Sunday, October 31, 2010

Appreciation Tea

Well, my speech at the Appreciation Tea went well on Friday.  They had a nice turn out with about 50+ in attendance including the hospital CEO.  We brought one of our framed pictures of Harper with us and sat it on our table and got to show her off a bit. :)  I loved being able to talk about her even though I was in tears before I even began.   It felt great to be able to thank the people who volunteer their time and services to make memory boxes for people like me who expect to leave the hospital with a baby but don't.  Those boxes give us something to hold onto.

As I walked back to my chair after speaking I noticed most of the room in tears, wiping their eyes.  It filled me with such pride to know that Harper's story touched their hearts.  It felt wonderful to do good in her name.  I received a lot of hugs and thanks for being there and having the courage to speak.  One woman told me how brave I was and that she wouldn't have been able to stand up there and speak as I did.  I told her that it is easy to talk about someone you love so much.  Honestly, I wasn't really nervous (maybe a little)...just emotional.  I did it for my daughter.  I don't get to do much for her so I try and parent her in anyway I can.  I have to be her voice.  Harper has made me a stronger person even though I don't feel so strong at times.  I feel her pushing me.  I strive to be the person that she would want me to be - to honor her memory the best way that I can.

Here is my speech...

Good afternoon.  My name is Rhiannon Johnson and I wanted to speak today to share a little bit of the story of my loss and to take this opportunity to pay a very special thank you to the volunteers who provide their time and donations for the bereavement services at the Medical Center.  

I was admitted to the Medical Center in pre-term labor on my birthday. I was 6 months into my blissfully naive and uneventful pregnancy with my first child.  I had no idea that I would be getting discharged 9 days later without my daughter in my arms but instead with a broken heart, shattered dreams and a very special box that has turned out to be one of my most treasured possessions. 

My daughter, Harper, was born on June 25th at 4:39 in the afternoon. She was 1 lb 15 oz, 14 inches long and beautiful.  She had a head of red hair, big hands and her daddy's nose.  Harper was perfect and healthy in every way but she was born too soon.  

I did not come to the hospital that night prepared for what lay ahead of me.  Giving birth to my daughter, holding her in my arms and leaving the hospital without her was an incomprehensible thought.  It never occurred to me that she might die.  She was a strong girl, a fighter.  I just knew that if she came early that she would be one of the miracles. But we didn't get our miracle, she died and our world came crashing down.   I was in shock and very unprepared to say the least.  

I didn't bring any keepsakes with me to the hospital.  No receiving blankets to wrap my baby girl in, no pretty dress for her pictures, no camera.  I didn't know how much all of these things would come to mean to me in the coming days, weeks and months.  Thankfully, you all did.  

Thanks to your generous and heartfelt donations I have a box full of tangible memories of Harper's short life.  I have something to hold, something that she touched.  Keepsakes that are so dear to my heart and that have gotten me through a lot of dark days when I was so thankful to have something that was hers.  Something that acknowledged her short but meaningful life. 

The pain of losing her and all of the dreams we had for her has been unbearable and suffocating at times.  The grief can be paralyzing.  Your kind donations have meant more to me and my husband than I could ever put into words and my road to healing has started in part because of your kindness.  She had a moment in our arms, but will live on in our hearts for a lifetime.  Thank you.

Thursday, October 28, 2010

BLM Therapy

Well, yesterday was so good for my heart.  I got to meet Priscilla, another BLM (baby loss mama) in real life!  When cyber space meets real life it is so cool.  Her and her hubby (and Oba!) just got stationed here, thanks to the Army, and I am so happy to have them :)

We had a wonderful lunch date....just two angel Moms hanging out.  I must say that it was good for my soul to be around someone who is like me, yet different.  I felt understood and accepted.  I loved that we were able to talk about our babies and everything else and it just seemed normal.  I am looking forward to getting the rest of our families together, doggies included, sometime soon.  

As a lot of you know from a previous post I am going to be doing a little public speaking tomorrow at an appreciation luncheon.  It is in honor of the volunteers who put together the memory boxes for my hospital.  I have been a  procrastinator my whole academic life.  My excuse has always been that I perform better under pressure and I guess this is no different since I just finished up my speech tonight.  Since it's about Harper, it is not surprising that it just flowed out of me.  Now I need to rehearse even though I have a feeling that as soon as I stand up there I will just be ad-libbing quite a bit.  Here's to kleenex and water proof mascara.  

I am not really nervous...yet.  I am actually excited to be able to talk about Harper with a room full of women who will most likely 'get it'.  Chances are they have been in my shoes at some point in their life.  So, please send prayers, good karma, and happy thoughts my way tomorrow as I hope to do good by Harper and honor my daughters sweet name.  

Monday, October 25, 2010

Heaven & Signs

Heaven...I think that the idea of Heaven is individual.  Everyone probably has different dreams about what they hope Heaven to be like.  I don't think anyone's vision of Heaven is right or wrong, just personal.  For me, I have never quite been on board with the idea of St. Peter in a white flowing robe standing at the pearly gates with streets of gold behind him letting the forgiven have passage and striking the sinners down to Lucifer in the fiery pits of hell.

Until Harper died, I had never given a ton of thought to what Heaven would look like for me.  I just knew that I as long as it included loved ones who were happy and healthy that was enough.  Maybe it included pearly gates and maybe it didn't.  I don't think any of us will know that for sure until we get there.  Now, I think about it a lot.  I want to know of the place where my baby girl now resides.  Her Heavenly home where she will spend eternity.

Recently, I was reading Life Touches Life by Lorraine Ash.  It is a great book about a Mother's journey to healing after her first and only child is stillborn.  For me, it was a very inspirational read.  As she touched on this topic of Heaven and eternal life, I felt a wave of comfort come over me.  I will share an excerpt from her book that she actually took from John O'Donohue's Anam Cara, a book of Celtic wisdom.

"The dead are our nearest neighbors; they are all around us.  Meister Eckhart was once asked, Where does the soul of a person go when the person dies?  He said, no place.  Where else would the soul be going?  Where else is the eternal world?  It can be nowhere other than here.  We have falsely spatialized the eternal world.  We have driven the eternal world out into some kind of distant galaxy.  Yet the eternal world does not seem to be a place but rather a state of being.  The soul of the person goes no place because there is no place to go.  This suggests that the dead are here with us, in the air that we are moving through all the time. The only difference between us and the dead is that they are now in invisible form.  You cannot see them with the human eye.  But you can sense the presence of those you love who have died.  With refinement of your soul, you can sense them.  You feel that they are near."

I have always felt that souls are all around us in a way but didn't know how to articulate it properly.  I think that this passage does so perfectly.  They are in the wind, the stars, the trees, the ocean.  I truly believe that our loved ones are with us even in death sending us signs showing us that they are never far from us.  I believe it because I have witnessed it.  I do feel Harper with me and maybe that is her Heaven, to be here with her parents who love her and miss her so deeply.

On the day that Harper was born we received a beautiful gift and sign from her.  It was in the photos taken by the hospital photographer.

The photographer assured us over and over that she did not pose Harper's hand.  Chris being an orthopaedic surgeon said that there aren't any ligaments in the hand that would involuntarily make the "i love you" sign.  That this must be some divine intervention.

It gets even more special.  Through out my pregnancy with Harper, Chris would make that sign with his hand and put it on my belly at night before bed or when we were just hanging out on the couch.  That has always been our 'thing', even before I was pregnant.  When ever we would bid each other farewell, we would hold up our hand to give off one last silent "I love you".  It turns out that Harper knew her Mommy and Daddy well.  I think that would make even a skeptic believe in signs...

I posted this quote a couple of posts ago but felt it was very relevant to this post also...

"And if I go while you’re still here…
know that I live on, vibrating to a
different measure behind a thin
veil you cannot see through. You
will not see me so you must have
faith. I wait the time when we can
soar again, both aware of each
other. Until then, live your life to
its fullest, and when you need me
just whisper my name in your
heart…I will be there."
-Author Unknown

Saturday, October 23, 2010

Defining Moments

So, I feel that in the last couple of days I have turned a corner.  Anyone who has experienced grief knows it comes in waves, so I am hoping that I won't be making a U-turn anytime soon.   I have felt a little more peace in my heart as of late and I am not really sure what the turning point was -- or if it was even a true turning point.  It could have been just a string of good days.

Grief is consuming and I have definitely been letting mine consume me.  I feel like I have been stumbling around in the dark without a lantern, fumbling through my days.  Lost.  My anger, my sadness, my bitterness -- my spirit and my heart have been shattered and I have just been trying to figure out how to pick up the pieces.  I have been wallowing in the pits of despair, the hopeless, miserable pits for almost four months.  Wow, it will be four months on Monday.  I truly never thought I would or could survive this long without her.  It's not that I am letting go of my grief, that isn't possible....I will always grieve for her.  I will always miss her.  Seeing newborn babies makes me sad and probably will for some time.  A piece of me will always be missing.  She will always be missing and with every ounce of every fiber in my body I wish she were here with us.  My heart will always be scarred and bruised.  With every laugh or piece of happiness that I feel there will always be sadness lurking close to the surface.  Grief will always be present.  I just need to learn to navigate through it.  To live with it.  To Live.

I have been letting my grief define me.  I have let myself go and it is time to get off my miserable rear and try to walk forward.  Even if it only one step at a time.  I know I will take steps backward from time to time and I will fall down but I will stand back up.  I can't keep letting my grief keep me down.  I have so many reasons to keep living.  I have been blessed with a husband who I surely don't deserve, he is my  Prince Charming...always has been and always will be.  I have a family (in-laws included:) who love and support us no matter what...who have been here for us, every step of the way.  I have sweet friends who check on us often and let us know that Harper is not forgotten.  Zeus and Luna, who's unconditional puppy love warm my heart on even my saddest days.  And of course, my most precious blessing, my Harper, the sweet little girl who made me a Mommy -- a tiny baby who taught me so much more about love and devotion than I ever could have understood.  A little girl who will always hold the most special place in my heart and will always remind me how fragile and precious life is and how important it is to embrace it despite all of the bumps in the road.

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.”  ~Anais Nin

"Motherhood is a state of both the mind and the heart, a sacred place that is yours no matter the distance between you and your child. Not even Death can take it away." ~ Dr. Joanne Cacciatore

Monday, October 18, 2010

A Loss Not Forgotten

On October 15th we went to A Loss Not Forgotten, a remembrance ceremony hosted by the hospital where Harper was born.  It was put on by the Parent's Advisory Council and they did a very nice job.  My Mom joined us and we met Chris's parents there.  We all walked in together and signed in.  The receptionist asked me if I was 'Mom'?  Are you Mom?  That's not something that I get asked very often, not ever actually.  I like being called 'Mom'.  That's when the tears started and they didn't stop until the program was over.  I answered, "yes" and signed in.  She handed me a program and a bookmark and told me to take a rose of the appropriate color once inside the reception area.  

Inside the program was a list of the different types of loss and the color of rose to take.  For me: Miscarriage...Coral Rose & Preemie born between 23-34 weeks...Lavender Rose.  I had two roses and my heart was just broken.  Two roses. Two losses.  They started with a nice introduction and guest speaker.  I don't remember much of what the guest speaker even talked about but he closed with a lovely poem about the living with the loss of a child.  I can't even remember much of the poem but I do remember it saying that our children live on through us and they will always live on in our hearts.  I really felt comforted by his words.  

Then the rose ceremony.  The social workers stood up and started reading a description of each type of loss and when they were finished reading we all repeated the words, "We Remember".  And then the Moms and Dads of the babies in that particular category walked to the front of the room and put their rose in the vase.  They read narratives for Miscarriage, Stillbirth, Preemie born before 23 weeks, Preemie born between 24-34 weeks, Full term birth, and SIDS/infant death.  The narratives were just beautiful.  I could tell that the women reading them had either experienced that type of loss or had spent a lot of time with someone who had.  There were so many mommies & daddies with roses.  So many babies taken too soon.  So much loss.  So many tears.  As we put our rose in the vases, we were given a yellow rose, a HOPE rose.  

Then the slide show of names.  All of the sweet names of our babies.  The tears were drying up a bit until Harper's name came on the screen...

Harper Grace Johnson  
June 25, 2010 

There it was, our sweet girls name.  It was like a knife in my chest, it hurt so bad.  I just put my head on Chris's shoulder and sobbed and I saw that he had tears in his eyes, too.  He misses her so much, too.  I loved seeing her name up there though.  I always love seeing her name.  I just stared at the screen, I didn't want to miss seeing her for even a second.  She is our baby and very much with us, if only in our hearts.  

There are so many other babies that were not listed on that slide show that were being remembered that night also.  Babies of all the sweet mamas I have come to know here.  Jacob, Kai, Drew, Charlotte, Peyton, Riley, Lily, Bailey, Laken, Kennedy, Josey, Oliver, Stevie, Mikayla, Audrey, Aidan, Stella, Olivia, Kenny, Liam....the list goes on.  So many heartbroken parents that are missing their children every minute of every day. 

I was so sad thinking that we, as parents to angels, don't get to do normal parent things.  No soccer games, no dance recitals, no PTA meetings, no play dates, no volunteering to be the 'homeroom mom'.  We get to attend memorial ceremonies, butterfly releases, balloon releases, memorial gardens, and walks in honor of our children.  Our children may be gone but they will live on through us, we honor them by living our lives and by doing all of the things that they will never get to do.  We will speak their names, we will remember them, we will honor their memories in any way that we can.   We wanted so much for our children but this is all we have....Love.

"And if I go while you’re still here…
know that I live on, vibrating to a
different measure behind a thin
veil you cannot see through. You
will not see me so you must have
faith. I wait the time when we can
soar again, both aware of each
other. Until then, live your life to
its fullest, and when you need me
just whisper my name in your
heart…I will be there."
-Author Unknown

Sunday, October 17, 2010

Field of Dreams

I had a dream about Harper last night.  I rarely dream about her.

I was walking by myself along a path in a field surrounded by a thick forest of trees.  As I was walking, I heard the voice of a little girl yell out, "Mooooommmmyyy".  I started to looked around for someone else...some other mommy.  Then I realized it was her, my sweet angel.  A ginger haired little girl of about 4 or 5 came running out of the woods as fast as she could toward me, her mommy.  She had her curly hair pulled back in two barrettes and she was wearing a white dress to her knees.  I scooped her up and hugged her so tightly and I swung her around and around.

Then I woke up.  I tried so hard to go back to sleep.  Tried and tried.  I wanted more.  More dream that included me and Harper together.  Of course because I was trying so hard it just woke me up more.  I just lay in bed sobbing.  I miss her so much.

I have relived that dream in my head so many times today.  Feeling happy and sad.  Happy because Harper was paying her Mama a visit and I got to see her, hear her voice, hug her.  Sad because the only way we will ever be able to visit with each other is in my dreams.  It has me wondering if I will ever be called 'Mommy' in real life.  Will I ever hear the sweet sound of a child's voice call out for me?

Trust in dreams, for in them is the hidden gate to eternity.  
Kahlil Gibran

Friday, October 15, 2010

Today & Always...

Please take a moment today to light a candle, say a prayer, and remember Harper and all of the sweet babies that were taken way too soon.  We remember them today and always...

Monday, October 11, 2010

Pity Party

I feel like I have been having a major pity party for the last three months.  Feeling sorry for myself and wanting the one thing in life that I don't have.  I feel like I am in limbo or purgatory, even.  Just waiting to find out if I am going to heaven or hell.

I don't do much.  I hang out with my wonderful husband who doesn't ask much of me because he knows that I am not really up for too much.  And if it weren't for him I am not sure I would have even survived this far.  He is a wonderful, understanding, loving man. I play with my dogs, all they expect is a walk or some fetch in the backyard and they are happy.  I work part time.  I don't really love to go out in public because of all the triggers that present themselves.

I spend hours on my laptop.  Blogging, reading blogs of others, googling stuff.  Actually, if I had to make a list of my hobbies, 'googling' would probably be right at the top of the list.  I have been thinking about something lately.  What am I trying to find?  What answer?  An answer to why my life has taken this turn?  An answer to why my daughter died?  An answer to why so many people that seem so undeserving of parenthood get it handed to them with no problems?  I don't know what I am looking for.  Maybe I am hoping to find something online that will tell me it's not my fault.  Something that reads, "you will have a happy ending one day." Or maybe, something that says, "go look in the back of your closet, a hooded woman crept in during the night and decided to give Harper back to you."  Who knows what I am looking for.  Maybe a little peace.

Last month I was actually feeling better.  I had a reason to.  Or so I thought.  With a blighted ovum something happens during cell division and the embryo aborts very early on.  Does that mean there was never even a baby? Was all that 'feeling better' in vain?  I have been knocked back down; so hard that I am having a hard time finding the strength to even make it to my knees.

This miscarriage is just a harsh reminder of why I was even able to get pregnant in the first place.  Because my daughter was born three months early and died.  It is a slap in the face telling me I am no closer to having a baby in my arms now than I was before.   It all goes back to Harper.  She is supposed to be here now, keeping her parents up at night and filling us with so much joy that we just about burst.

I don't mean to be such a "Debbie downer".  I know I have so many blessings in my life.  I have so many things to be thankful for.  Maybe I am selfish but I want more.  Just this one last thing and maybe, just maybe I will be satisfied.

Thursday, October 7, 2010


I have some news to share but let me start from the beginning.  We went out of town for Labor day weekend and I was expecting AF (aunt flo) to show up that weekend.  When she didn't I started thinking maybe I was...and I tested to see if I was...pregnant.  Much to my surprise it was positive!  I didn't believe it though.  Of course, I immediately started crying.  I felt like I was betraying Harper.  I was still supposed to be pregnant with her.  Not peeing on a stick to see if I was pregnant again.  I took about 4 more tests just to make sure.

I just couldn't believe that a couple who struggled for over two years to get pregnant, who were two weeks away from starting fertility medicine for IVF when they found out they were pregnant for the first time could possibly get pregnant the first month out of the gates.  Of course I was happy but I was a worried, too.  I was worried that it was too soon.  I called Dr. I that day crying, needing some reassurance that it would be OK.  And of course, she was there with lots of it.

I knew that any subsequent pregnancy after Harper wouldn't be easy.  And it was so soon, it had only been a little over two months since Harper died.  I was scared to death.  Petrified.  Apprehensive.  What if it didn't work out again?  What if I had to bring home another memory box instead of a baby? Another urn.  The dark questions were never ending.

After about a week, I calmed down.  I wasn't as scared.  I felt peaceful and happy.  We had a plan in place and I was feeling good about this baby, this new life that was making a home inside my womb.  I was excited.  I had hope again.  Hope for a rainbow after the ugly, dark storm that we have been living.  I knew Harper was happy too; happy to see her Mommy and Daddy smiling more and feeling hopeful for the future once again.  Maybe this is just what we needed, maybe it was a blessing sent down from our Harper.

Five Tuesdays ago, our life was changed again as soon as we saw that positive test result.  For the good this time.  We were thrilled!  Maybe we would have our happy ending after all.

Then, this past Tuesday our happy news turned to devastation.  We went to the doctor for what was to be my first OB appt, I was 8weeks and 1 day pregnant.  We went in for an ultrasound and all of the initial stuff.

I was crying before I even got on the table for my ultrasound.  I felt like I was having a panic attack, my limbs were heavy and I was scared.  My mind raced back to all of my ultrasounds with Harper.  I missed seeing her dance around on that screen.

I was so scared for this baby.  I really had no reason to worry, my first trimester with Harper had been flawless.  But still, I worried.  I always worry.  What if we didn't get good news?  What if there was no heartbeat?  I have read so many stories of mommas that have been given the devastating news that their little one has no heartbeat on the ultrasound.

I slid down the table to get in good position for the ultrasound and she started to look around.  I could see on the screen for myself.  A big empty sac.  No baby inside of it.  I was measuring 5 days behind my dates.  She kept looking around and then she said it..."I am sorry, sweetie but there is NO baby."  What?  No baby?  How could this be?  I have been tired, sick, hormonal.  There had to be someone in there causing all of these wonderful symptoms.  My hcg levels had been doubling appropriately.  There had to be some mistake.

The ultrasound tech went out to get my doctor.  When the Dr. I came in she gave me a hug, told me how sorry she was and told me this is what's called a blighted ovum.  Something else I have never heard of.   I have learned about more bad things involving pregnancy in the last few months than anyone should ever have to know about in their lifetime.  Dead babies being #1 and now a blighted ovum pretty high on the list.

Basically something happens after implantation during cell division and the baby aborts spontaneously.  Most likely due to some chromosomal abnormality.  The baby aborted but, apparently, my brain didn't get the memo.  It still kept doing what it was supposed to do to sustain a pregnancy.  Making a placenta that wasn't nourishing anything except my morning sickness.

What a cruel, evil uterus I have.  To evict another tenant.  To keep all of her stuff so it seems like someone is home, but in actuality, she moved out weeks ago.  I have been walking around thinking I was pregnant, my body acting pregnant, thinking up more dreams for the future and now I have had the rug pulled out from under me again.  Another loss.  Another baby gone.  Two losses within four months of each other.

My body had no signs of a miscarriage. No cramps, no heavy bleeding.  Dr. I said it could take my body weeks to "expel" the uterine contents on it's own.  We opted for medicine to get the miscarriage process started before an infection sets in or I get too far along that I need a D&C.

I am now what is referred to in the medical world as a Gravida: 2; Para: 0.  That means two pregnancies, no living children.  That sounds terrible.  What is wrong with me?  I feel defective.  I feel like I will never have any living children.  I feel like people are looking at me and wondering why I am having trouble keeping my babies alive.  This is just another reminder of how unfair and unexpected life can be.  Like I really needed another reminder.  I wonder if I will ever have my happy track record isn't looking so good.


A dear friend of mine, J, sent me an excerpt from this mommy's blog.  I wanted to share it because I think it is the perfect description of what grieving a child feels like.  To me, anyway.  

"grieving any loss, really is not a black and white matter; it's not either/or, but both/and. I can trust that he's in heaven and rejoice in that, and I can acknowledge that we will be feeling the loss of him acutely for a long time -- probably our whole lives. I can rejoice in the truth that he is not suffering anymore, and weep bitterly over the reality that he isn't with us, that we did not get nearly enough time with him. I can be happy that he doesn't have to be sliced or poked or taped or stitched ever again, and desperately ache for him to be back here with us. One reality doesn't cancel out the other. We hold them in tension, with all the uncomfortable complexity and unfathomable mystery that such nuances create."

I have had conflicting thoughts like this so many times.  I know Harper is in heaven and never suffered a day of her life.  I know that all she ever felt was love in her little lifetime.  These things do give me peace when I think about them.  I also know that I miss her more than I could ever put into words.  That I  would do anything to hold my baby again.  That I wish she was here.    

Sunday, October 3, 2010

Balloons For Harper

As most of you know, Thursday was Harper's due date.  I just wanted to extend my thanks to all who emailed, texted, sent cards and gifts. The fact that so many remembered her due date is truly beyond words.  Your thoughtfulness has been a gift.  Thank you so much for your love and kindness on such a tearful day.

The weather was beautiful on Thursday.  It was a crisp, cool, partly sunny fall day.  I thought that it might rain and actually thought a gloomy day would have been appropriate considering the sadness in our hearts.  But I am glad that it turned out to be a lovely day to honor our daughter.  It was perfect.

We knew it would be an emotional day so Chris and I took the day off work just to be together and remember our little girl.  We decided to do a balloon release in our backyard by Harper's dogwood tree.  We released six pink balloons.  We spelled out H-A-R-P-E-R; one letter on each balloon and wrote a little note to her on one of the balloons.  The sky was dark as we released Harper's balloons and soon after we set them sailing the dark clouds floated away and the sun peaked out for a bit.  It was like she was smiling down on us, not wanting us to be so sad.

One got away early

There they go...flying high

Floating away...

Considering the circumstances, I think we did pretty well.  I am not sure how this grief process will work now that I am no longer supposed to be pregnant.  I am trying desperately to find some peace but the last couple of days have been hard.  We should be moving on to the next phase of parenting.  Moving on from pregnancy milestones to growth and development milestones.  Now we are supposed to be sleep deprived, smitten parents to a brand new baby girl.  Next year, should be-parents to a baby that is starting to crawl, walk, talk, etc.  Instead we are parents who continue to work through our grief.  Putting one foot in front of the other.  Just trying to figure out how to exist in this life without her.