Thursday 20 October 2016

Day 20: Gratitude| Capture Your Grief 2016

Throughout this whole experience of miscarriage, stillbirth, and infertility, what I am most grateful for is support.  Mark's support, family's support and support of friends.  I feel so lucky to have a support system around me that not only allows me to grieve in the way I need to but supports me in that.

I cannot tell you how many women I have met who have had people write mean, insensitive things to them on facebook after the loss of their child.  Some women have even told me of their family photos (like what is currently my profile picture, of Mark and I holding Elisa) being reporting as inappropriate on facebook and having it banned.  I really can't put into words how grateful I am for the support we have received. Every note, every "I am thinking of you" every article you send really does mean the world to me.

THANK YOU

Saturday 15 October 2016

Tuesday 11 October 2016

Day 11: Creative Heartwork | Capture Your Grief 2016

11. CREATIVE HEARTWORK 

Shortly after Elisa died, I made this shadow box of her things from the hospital.  It is now displayed in our front room along with the rest of our family pictures.


Monday 10 October 2016

Day 10: Symbols & Signs | Capture Your Grief 2016

10. SYMBOLS + SIGNS



Luca Star and Elisa, our little baby beluga <3





See here for more whale sightings http://adventureswithbabybeluga.blogspot.com/p/whale-sitings.html

Saturday 8 October 2016

Day 8: Beautiful Mysteries | Capture Your Grief 2016

Both of my girls are mysteries to me. I got to know Elisa's personality more than Luca's because she was with us longer. I know Elisa as a spunky, "fighter" or she would not have made it as long as she did. Luca however, I don't know much about her at all.

I wonder every day what my girls would be doing if they were alive. How my life would be different with them here. How our house would be full of laughter, screams and crying and running and chaos.

How different would my life be if I had a 3 year old and a One and a half year old....

Friday 7 October 2016

Day 7: Myths | Capture Your Grief 2016


Myth - grief is linear and you work through each step chronologically

Truth - grief is a mess, there is no correct path, and you don't work your way through it step by step.  One day you may be "far ahead" on the grief path and the next day you may be flung to where you were 6 months ago.  Grief is a journey, grief takes work, grief is unique AND grief is not bad, it is the price of love, and I would never give up my love for my children, even if it meant I didn't have grief



Tuesday 4 October 2016

Day 4: Support Circles | Capture Your Grief

Capture Your Grief Day 4 - Support Circles.


For today's post, I send you to my Resources List. This is a compilation of all the websites, books, and support groups that I have found helping on my journey through miscarriage, carrying to term despite a fatal diagnosis and stillbirth.

Monday 3 October 2016

Day 3: What it Felt Like | Capture Your Grief 2016

This one is a little too hard for me to write about right now, I just don't feel I have the emotional capacity. So I am going to take a little different approach.  I find so many people don't quite understand what stillbirth is, they assume it is the same as a miscarriage (please don't get me wrong, having had a miscarriage, I know they are incredibly hard, emotionally and physically) but they are different. Stillbirth includes labor at a hospital, and all of the things that come along with a full term birth of a healthy take home baby, it's just that instead of taking home a beautiful baby, you are left empty handed and with such much grief.


So here is what stillbirth felt like:

There should be no possible way that you could feel this much emotional pain, when they tell you your baby's heart has stopped.

That there shouldn't be a world where a parent's heart continues to beat after their child's has stopped

A nightmare walking into the labor and delivery department, where everyone is brimming with joy, excited to meet their new addition, when you already know yours is gone

Agony and guilt when you are in anipartum being induced, and you hear the heartbeat monitor of baby of the woman on bedrest in the room next door. Guilt that you just want the noise to stop, knowing full well it is not that woman's fault your baby has died. But agony hearing the sound of a living child's heartbeat amplified, seeming to rub in the fact that you will never hear that sound again from your own beautiful child.

Intense pain as contractions start

Confusion as you go thorough your mind all of the steps you learned in labor and delivery class, but that you never in a million years saw you needed these classes for this

Emptiness and anger as the high risk doctors treat you as a medical experiment, seeming to act differently toward you because they don't have a living child to worry about

Nausea as contractions become Stronger and closer together

Panic as you realize they are now 30 seconds a part, and that this is going to happen soon

Sadness, joy, pride, nearly every emotion possible when your daughter is finally born.

Silence, so much silence when you hear no cry, not that you were expecting it, but it becomes even more real with the silence

Bitterness with the Doctor cuts the cord when you specifically said you wanted your husband to do it, just as if your child had been living

So much joy and so much sadness as you hold your precious daughter, but knowing she is already gone.

Awe and pride at her perfect little body, 10 toes, 10 fingers, her daddy's nose.  

Love, so much love for your beautiful daughter

Like time stands still as you hold her, but like it is simultaneously going too fast knowing this is the only time you have with her

Utter despair as you walk out of the hospital room knowing you will never see or hold your baby girl ever again.  That you walk out of the hospital with no baby to take home

Excruciating pain as your milk comes in, and you become engorged because there is no baby to feed, no way of relief

More anger and despair that your body does not seem to know what has consumed your heart and mind, that your baby is dead.  But the body mocks you by producing more milk for a baby that will never be here.

Shock, disbelief and sorrow as you plan and attend the funeral for your baby girl

Desperation that this must be a horrible nightmare, when you bury your baby 6 feet underground in the cemetery

A haze as you attempt to continue living when your child has died

Sunday 2 October 2016

Day 2: Who They Are | Capture Your Grief 2016

2. WHO THEY ARE | Share about your beautiful children today. Who are they? When were they born? How long did you have them for? What is their name? 

-----

Elisa Josephine, stillborn at 7 months January 2015. She was our "little baby beluga". She had her daddy's nose, ten perfect little toes and ten precious fingers and such a fighting spirit. I could not imagine the grief and pain that came with losing her. She was our hope, our rainbow baby after losing Luca, but she couldn't stay. The little time we had with her at the hospital are some of the hardest but most treasured moments of my life. 

Luca Adriana, miscarried august 2013, she was more of a mystery, here with us for 12 short weeks but forever in our hearts. We don't really know if she was a he or a she because we lost her before we knew, but Mark and I both had a strong feeling she was a girl. We named her Luca Adriana because Luca means light, and Adriana means darkness. So much light and love in the time we had her and so much sadness and darkness in losing her.




 

Saturday 1 October 2016

Day 1: Sunrise | Capture Your Grief 2016

Capture Your Grief Day 1: Sunrise

Starting off the first day of Pregnancy and Infant Loss Awareness Month with a beautiful sunrise. My first thought every morning and last thought every day are my children who are not here. But I try my best to live each day in their honor ❤

Wednesday 28 September 2016

Well hello again

It has been quite a while since I have written here.  There are a lot of factors that have gone into that, perhaps due to summer mind - taking a break, partially that our journey through infertility is actually harder for me to write about than my feelings of grief and loss with Elisa and Luca, and most importantly because the ultimate goal of this blog was/is to help me process through my grief, and for the last few months writing hasn't really been what I've wanted to do. So I didn't do it.

Learning to take care of myself you could say is one of the "positives" that have come out of the mess that is child loss.   Of course, like you hear many loss parents say, I would give back any progress to have my children back, but I thank Luca and Elisa every day that if the can't be here, that they have left me with the gift of their love, through self-care. I have learned that grief changed me and will continue to change me. And how I feel or what works for me right now might be completely different than it was two months ago, and again might change in another two months. And that is OK

So over the last few month's I have written.  But now I feel like writing again.

We are coming up on October, pregnancy and infant loss awareness month.  And I look back to the last October when I participated in the "Capture Your Grief Project"  That was an incredibly helpful and healing process for me.  To talk about my babies, but also to have focused prompts on what to write and think about that.

So with that, I plan to be involved again this year.

I can tell you already, I know this year will be different.  Last year I was still very much in the phase of early grief.  The sadness literally engulfed me. I needed to do the project. I NEEDED to talk about my girls and I needed to talk about my pain.

This year I go into it with a different mindset.  Don't get me wrong I still miss Luca and Elisa every day, and I still wish every single moment that things had gone differently, but my grief has changed, and I imagine, if I decide to do this project again next year, it will change again.

So with that, I dust off my blogging, and you can look forward to some more consistent writing from me, at least through the month of October :)


The Capture Your Grief Project will begin October 1. Head over to Carly Marie's Project Heal to see more details

http://carlymarieprojectheal.com/capture-your-grief-2016



Tuesday 10 May 2016

University of Washington Pregnancy Loss Study


One in 4 pregnancies ends in miscarriage, and one in 160 ends in stillbirth. According to the CDC 24,000 babies are stillborn in the United States every year.

Although some pregnancy losses can be caused by known genetic issues or birth defects, very often, as it was with both of our losses, a cause is unknown,

Along with awareness around pregnancy loss, research is another thing I have become very passionate about.

With that, I wanted to spread the word about a study occurring at The University of Washington. Their goal is to investigate any links in pregnancy loss with the hope of being able to provide answers to couples in the future.

For anyone who is interested in joining the study, please see details below, or reach out to me with any questions:

University of Washington - Division of Medical Genetics: Pregnancy Loss Study

You may be eligible to participate if :
  • You have had 2, or more, first trimester losses OR 1 or, more, loss(es) after 12 weeks
  • Your most recent loss has occurred after 2010
Participation requirements:
  • Take an online survey about your pregnancy losses for data gathering
  • One-time review of your medical history (via phone) with research lead
  • Provide a DNA sample to the study (blood or saliva).  
    • You don't need to be in-state! Kits will be provided and can be mailed, no travel or meetings are necessary.
    • It is best if both male and female partners are able to provide a DNA sample, but we know sometimes that is not possible.  If that is not possible, the researchers will request that other family members (grandmother/grandfather of baby) enroll so that a history can be created
  • Information will be kept secure for use only in the study
  • There is no cost to participate
If you are interested in participating, please contact PregLoss@uw.edu or call 206.685.4530.

Please also feel free to reach out to me directly with any questions.  I have been working directly with the research lead to help get the word out to get more participants.


--The brochure from the UW research team is below for reference---



Sunday 8 May 2016

Once a Mother, Always a Mother

Mother's day this year was hard.  Last year I escaped from it all. I was literally  miles away, sheltered from social media and hallmark adds, on a  plane in transit to Ireland.  Mark and I took that trip last year as a way to get away from it all and we strategically planned to leave on Mother's day.

This year was hard. As much as I would like to be able to be on a plane to Europe, it is not feasible, both emotionally, and financially to hop on a plane every time I want to avoid a date....although that would be nice :)

So this year I was forced to face the day head on.  There were parts that were wonderful and parts that were downright hard.

A few weeks before Mothers's day one of my baby loss friends and I had tried to decide what we wanted to do to get through the day.  She was wonderful and invited Mark and me over to brunch with her and her husband.  We could be together, with no need to pretend to be happy, but also, neither of us had to just hide at home alone.  Misery loves company, right?  And we thought it was nice to give our husbands a break. They have been so supportive of us, it would be nice for the boys to talk, and for us girls to cry and talk through all of the motions of the day together.

It was nice to have something planned, but also know that if either of us didn't feel up to it last minute, we could cancel on each other and there would be no hard feelings, only love and support. It was a wonderful way to spend the day.

The hard part, however, was waking up on Monther's day, remembering the past Mothers days, and the number of years I have been saying "next year must be better"

Four years ago, we were a few months into our journey of trying to grow our family.  I thought I was certain to have a child (and of course it would be a living child) by the next mother's day.  After all, it seemed that is how it worked right? You tried, and you got pregnant and you had baby.  I expected to have a child BORN by the ext year, not that I would "just be pregnant" and I certainly didn' think that pregnancy could end.

Three years ago we gave Mark's mom a mother's day card telling her she was the best grandma, as we announced to her we were pregnant with Luca....3 months later, Luca was gone

Two years ago, I woke up early.  We had been trying for nearly a year after losing Luca, and I though, maybe it would be a turning point, a sign, that maybe I could find out I was pregnant on Mother's day...but nope, another negative test.  Now I avoid testing on important days like that, knowing full well I am likely to be disappointed.

One year ago, I was newly bereaved again. Elisa had died just three and a half months earlier.  I was still living in in the haze of new grief,  and trying to navigate in a world without two of my children. But, in some way, I still had the hope that by the next year I would at least be pregnant again.

But here I sit, on my 5th Mother's day since trying to grow our family, still with empty arms and an empty womb. My life is filled with doctor's appointments and unanswered questions as I navigate this world of "unexplained infertility and loss"

Despite the sadness of this year, and feeling like I just keep getting hit down over and over again, I am so grateful for the support I have received.

The text messages, facebook messages and emails acknowledging me as a mother, and thus also acknowledging my children, filled me with joy.  I found some people were not sure what to say to me, that they were worried about reminding me or offending me.  Although today was not necessarily a "Happy" Mother's day, being wished that by anyone actually helped me (I know other loss moms feel differently,  and if you know other loss moms, maybe ask them how they want to be aknolwgeded).  And those who acknowledged the complexity of this holiday brought me even more gratefulness and joy.

I am incredibly lucky that I have the support from friends and family that acknowledge me as a mother, And to all of you, thank you from the bottom of my heart

Wednesday 9 March 2016

See you again

I have heard the Song "See You Again" on the radio a lot recently. The version I have heard has always been the one with  Charlie Puth singing, and Wiz Khalifa adding rap verses. So I had only ever heard the refrain.

"It's been a long day without you, my friend,
and I'll tell you all about it when I see you again.
We've come a long way from where we began.
Oh I'll tell you all about it when I see you again."

I've loved that refrain but haven't really been able to connect with the rap verses. They were written specifically for the Furious 7 in tribute to Paul Walker so they were more about friendship, and the celebrity lifestyle (all the planes we've flew...brotherhood comes first etc.)

Then last night on the radio I heard another version, with sung verses from Charlie

And oh wow has it hit even closer to home. Especially this line:

"I know you're in a better place and it's always gonna hurt.
Carry on, give me all the strength I need.
To carry on."

So for other's who haven't heard the original, here it is, and the beautiful lyrics:


Charlie Puth - See You Again - Original Charlie Puth (no rap)


It's been a long day without you my friend,
and I'll tell you all about it when I see you again.
We've come a long way from where we began.
Oh I'll tell you all about it when I see you again.

Why do you have to leave so soon?
Why do you have to go?
Why do you have to leave me when I needed you the most?
Cause I don't really know how to tell ya without feeling much worse.
I know you're in a better place and it's always gonna hurt.
Carry on, give me all the strength I need.
To carry on.

It's been a long day without you my friend,
and I'll tell you all about it when I see you again.
We've come a long way from where we began.
Oh I'll tell you all about it when I see you again.

How do I breath without ya?
Feeling so cold.
I'll be waiting right here for ya till the day you're home.
Carry on, give me all the strength I need.
To carry on.
So let the light guide your way, hold every memory as you go.
And every road you take will always lead you home.

It's been a long day without you my friend,
and I'll tell you all about it when I see you again.
We've come a long way from where we began.
Oh I'll tell you all about it when I see you again, when I see you again.
When I see you again, see you again.
When I see you again

Wednesday 20 January 2016

Happy Birthday Elisa

Happy Birthday Elisa. I cannot believe it has been one year since we said hello and goodbye to you. That day simultaneously feels like yesterday and decades ago all at once.

I remember holding you, your perfect 10 toes and 10 fingers, your daddy’s nose, just like it was yesterday. My heart overflow with love and joy thinking of that very short time with you. Although it was agonizing and hard, knowing you weren’t alive, I had and still have all the feelings of a proud momma holding you that day.

Thinking of what we have been through, what has happened since we lost you is what makes it feel like an eternity has gone by. Although my grief is not “Over”, it will never be Over I can look back at the last year and see the progress I have made to take on the grief, make it part of who I am, and integrate it in to my life and I owe so much of that to you. You, my dear, fought and held on much longer than any of the doctors thought you would. You held on for 10 more weeks after they told us you might leave us any day. You were a strong fighter, and I continue to fight in this life because of your fighting spirit.

But those first few months without you were agonizing. I couldn’t get out of bed for days, weeks. From the physical pain of your birth, and from the emotional pain of losing you. That time was a blur, a dark haze of the shock of grief. Other than your birth and your funeral I don’t remember much of January. A coping mechanism I guess.

As time went by I was forced to return to “normal life” Going back to work, social outings. But nothing was normal anymore. I didn’t feel comfortable in my own skin. I was walking around and living in a world where you should be alive and with me, but you weren’t. Small talk and social outings seemed useless. How could I talk about the weather when I felt like my heart had been ripped from my chest and lie broken on the floor.

Months went by, and there were many, many nights that I cried myself to sleep. Deep guttural sobs, begging that this was a nightmare, that I would wake up and you would still be there, but no

More months went by and we started more and more adventures with baby beluga photos. Our way of continuing your legacy. A way of journey and documenting our grief, and I way of making the world know you and your sister were real, are real, and will forever be our beloved children.

Now the evenings of deep despair are farther and farther apart. I still miss and think about you every. Single. Day. The thoughts now lean more toward the beautiful life you had for the 7 months you were here, and less toward the deep pit of grief. But I am still sad, and I think I will be every day. Every day I think of you and I am happy, I am sad. I am proud and I am humbled that I was chosen to be your mommy.

You help me to know I can do anything, because through you I have loved more than I ever thought possible and I have endured more pain than I ever thought possible. And I would do it all again to have one more moment with you.


On our trip to Sequim we lit a lantern in your honor



Sunday 17 January 2016

The Body Always Remembers

I remember when I was younger and learning to play the piano, I would practice small measures over and over again, to get the notes in my muscle memory.  So each hand could play independently. but together without thought.  To this day I can still sit down at the piano and play Fur Elise without even thinking.  The body always remembers. The mind can try to re-work, or even try to forget, but the body remembers.

Body memory is something that I have heard a lot about in the loss community. It happens very often after a loss. And I had it too. The weeks and months after Elisa was born still, the phantom kicks I would feel reminding me of what was, what should have been

What I wasn’t prepared for was the body memory that would come around at important dates and anniversaries. I have been preparing for a while that this week would be hard. Elisa’s “first birthday” is on Wednesday. I knew January would be hard, I knew this week would be hard and I knew the actual day would be hard. I took her birthday off of work, and Mark and I even got away this weekend for a little trip to Sequim, where “adventures with baby beluga” began

I knew this time would be hard, but I figured it would be for the typical grief ways. What I wasn’t prepared for was how it would swing me back to the ways I felt shortly after her death.

After Elisa was born I had very strong PTSD. It is common after the loss of a child. I was jumpy, skittish. I couldn’t be in places with loud noises. The noises would leave me in a panic, overwhelmed emotionally and I would break down. I stopped going to sounders games because the sound and the claustrophobia of the crowd was too much. I declined events where I knew there would be loud noises. At work when someone would come to talk to me at my desk, I would jump, my heart would start racing and it took everything to hold myself together.

Over time, and with the help of my counselor, I have come very far in my recovery from PTSD. There are still times when a loud noise scares me, but I am able to rationalize it, and it doesn’t make me come unhinged…

That was until just the last few days. I can only attribute it to the fact that we are coming up on Elisa’s birthday and like I said, the body knows, it remembers and returns to old pathways.

We were watching the Dark Night, and I had to ask Mark to turn it off. One small loud noise in the movie and I was crying in fear.

Later I was in the older room and I heard a fire alarm on the TV. I panicked. Because if I live in a world where my unborn daughter could die, then I also lived in a world where a siren must mean our house is going to burn down, and I would lose Mark too.

Mark accidentally dropped his phone on his way to bed, when I was already asleep and I shot up immediately as if I heard a gunshot.

I am using my coping mechanisms that I have learned through counseling and I know I will work through this, just as I did before, it was just an unexpected reminder from the body that I live in a different world than I did one year ago.

Monday 4 January 2016

Last January

Yesterday I went in to get a flu shot.  It was on my list of things to do while I was off work for the holidays, and I procrastinated until the last day.

I went back to the pharmacy and put in the order, and they gave me a form to fill out.  Typical: name, date, birthday etc.  Then the question I always hate, "are you pregnant?"....why no, thank you for rubbing it in.... But then they added a follow up question "are you planning on getting pregnant in the next month?"  I circled it, because yes, we are trying, but gee if only you could plan to get pregnant and actually get pregnant, wouldn't that be nice....sigh.

I waited and they called me back in to the little room where they give the shots and the pharmacist came in.  He looked like he was about my age and started some small talk as he looked over the form.

Then he got to the question: "so you are trying, but you aren't pregnant?" "yes", "Ok well it is good to get the shot before you are pregnant, so that is good" ...pause...  "Will this be your first?".... and my mind starts rushing, do I lie to save him, or do I tell him the truth....I took a deep breath and said "It's a long story, but our daughter was stillborn in January".

He actually didn't seem panicked about my response which so many people do, but he did seem to feel bad for asking.  Then he responded "my wife is pregnant and due in March and we worry every day about something going wrong"

As much as it was hard for me to hear about his pregnant wife (It just hurts to hear about anyone who is pregnant or has a baby because it is what we want so much) but it was nice that he actually admitted his fears to me.  Most strangers I tell about our loss panic and change the subject, as if not thinking about it means it didn't happen, or won't happen to them, but he fully admitted that it can happen to anyone and it is scary. Although I don't know this man, and may never see him again, I appreciate his honestly.  That kind of genuine response, genuine feeling, is one of the things that I have found is the most helpful to me. Just having others acknowledge that it is scary, and sad, and incredibly hard is helpful beyond measure.

Another totally different realization came to me through this experience as well.  As I left after getting my shot I realized it is January 2016.  I can't just say "my daughter was stillborn in January" anymore, I have to say she was stillborn last January.  I know we are coming up on her "birthday" and I am fully aware that it will be one year since we've lost her.  But I have finally become comfortable with my response "my daughter was stillborn in January" I can say it without much hesitation, or panic.  But now I have to change what I say because we are no longer in the same year in which she died. It is now "my daughter died a year ago".

I know I will have to keep changing my response, because life changes.  As much as it will be hard to hear the question, I do hope to hear "is this your first" if I am ever lucky enough to be pregnant again, because it will mean I am lucky enough to be pregnant again.  And I will again have to re-asses my response if we are lucky enough to eventually have a kindergartner to decide how many brothers or sisters they tell the class they have.  But keep finding on this journey through loss, that just when I think I am getting comfortable, or have things somewhat figured out, that I actually don't. There isn't a handbook for "getting through" loss.  There are coping mechanisms, and healthy ways to grieve, but they are different for each person, and different on different days. And really, we just have to take it a day at a time.