.  Once the door is cracked, my mom tends to come through on a bulldozer.

She was very over the top in the first few weeks after Jenna was born, and then they suddenly disappeared again.  Good and bad.  Bad because she is sitting around waiting for us to call and invite them over to see Jenna.  (We have a standing rule with everybody - if you want to come see her, call.  If we're home and up for visitors, you are welcome to stop by.  We no longer issue gold-plated and engraved invitations for people to come visit.)  Then she friended me on FB.  I didn't do anything with it, and after about a week I checked to see if she had friended anyone else.  It's been a few months, and she hasn't friended anyone else, so I know that it's another cyberstalking tactic, which I just can't handle.  I know absolutely, without any doubt, that if I friended her on FB so she could see more pics of Jenna, that she would go through my profile and friend list with a fine tooth comb...and eventually end up here.  In Gracie's blog.  Which is exactly where I don't want her.  Ugh.  The whole thing is uber-stressful, and I don't need that kind of stress.  Unfortunately, I don't think it's going to get any better. 
And last, but not least, there is the age old question that has been spinning in the front of my brain again.  Why do I come to this place...the baby loss blogosphere?  Why do I come here?  What does it mean?  I suppose, on a basic level, the appropriate answer is that I come here to expel my grief.  Sometimes I wonder if coming here keeps me here.  I wonder if not coming here for a while helps to lift me up?  Am I down because I come here or do I come here because I am down?   I think, for the most part, I come here now because I am down.  The days that I come here and write are the days that I am really missing my little peanut.  They are the days that I am overflowing with thoughts that I can't really purge anywhere else, because they are thoughts that not many people will understand.  I can come here, and offload whatever demons I'm carrying with me, and usually feel a little better after I do.  For the most part. In recent months I have begun to hold back a bit, even is this forum, simply because I have had trouble really purging my feelings without offending someone in the process...even here.  Who knows how long I will continue to come here to purge.  And in all truth, who knows how long I will come here to memorialize my first born child.  I guess that only time will tell...

So there is all of the crap that has been spinning in my head for the last few weeks...  It certainly makes me seem like a hot mess, huh?  In all reality, it's not too bad as long as the thoughts don't bang into each other as they spin.  :-)

Saturday, January 22, 2011

And the Winner is...

...comment #9, which belongs to Freja's Mom..  Please email me at sand0113 (at) gmail (dot) com so I can forward the gift certificate details to you!!    

Friday, January 21, 2011

Last Day to Enter

Today is the last day to enter for a chance to win a $25 gift card to Small Bird Studios.  I will pick the winner tonight using

PLEASE GO TO THE ORIGINAL POST AND LEAVE A COMMENT TO ENTER.  For simplicity's sake, I would appreciate that you not leave entry comments here on this post! 

Wishing you all a peaceful, safe, warm and snowless weekend!

Monday, January 17, 2011

Face2Face Groups

This may be old news to some of you, but perhaps new news for others of you.

The girls over at Faces of Loss, Faces of Hope are organizing face to face groups for baby loss mothers across the country.  Check out the Face2Face page for more information about groups in your area or for information about how to become a group leader...

100 Followers - This Calls for a Giveaway!!

So when I logged into my blogger account this morning, the number 100 jumped off the page at me.  I know that there are lots of high profile baby loss blogs out there, and most of them have several hundred followers...but for me 100 is a big deal.  I certainly never expected to have 100 people following Gracie's story when I started this blog.  It sort of saddens me that there are 100 people out that follow Gracie's story because they can relate...

Anyway, I think to celebrate that 100 people publicly love my little Gracie, I will have a giveaway!!  Just a little one, but a giveaway, nonetheless.  (Thanks to JenJen for the 100 follower giveaway idea!)  The winner will receive $20 in credit to Small Bird Studio.  You can use it toward whatever you wish...a blog makeover, a signature, a blog button, perhaps something from Franchesca's Flourish shop...

To enter, leave a comment below and tell me what you think has been the most helpful or beneficial about belonging to (or just reading in) the baby loss blogosphere.  I encourage my blogless followers (you know who you are!) to enter, don't have to have a blog to use the credit at Small Bird Studios...   I will leave things open until Friday and announce the winner Friday night or Saturday. 

Also, if you haven't checked out my new blog, take a quick trip over to check it out.   It will be my place for crazy rantings about motherhood and whatever else I might need to rant about.  I also hope to be able to post various information about cloth diapering, nursing, baby products, recipes, etc.  Who knows where it might lead....

Sunday, January 16, 2011

The Shape of You

I have been waiting for this song to pop up on so I can add it to Gracie's music, but no luck.  I thought I would share it here for those who have not stumbled across it yet.  (You'll have to scroll down and stop the music player before playing the video.)

Sunday, January 9, 2011

Prayer Request

Many of us here in this community believe strongly in the power of prayer.  In the last couple of months I have ventured into the world of cloth diapering blogs, and lots of lots of prayer is needed for one of the moms there. 

Her 3 y/o was recently diagnosed with stage IV cancer.  More about their story can be found here and here.  We all know how much life on this side sucks.  Please pray that there will be effective treatments available for little Emily and that her family does not come to know the pain that we know all too well. 

I'm Getting a Package This Week...

...with a new Midnight Orange sculpture!!! I am so excited to get it!!!  I cannot wait!!!  This was my Christmas present to myself this year.  I just got email notification that it is on its way, and a link to a few pics.

Christmas 2010

It's the most wonderful time of the year
With the kids jingle belling
And everyone telling you "Be of good cheer"
It's the most wonderful time of the year
It's the hap-happiest season of all
With those holiday greetings and gay happy meetings
When friends come to call
It's the hap- happiest season of all

Yep.  It absolutely used to be.  And I think that, one day, it will be again.  Thankfully, it is not something that I dread, but right now, it's definitely something that falls flat.  It's just something that falls a little short of wonderful.  It's one thing to accept that, as you become an adult, the 'awe' of the season becomes a little less magical; it's another to accept that any 'awe' that is left once you become an adult will never be the same because your first born will never physically be there as part of your holiday. 

I am growing to accept (but I am not quite there yet!) that most people think they are saying something good when they directly or indirectly reference Gracie.  I make a concerted effort to accept this only because I know that I would still be one of those clueless people unless Gracie had not died.  Had I not been given these shoes to walk in, I would totally not know the right and wrong things to say.

The gist of all of this year's well-intended statements: 'Oh, your Christmas will be so much better this year since you have that beautiful baby.' 

How to you respond to people to make that kind of statement?  For quite a while I have been in a position of not wanting to make people feel bad about not saying the right thing unless, of course, their statement appears to be intentionally malicious.  So you just nod and smile and move on.  You just let it roll of as much as you can.  But deep down inside you know that even in 50 years, although the holidays (all of them, not just Christmas) are better than they were in late 2009 and early 2010, they will never be the way they should be.  They will never be quite right.  Why?  Because nothing in life is the same after your child dies.

Death has a funny way of changing everything for the living.  Certainly, BLMs are not the only people to carry loss in their hearts during holidays and special occasions.  So many people out there carry loss with them; the losses of spouses, fathers, mothers, sisters, brothers, friends.  Others carry the loss of their children with them; these are the people to whom our group can most closely relate.  The difference between our group and the other parents is that most of them have celebrated holidays with their children; they were able to make holiday memories that they can hold onto and cherish until they are with those children again.  Some people make the argument that having a child, making memories and then losing the child is worse than losing the child before any memories can be made.  I suppose the argument can be made for each perspective, but sadly, neither is right and neither is wrong.  My point is the big picture of the world, so many people quietly muddle through holidays with loss nagging at them.  Quietly because the world expects the sharp and profound pain of the loss to just go away after a period of time.

The pain of losing Gracie will never go away, especially since I never had the chance to make any memories with her.  That leaves two options: bitterness that drags down everyone else around me and takes away from the memories that I can create with my living children OR finding a way to channel that pain into something that I can look forward to.  I have chosen to channel that energy into a few things that I (hopefully, we, as a family) can look forward to.

Although I really didn't feel like doing so last year, we did send out Christmas cards.  We included Gracie by creating a label to put inside in lieu of signing the cards; in the background of the label was a set of angel wings.  This year, we did a photo card.  We included Gracie's footprint butterfly that Malory made.  Including Gracie in our Christmas card is something that we will do each year.  Forever. 

Last year's label

This year's card

Last year we decided that we would buy Gracie one or two tree ornaments each year.  Last year's ornaments can be seen here.  We got a few more this year.  (If we keep this pace up, it's going to be hard to find new ornaments in a few years!)

I bought these for each of the girls this year. 

From the Midnight Orange

My dad painted a ceramic ornament for each of the girls this year.

From one of Jeff's good friends

Another tradition that we have started on Christmas Eve, and will likely continue for years to come, is a balloon release.  I used to be diabolically opposed to balloon releases for environmental reasons.  But now, quite selfishly, I look forward to the releases that we do.  My hope is to find a different way to incorporate Gracie and her angel friends onto the balloons each time we do the release.  This year we put angels on the balloons.  

Last year we suggested to our family and close friends that, if they felt compelled to do so, they purchase something that we could donate to Doing Good in Her Name.  After Christmas, we sent this stuff to Kristin and her husband to donate to the NICU/PICU at Connecticut Children's Medical Center.  We wanted to do the same thing this year, but after talking, we realized that we wanted to keep our donation a little closer to home.  So, again we invited family and friends to participate with us in gathering donations for the patients and families of the NICU and PICU at Geisinger Medical Center.  Last week we delivered a large box and two large bags full of donated items!!  Although we don't expect that family and friends will continue to do this with us, I anticipate that this is something that we will do each year. 

Last year Jeff got me a crystal angel bell from Gracie.  I dropped it and broke it Christmas night.  We fixed it and I broke it again.  And then one more time.  I am sure that I don't have to say how crushed I was.  Eventually, we decided to get rid of it, as it just wasn't salvageable.  He replaced it this year and put it up on Gracie's shelf as soon as I opened it.  I just have to make a permanent spot for it now.  

I hope that you all had relatively peaceful holiday celebrations surrounded by loving family and friends, and that you were able to remember your angel in some way as part of your celebrations.  Wishing you all an upbeat and pleasant week.  Much love to you all.

Monday, January 3, 2011

Visit Jen!!

My friend, Jen, is planning a giveaway when Lily's blog reaches 100 followers.  She is reeeealy close to 100.  If you don't know Jen, or have never visited Lily's blog, take a minute to go over to read Lily's story and say hello.