To Peyton, On Your Fourth Birthday

Peyton,

Today should be your fourth birthday. I imagine you here, brown curls, blue eyes. This year feels so different, or maybe the wave just hasn't come for me yet. I am sitting here, next to the light that you have been turning on for me all week, thinking about how amazing and strong in spirit you are to continuously find ways to remind us of how connected we are. How can I feel anything but joy, love, and appreciation for that? You make me so proud.

It feels like Daddy and I have every ball up in the air right now, juggling a million decisions at once, but I know in my heart that no matter where they land, no matter where we land, you will be right there guiding us.

Some days I miss you so much I can taste the mint of your hospital room in my mouth. I can feel your head on that heavy place in my chest. I nearly believe that if I reach out just far enough, you will be there reaching back. I am learning to live with the fact that you won't. I am learning to accept a life of never again getting to cuddle and hug you. It's hard. It's always hard. It always will be hard.

Some mornings I hear your brother and sister laughing in their room, and like to imagine you in there whispering little jokes in their ears, or singing them songs. Maybe you are.

Squeaks reached out for your picture the other day. I explained to her that you are her "big, little sister." She just laughed. I promise you that I will raise your siblings knowing how amazing you are.

Peyton, there are so many things I wish could have been different. So many things I wish I had done differently. So many scenarios that I play, and replay in my mind, just searching for the one that would have saved you. I wish I could have, baby.

Daddy, Bubba, Squeaks and I are going to be sending lanterns up to you tonight. Will you look for them, baby girl? Will you feel the heat of my hugs in their flame? I hope so.

I love you my sweet forever-baby girl.

I will never stop wondering why you had to go.
I will never stop feeling grateful to have had you to love.

Happy Birthday.

Love,
Momma

Peyton Elizabeth 

9/4/08-10/2/08

First. Loved. Always.

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September 4th is here already. 

To honor what would have been Peyton's 4th birthday, we are doing a Gift Card Drive to benefit families with critically ill infants at Connecticut Children's Medical Center. From Sept. 4th (the day she was born) through Oct. 2nd (the day she passed) we will be collecting gift cards to the following establishments:

*Dunkin Donuts 

*Friendly's

*Shop Rite, Stop and Shop, Walmart, Target, Price Chopper, etc.

*Gift Cards to Area Gas Stations (Sunoco, Shell, Valero, Getty, Gulf, Mobil, BP) 

These gift card donations are tax deductible. Please provide us with your address and keep your receipt.

Gift cards of any amount would be greatly appreciated and can be mailed to:

Doing Good In Her Name

P.O. Box 1281

Burlington, CT 06013.

Still Hers

I've been in a sort of funny place this week. Vulnerable. Emotional. I've written a number of posts without hitting publish. I never do that.

We started breaking down Peyton's room this weekend. I know... I know... it's long overdue. These little ones now need their own space, and yet somehow, knowing that just didn't make the task any easier. Neither did the fact that Peyton never actually came home to that room. It was still hers.

I can still feel, see, smell, hear, taste exactly how it was to be in that room in August of 2008. I sat in the chair with my feet up on doctor's orders. Hubs assembled the crib piece by piece and hung shelves. I folded tiny clothes, placing them into lined drawers.

We were ready.

Today marks 1112 days since Peyton died, nearly 1/10th of my life has been spent missing her. 1112 days of looking for answers that don't exist. Of trying to understand who I am now, and figure out where to go from here. I have grown a bit in these last 1112 days. Joy comes more readily now, as does gratitude. But Peyton, my sweet, sweet Peyton. She is no less gone. No less absent from our every day lives. No less a gaping hole in my being.

There is now a couch on its side where Peyton's crib once stood. And a file cabinet. And an office chair. Items stacked in a corner until my writing space can be arranged. The years of grief and dust in which I had written her name on that crib has been wiped clean. The mattress removed, replaced by one with certifications assuring me that there will be nothing toxic coming from it as my child sleeps. That crib, so long identified in my mind as Peyton's, is now the place where Squeaks sleeps (or refuses to sleep, as the case has been this week) in a room down the hall. Her brother, by her side, in a crib all his own.

But in that room, that room once meant to be hers, I can still sense the little girl who never came home. The baby who smelled of sweet mint, and was the first to lay her head across my chest. I can still feel the child who made me a momma.

With time Peyton's room will be redecorated and re-purposed. The writing studio I have talked about for the last few years will come into being and the bumble bee decor will come off the walls, but it doesn't matter. For me that room is still hers. It will always be hers, and I will always wish that she had come home to it.

READERS DIGEST CONTEST UPDATE: I NEED YOUR HELP
As a way to honor her third birthday, I have entered the Reader's Digest "Your Life" Contest with an entry about my experience mothering Peyton. The voting is open until November 15th, and you can vote once a day. It would mean a great deal to me to get Peyton's story in Reader's Digest. Can you please help me out by visiting this link and casting your vote for my entry. I have fallen way behind, currently in fifth place, a full 9000 votes behind first place! There were some issues with voting last week that sort of took me out of the running, but after contacting Reader's Digest about them, they seem to be fixed now. Also, you don't need a Facebook account to vote from what I have been told. Thank you so much! I would really love to honor Peyton this way. To raise awareness about the fact that little babies are born with, and die of, Leukemia. Peyton's story is a rare one, but it still deserves to be told. xoxo

Life Lessons Peyton Taught Me

No amount of time with someone you love can ever be 'enough' time.

Big changes come in small packages.

It is possible to love someone so much that it hurts.

Life isn't fair.

Appreciate everything you have right now, in this moment.

You are not the same person you were before loss.
That's not necessarily a bad thing.
Empathy is a gift.

Good people get hurt.
Bad people also get hurt.
No one is immune to it.

Some situations truly are impossible.

Right or wrong, a mother always blames herself.

When you least expect it - grief sneaks up on you.

There is no shortage of grief in this world.
There is no shortage of beauty in this world.

Begrudging someone for having it easy will not make your own path any less difficult.

There are no guarantees in this life.

Sometimes those who should - don't, and those you never expected to-do.
Focus on the do-ers because a friend who won't walk with you in sorrow, doesn't deserve to dance with you in joy.

Keep trying, or keep dying - the choice is yours.

Laughter is good medicine. It is not a betrayal.

Sometimes our greatest strength is in our willingness to show weakness.

Parenthood is a privilege.

Grief is personal.
It is also never ending.
The grieving don't owe anyone an explanation.

Find a reason to be thankful every-single-day, even if just for the fact that you made it to another day. It will sustain you.

Find a way to be creative every-single-day.
It, too, will sustain you.

You can deal with the emotions of your loss now, or you can deal with them later.
Either way, you will have to deal with them.

There is no shame in embracing the pain.

A tiny life can have a huge impact.

You are a work in progress.

Embracing your blessings is not the same as moving on.

There are times when you have to stop doing something to someone in order to do something for them.

Death is no match for love.

You are stronger than you think you are.
You are also weaker than you would have imagined yourself to be.

The end of your world is not the end of THE world.
The world will keep turning.
Only you can decide how long to stand still.

You can never go back to the way things were.

Gone does not mean forgotten.
Little does not mean insignificant.

There is no 'right thing' to say.
That doesn't excuse saying nothing at all.

You can't let death keep you from living.

Every experience, even the most painful ones, bring beauty in some form.


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A side note: As a way to honor her third birthday, I have entered the Reader's Digest "Your Life" Contest with an entry about my experience mothering Peyton. The voting is open until November 1st, and you can vote once a day. It would mean a great deal to me to get Peyton's story in Reader's Digest. Can you please help me out by visiting this link and casting your vote for my entry. Thank you so much!

All My Children...

What can I really say? 

No one ever imagines their family pictures will be this way.

This is my reality.

Letters From Heaven

My mother has a friend who claims to get messages from the dead.

Yes, you read that right.

I know.

When you start a post with a sentence like that, you sort of have to expect that half of your readers are going to roll their eyes and click elsewhere.

I don't know this friend well. In fact, I think we may have only met in person once. She started calling my mother shortly after Peyton died to say that she had received a message for me and my mom would take it down and bring it on her next visit, at which point I would just sort of shrug it off as someone trying to offer me some comfort and move on.

Some people believe in spirits.
Some don't.

Some believe their children become angels who reside in the heavens. Some see them in the beauty of nature. Others believe that death is the end, and there is nothing beyond it.

I believe that Peyton's spirit lives on. I believe this because I feel it. I feel her. There is something uniquely Peyton that washes over me from time to time, and I know in my heart that she is in that place you go when you leave this world, nudging me along and offering me comfort.

In the early months after Peyton died, I thought I was losing it.
Legitimately.

I thought that having this child ripped from my body then thrown in the earth was going to be the end for me. One day I was downstairs, taking out my anger and sorrow on the elliptical machine, and I lost track of time. When I emerged from the basement, the daylight had gotten away from me, and walking upstairs, my heart caught in my throat at the realization that the house had gone dark.

I hate walking into dark rooms.

All was blackness around me, with the exception of a small stream of light coming from our dining room. I hadn't been in that room for weeks. It had become a dumping grounds of sorts for all of the condolence cards, and items from the hospital, and when I couldn't figure out what to do with either, I flipped off the lights and didn't return.

Coming up from the basement, I found myself drawn toward the light, and wondering about its origin. I discovered that it was coming from our hutch. It was shining on a small white box -the box of her things that the hospital had given us - her hand prints in plaster- a lock of her sandy brown hair. An entire life packaged into a container far too small to hold a pair of shoes.

What I found particularly odd about the situation was that the light that was shining on Peyton's things requires for you to physically walk over and touch an area of the hutch to turn it on. I hadn't, but I felt in my heart that I knew who had, and a sense of peace washed over me.

I told hubs about this little moment that I had had with Peyton, and the light, and he sort of discounted it as another wacky behavior from his grieving wife. He checked my forehead for a fever, told me I looked like I could use some rest, and reassured me that it must have been something to do with our electric.

A few days later, I was walking up to our bedroom. There is a picture of Peyton on the nightstand, with a flashlight beside it. I keep the flashlight there because I am a terrible insomniac, and rather than wake hubs up with a lamp, the flashlight offers me enough light to read. When I walked into the bedroom, the flashlight was flashing. On. Off. On. Off. casting it's beam against her photograph. I am not gonna lie, the sight of it really had me sort of freaked out. I called to hubs (knowing he would never believe me on this otherwise) and he came running upstairs to see what had happened. The flashlight, which was a good 10 feet away from either of us, continued flashing against her picture.

Hubs was stopped in his tracks.

A light on a hutch being turned on, he could make sense of. A flashlight flashing on and off with no explanation - not so much.

It was a few days later when my mother called to tell me that her friend had "received" a message from Peyton. I sort of rolled my eyes, but listened anyway. "Okay mom," I said, "what did Peyton say in her message this time?" My mom went to reading what she had written down, and I felt myself go white. The message read:

"Laughter is needed to fill our hearts. Twinkle. Twinkle."

I hadn't told my mother yet about the light in the hutch, nor had I told her about Peyton fooling with the flashlight, but reading "Twinkle. Twinkle." in the message, I knew exactly what Peyton was referring to.

On a seperate occasion, I had gone to Peyton's hill with my father to plant some flowers. On a whim, we decided to collect rocks and make them into the shape of a heart, planting the flowers within them. Later my mother told me she had received a call from her friend with a new message from Peyton. It read:

"Tell my mommy and daddy I can see heart flower."

I asked my mother if she had told her friend about the garden my father and I had created, and she told me that my asking this was the first she had heard of it. My dad had never brought up the fact that we made the garden into the shape of heart.

There have been several more messages that Peyton has sent to this women since her passing. Some that seem to make sense or bring us peace:

"Tell them I have so much love tucked into my heart, 
because we will always be together."

And others that seem to have no significance, and leave us scratching our heads:

"Tell them I love pickle ice cream."

This weekend, I was sitting in the room that will become the snowflakes' nursery, doing a good job of directing hubs around the room to pack things away to be moved into my writing space, when I came across a few of the notes that my mother's friend had sent with messages from Peyton written on them. I was reading them aloud to hubs, and we were laughing at some of them, and finding meaning in others. Finally I came to the last note we had received.

It was from late last year - a time that was difficult for us. We were struggling with infertility, had not yet been diagnosed with blocked tubes, and had no idea that IVF was in our future. This message at the time had seemed the most bizarre and out there yet, and I tossed it aside, thinking myself a fool for ever having found meaning in any of them.

This weekend, however, when I read it back again, this ridiculous little note suddenly didn't feel so ridiculous anymore. It read:

"Twice baked potatoes can be very, very good."

"The twins!" I said, as if truly reading the note for the first time. "Twice baked potatoes - she was talking about the twins. She knew before we knew."

"Maybe," hubs said, raising an eyebrow and smiling.

Maybe indeed.

Missing and Growing...

I miss Peyton's hill... a lot.
I miss talking to her.
I miss feeling her near me.
I miss breathing in the air up there and being inspired to write.
I miss the cold snap of wind against my cheeks as I ask her to send mommy a little warmth and sunshine.
I miss watching the hawks, and the eagles soar overhead.
I miss telling her about the animals that have left tracks in the snow.
I miss finding moments of animation among the stillness.
I miss closing my eyes and tapping my chest the way I would her back when she was in my arms.
I miss singing songs to the quiet air - "You Are My Sunshine," "Smile Awhile," and "Oh Dunderbeck."
I miss feeling that she could hear me singing these songs.
I miss these moments which are the only ones I have left to mother her through.
I miss her.

I can handle the boredom, and the redundancy of bedrest.
I can handle feeling trapped in my home.
I can handle so many things.
What is hardest for me to handle is the way this has kept me from her.
I hate knowing she is up there, covered in snow, and there is nothing I can do to clear her space.
I went from visiting her every single day for over a year and a half, to seeing her only a handful of times this entire pregnancy.

You have not been forgotten little girl.
You have not been replaced.
You never will be.

****POSSIBLE TRIGGER POST****

The remainder of this post talks about the Snowflakes, my pregnancy, and also shows some belly pictures. I know how painful this can be for some of you, and as always, am placing some space here for anyone who wants to avoid such triggers.

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Just a little Snowflakes update here.

I am 31 weeks 2 days and feeling every bit of it - in great ways of course. There has been a ton of movement - and these little ones have developed the ability to hiccup over the last week or so, which can be pretty entertaining. I feel a lot of pressure lately, and am completely exhausted. I have read about the "brick wall" that you can hit in the final trimester, and don't really remember that with Peyton, but carrying two has proved to be a much different game, and my energy is just tapped out. Breathing has become a bit of a challenge, especially at night. I think that as the day progresses, and my body fills with fluid etc, the babies put more of a strain on my lungs. I am not sure what can be done for this, so I switch positions a great deal in an effort to get some sleep. I usually get a few hour clips at a time. I like to think of it as practice, this insomnia just preparing me for life with two newborn babies at home.

I was supposed to go for a growth ultrasound tomorrow, but it was cancelled due to the horrific weather we are expecting here in the Northeast. That's alright though. Better safe than sorry, and the appointment has been rescheduled for Thursday instead. I am anxious to see how the babies have grown. All along our little boy, Baby A, has been measuring large. At our appointment around 27 weeks, he was already estimated at 2 lbs 12 oz, which put him in the 93rd percentile. Our little girl, Baby B, was measuring 2 lbs 9 oz, which placed her around the 50th percentile. They say that at this point, the babies grow about a half a pound a week, so judging by the fact that nearly 4 weeks have passed since that last scan, and the plethora of new stretch marks that have made an appearance as of late, I feel pretty confident these little ones are keeping that pace up and will be around the 4 lb mark when I go in next.

This is all great news, of course, since the SCH that has had me on bedrest for the last 130 days, also puts me at a heightened risk for preterm labor. The bigger these babies are, should they decide to make an early appearance, the better! Of course I don't want them to come early. I want them in there and cooking for as long as is best for them. If my uterus holds out until 38 weeks, the doctors will insist upon a c-section (which is an experience I would really rather not repeat) so I am just praying that they decide to come on their own around week 37.

For those of you who have asked about names - we don't have any picked out as of yet. We have a list, a very LONG list, that I am hoping to have narrowed down soon. It is proving harder to name two than we expected. Hubs and I don't agree on many names, so our search for the right ones has been an interesting experience.

For those who would like to see, here are the latest belly shots from 30 weeks. As always, your continued prayers for the Snowflakes' safe and healthy arrival are much appreciated.

Making "The Best" Of The Holidays Without Her

Last weekend was the annual laying of the grave blanket on Peyton's hill.

Since her passing, my parents have made a tradition of providing Peyton with a decorated spray of greens meant to keep her warm and protected from the winter snow.

Here is a picture of my mother with last year's grave blanket...

Due to my being on bed rest, I wasn't sure that I would be able to join my parents on their trip up to see her this year. Ultimately I decided that since the cemetery is only a few minutes from our house, and since this stupid SCH had already cost me the chance of celebrating Peyton's birthday and balloon release with her, I would go along and just lay in the car if I had to.

This year my mother decided to go with a different style for the grave blanket, fashioning it into a candy cane. Didn't she do a lovely job of decorating it? I think this year's is her best one yet...

She and my father brought the candy cane over to Peyton's grave, and I watched from the car as hubs got to work attending to his little girl's spot. Even though she is not here, hubs still takes such care in making sure things are just right for her. He cleared out some fall plantings and cleaned up any lingering leaves...

When everyone was happy with the way things looked, hubs waved me over from the car and I joined in the celebration.

Here we are, all together - Hubs, Me, The Snowflakes, and Peyton...

(please excuse the awful, awful, wild static hair and lack of make-up

nearly a hundred days of bed rest will do that to you)

Peyton had a nice visit with her Gramma and Pop-Pop who said some prayers for her, and talked to her about the upcoming holidays...

There was even enough time to sing a few Christmas carols...

Our time with Peyton, unfortunately, was limited. On bed rest I am not allowed to stand more than 10 minutes at a time, and this short visit had my stomach and back in quite a bit of pain, but it was worth it.

I have really missed being able to visit Peyton on her hill these last few months. A mother feels her child with her always, it's a bond that even death can't break. But for me, that cemetery is sacred ground. It is where my child lays. Even though I carry her spirit with me everywhere, regardless of location, there is still something to be said for being so close to what remains of her physical being.

When we were expecting Peyton, this is certainly not the way I envisioned spending the holidays with my little girl, but nothing about living without your child can be expected. Though not ideal, our visit with Peyton was still nice, and I am grateful to my parents for creating this lovely tradition.

What traditions have you put into place to make "the best"  (or at the very least the "most bearable") of the holidays without your little one's here?

On Blessings and Gratitude This Thanksgiving

I am blessed to share my life and love with an amazing husband...

who is also my best friend...

and an incredible father.

 I am blessed to know what no one else in this world knows - 

what it is to be this little girl's mother.

I know how it felt to be looked at with those sparkly blue eyes...

and the warmth that came in holding 

her close and being the recipient of her unguarded love.

As well as the great gift that comes with feeling her all around me, 

even though she has gone.

I am blessed to have the the loyalty and love

of a very special pup who came along at just the right time,

and has done wonders to bring healing into my heart.

This Thanksgiving I feel especially blessed and grateful

that what we were once told was impossible has come to be,

and a renewed sense of hope and promise has re-entered our lives.

Baby A - Boy

Baby B - girl

And then there is the unyielding support of my friends, family, and this community who have celebrated with us in triumph, and stood arm and arm with us in our sorrow. There are no words for what this has meant to me.

When you live on this side of the loss and infertility universe, and trudge through your days in that old pair of shoes that we never imagined ourselves wearing, it is so easy to focus only on what is missing. 

No one is more guilty of this than me. 

But there are blessings.

Even in the moments along this journey where the road seems too hard, and the future feels full of impossibilities, there are always blessings to be felt and found. If last Thanksgiving I could have seen what this Thanksgiving would hold, I never would have been able to believe it. Joy felt impossible.

But this year, despite the unending grief and sense of loss that I will always feel for Peyton, and despite the high risk nature of my pregnancy with the Snowflakes, and the bedrest, and the health issues, I can't help but to feel truly blessed.

And that is my wish for each and every one of you - a day where your heart feels full of blessings and peace. And if tomorrow that still feels impossible - hold out hope. There is no telling what seemingly impossible things the days between this Thanksgiving and the next will bring. 

Happy Thanksgiving!

A Community Of Good

Last November I was in a pretty low place. We had just made it through the first anniversary of Peyton's birth and death, and were facing another tough round of Holidays before us. Hubs and I had been trying without success for months to conceive, and my doctor was still giving me the "you are grieving too hard to get pregnant" runaround. 


Being surrounded by so much loss had left me at a loss.


I was desperate for something good to come out of this. 
Out of any of it.
Something good to come out of all Peyton had suffered through and endured.
Something good to come out of all that we had lost as a family.


It is from that desperation that Doing Good In Her Name was born with these words:

"I feel such a strong desire to honor her, to have her name be synonymous with something other than the sadness and the grief.  This idea, well,  I like to think of it is her way of asking us to help out the little friends she has here... the ones who are still fighting the good fight."

This past weekend marked one year since we set Doing Good In Her Name into motion. At the time, we never could have foreseen all that it would become. We had created a basic website (thank goodness Franchesca has since come through to beautify it for us) purchased a few rubbermaid tubs to house any goodies that might come in, and waited - not really sure what, if anything, would arrive. I remember telling hubs that if we could just fill those bins once, I would feel like we had made some sort of a difference. 


What followed has been nothing short of a miracle - an outpouring of generosity, primarily from this community, like I never could have imagined. Fellow bloggers and readers began sending package after package to our P.O. Box to help us help families with critically ill infants being treated at the hospital where our Peyton spent her entire life. Those tubs, that we had once hoped to fill, have been filled and filled and filled several times over.


Peyton, in her own special little way, had given us this idea, and in spreading the goodwill and donations around to other families with children in the NICU, it was like spreading a bit of her love, and the love of this community, and there are no words for what that has meant to me. 


I rarely, if ever, post about it DGIHN here because this is my outlet, the place for my grief. This is where I come, to cry and to celebrate, to share and be heard, to grieve and to honor. That being said, your outpouring of love has been so immense that I feel it deserves recognition, so that's why I am writing this post, to honor you, the members of this community, who have come through in helping this initiative grow.


So many of the amazing readers of this blog have come through with donations over the course of the year. I don't feel comfortable in listing those names here individually because I have not gained permission, and I know that some of you who read here are on your own loss or infertility journeys and do so in confidence and might not want your name connected with this site. I also assumed that anyone who wrote that they know me from this blog, but didn't include their own blog site in their cards, might want their privacy protected. That being said, every donor's name is listed on the front page of the Doing Good In Her Name website, and should be celebrated.


And then there are my fellow ALI bloggers who have sent so many beautiful and caring gifts to assist other families with critically ill babies. Since you share openly in this community, I feel comfortable posting your links. Thank you so much ladies (and gentlemen) your generosity amazes me!


Catherine W
Salma
Margaret
Angie
Jenni
Jeannette
Bobbie
Holly
Paige
Lisette
Susan and Jeff
Sally
Malory
Sarita
Jill
Jane
Marissa Finn


And this is what that generosity has turned into - so much support for NICU families over the course of this past year... AMAZING!


Cash: $1890 -Gift Cards: 12- Infant Clothing: 555-Infant Shoes/Socks/Accessories:146 Bibs: 50 - Hats: 124 - Bottles: 102 - Bottle Accessories: 368 - Cans of Formula -15 Pacifiers: 89 - Pacifier Clips: 3  Infant Rattles/Teethers: 51 - Books: 116 - CD's:41 - DVD's: 7 - Posters: 1 - Toys: 32 Mobiles/Crib Toys: 6 - Blankets: 61 - Hooded Towels: 4- Baby Washcloths: 16 - Crib Sheets: 7 Tummy Time Mats: 1 - Diapers: 240 - Diaper Baggies/Accessories: 101 - Other Room Items: 6 - Digital Photo Keychains: 2 - Prayer Squares/Items of Encouragement for Families: 40 - Rubber Interlocking Foam Tiles: 1


So, from the bottom of my heart, to all those who have helped us honor Peyton's memory through supporting  Doing Good In Her Name, whether it be through donations, prayers, or just helping to spread the word - THANK YOU!


**If you have donated and don't see your link listed above, or you don't have a link but donated and would like your name listed here, PLEASE let me know so I can fix it :) 


Also, anyone who wishes to follow DGIHN's blog, please do so by clicking the DGIHN blog here. When we updated the site, our google followers were attached to the homepage and for some reason got lost.

Wanting to Want to Remember

I had a nightmare.
At least I think it was a nightmare.
Sometimes PTSD makes it difficult to distinguish between what is a dream
and what is a flashback,
especially in the early moments after waking.

I dreamt of our camcorder.
Sounds silly, right?
It was a wedding shower gift from my bridesmaids.

I replayed in my mind all the discs we had created with it.
So many discs.
So many memories worth saving,
all contained to the first two years of our marriage.

Our trip down to Florida to see hub's family.

Long car rides with the camera rolling
as we cracked jokes and bantered nonsensically to break the monotony.

Images of my husband waking in the early hours of morning.
He hates to be recorded this way - I love it.
How intimate it is. How only I get to see him like this.

The two of us talking over my pregnant belly.

My mind played over the contents of each disc,
and then it stood in fear
before the one that we can't seem to watch again.

Less than an hour long.
It is her whole life.

There are scenes from my first induction.
That trip to the hospital was full of hope.
It failed and we went home empty handed and I felt it then.
In retrospect, though I had no way to know, I felt it.
It was a foreshadow of what was to come -
me staring longingly at the car seat in the back.

The empty car seat.

I felt it and it scared the life out of me.

Then came the scenes from a week later - her second induction.
Peyton was stubborn.
She wouldn't come out.
We still didn't know.

I had felt it on that car ride the week earlier,
but we didn't know.

At this point in the video,
we still thought we were having a take home child.

The images move on to the Operating Room.
Hubs telling me we had a girl.
Me looking at him in disbelief.
The anesthesiologist asking what her name was.
"Peyton," I uttered, even though it was not the name we had discussed and decided on.

These first five minutes of the video are joy filled.
Or at least as close to joy filled as any in her life.

I am in a haze,
a deep anesthesia induced haze,
but I feel joy.

I remember the fear and disorientation from the drugs.
The way my body shook violently.
The nausea.

I remember feeling that I was missing her birth in my fog.
But there was joy.

She was here.
She was fine.
The doctor told me she was perfect.

That scene ends.
Then, of course, the joy is lost.

The rest of the video details her degradation
from a perfect, pink little thing,
to one who is bruised and battered.
Our little Peyton, by the end of the hour,
is barely recognizable.

We watched the video right after she died.
Literally right after.
In those early days.
It might have been the night of her funeral.
I can't remember.

What I remember is that my parents were here,
and we sat together
and we watched it.

It was so hard
that we couldn't face it again.
So we put it away.

"Maybe each year on her birthday?" we said.
"Or her angelversary."
Neither has ever felt possible for us.

The videos ended.
The nightmare continued.

That's what my dream/flashback was focused on this morning.
On the after.

There are no videos after that one.

This, among all the other things listed, is what scared me the most.

There was life.
And then Peyton and her death.
And then grief.

Can one simultaneously live and grieve?

If you can, we haven't figured out how.

Not truly.

Maybe in a day to day way.
But never in a way that felt worthy of remembering.

Since her death there has been cause for documentation,
but no desire.

A cruise my parents took us on in the early months.
The birth of my nephew.
Weddings.
A camping trip.
Christenings.

It's as if we have been going through the motions but not really living them.
Seeing things but not experiencing them.
Breathing but not being.

I want to get back there.
I can feel that change happening inside of me.

I want to get back to that place
of wanting to remember where I am,
rather than just wanting to survive it.

On Bedrest, Viability, Stresses, and Blessings

This past Sunday marked 22 weeks in my pregnancy. My little snowflakes are mere weeks away from viability now, and though my desire is for them to stay in there as long as they can (preferably 36-37 weeks so that I can deliver them naturally before my scheduled c-section at 38) the knowledge that something could be done for them in the next few weeks, has me mentally counting down the next 12 days until they reach that milestone.

I never did this type of countdown to viability with Peyton. I just assumed with Peyton that all would be well, and my pregnancy coasted along rather smoothly. At forty two weeks, after my second induction had failed, Peyton came into this world via c-section. I truly believe she would have stayed in there forever if I had let her, and sometimes I wish I had. Inside of me she was protected, my body provided for her what her own could not, and I truly believe that the happiest moments of her life were those spent in my womb.

With my snowflakes, I have been sort of forced to take the possibility that I may not reach the 36+ week mark into consideration. With any multiple pregnancy, the likelihood is a little higher for not going fully to term, and when you compound that with the fact that this SCH predisposes me to premature rupture of membranes and pre-term labor, you end up with this perfect storm of worry that has prompted this big count down.

Just this week, two woman on my SCH support board have gone into early labor (one whose OB told her the night before that her SCH had fully resolved), and it scares the life out of me. These women were just 22 weeks and change, and barely 25 weeks along, and their stories make it feel as if reaching that point of viability cannot come soon enough.

Though full of many, many blessings, this whole pregnancy has been pretty complicated. My issues with the bleed in my uterus continue, and though I have not actively bled in a while (thank God!) my last ultrasound showed that the SCH had grown a bit. Three weeks ago it had gone down to 5.5cm which was great news, but last week grew to 7.9cmx3.5cm - so roughly a little over 3 inches by a little over 1 inch, and though my Peri told me she was pleased with the size, seeing as how 7.9cm is only 1.1cm from the size my SCH was at the time of my first "big bleed," I didn't find a whole lot of comfort in that number.

As of this weekend, I have hit the 2.5 month mark of being on bedrest, and have come to terms with the fact that it what it is - a necessary means to an end. Bedrest is kinda boring, kinda mentally exhausting, but necessary so there is no point in fighting it. Every few weeks I will have a day where I want to get out of my house and run down the street, or go up Peyton's hill, or pick up groceries, or do any of the things that I feel physically capable of doing, but I can't, and I just have to cope with the reality that laying around like a lump all day every day is what is best for my babies, and move on.

Things have also gotten a bit more complicated this last month because I have developed some fairly annoying cardiac issues. For about six weeks my heart has been racing on and off as I lay here, with my resting rate having long spells of being between 120-130. I went to the cardiologist who told me that laying down causes the blood in my heart to pool, and when that pool pushes through my heart, that causes the rapid heart rate. He put me on a 48 hour holter monitor and the very morning the holter monitor went back, my heart went into arrythmia, and has pretty much stayed there since. There are long 2-3 second pauses in my heart beat every 4 beats or so, and while the doctor has promised me it is not affecting the snowflakes, the sickening feeling it gives me (like that of having a panic attack or someone stepping on your throat) makes me feel anxious, even when I am not. This is making "relaxing" a little harder to do because I constantly feel unable to breathe and like my heart is a cement mixer tumbling around in my chest.

I sound rather geriatric don't I?
But that's okay.

I constantly remind myself that this is all temporary, and in four months time will reap a huge payoff, and somehow thinking about it that way helps.

I got an email from a friend the other day where she was talking about some of the worries she is feeling about being pregnant after loss. In it she said something really beautiful, and regardless of our given situations right now, I think it's a bit of advice we can all use. She said that she could feel stressed, or she could feel blessed, and she was opting to feel blessed.

I have been reminding myself of these words a great deal the last few days. Yes it is not ideal to be having all of these health issues, and yes bedrest is a bore, but I am blessed, so blessed, with two little snowflakes that have decided to kick and punch and let me know day and night that they are here and they are thriving. I have a lot to feel stressed about, but I also have a lot to feel blessed about - so, like my friend, I am going to (try) to go for that.

Here is my latest belly bump pic taken last week. I have some fairly recent ultrasound shots, too, that I just need to get uploaded, so hopefully they will appear in a post sooner than later.

Again, I am putting lots of space here for anyone for whom this might be a trigger. Sending love out to all my fellow infertiles who are trying for their own bumps, and my fellow babylost mommas still waiting on their rainbows. I pray that this happens for you all sooner than later.
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I am blessed. I am burdened.

Every once in a while I get a note, an email, or a comment from someone expressing concern that in missing my daughter, I am not focusing enough on the blessings that are these little snowflakes, or that if I focused more on the blessings that they are, it would make missing Peyton somehow become easier. I don't begrudge the comments, they are always well meaning and said with love. It's just that to me, the thought of focusing on your blessings not your grief sort of oversimplifies what it is to be in a high risk pregnancy after a traumatic infant loss.

Amongst the rays of joy and sunshine, my grief thrives, and deep down I know it always will to some degree. How can I not grieve when a part of me, the first life born of the love between my husband and myself, will never be here with us? Her loss has cut through me at an organic level. It has altered the very core of my being.

A wound like that is chronic. It may lay dormant at times, hidden beneath the surface of our smiles, but the pain at losing Peyton, in the manner in which we lost her, will always be there, and reminders of what we don't have, will always be evident.

I was coming home from the cardiologists office the other day (I have been having some cardiac issues this pregnancy too, but will go into that on another post) and passed a woman on the street pushing a twin stroller with two 18 month-ish children in it. Beside her, a girl who appeared a few years older, pushed a stroller of her own with a doll inside. The mother waved, and smiled, and I waved, and smiled, but it hurt like a dagger through my heart.

THAT was what should have been.

My daughter should be here, trying to make whatever sense she can in her own toddler way of my ever growing belly. She should be that little girl in a year and half's time, walking alongside her momma and siblings, pushing a doll down the street. There are so many things that should be with Peyton, but they won't and never will be, and that hurts.

I can accept that she is never coming back. I can accept that for all of my life I will struggle answering "how many children do you have" or wonder what she would have looked like at a particular stage in her life. What I can't accept is what I can't understand - that for reasons that have still never offered any answers, two perfectly healthy people made a cancer ridden child, and a month of suffering was the only life she ever knew. I do my best to hold onto the beauty - the memories of holding her, how she smelled, the touch of her cheek against my chest, but I will never understand why she is no longer with us. Why part of me is no longer with us. Why my husband and I will never again be "whole."

That's not to say, of course, that we can't live a life of joy. It's just to say that a life of pure joy is not possible.

We have seen too much.
Lost too much.
Cried too much.

I experience joy daily from the love of my husband, my family, my friends. The reassuring nuzzle of my dog Charlotte against my side. Each bout of morning sickness, though it taxes me physically, that offers a sign that things are moving along as they should be.

Each day I offer gratitude for these babies. After hearing the words, "you will never again have children" I know full well that each kick is a grand accomplishment, and every punch or jab is a reassuring gesture of love that all will be okay. I rarely allow myself to dwell on all the reasons that have me on bed rest, or the scary complications they can bring, and instead tell myself that in four months time, God willing, these little snowflakes will be born into this world healthy and whole, and another level of healing in my heart can begin. 

A level of healing. Not a cure. There is no cure that can undo what has happened to our sweet Peyton.

I look for joy and blessings in the every day - but I am only human.

I have found it impossible to experience so much loss - to carry a child I believed was healthy and discover at birth that she would most likely not survive; to try to live with making end of life care decisions that come to haunt me daily about that child who I so wanted, planned for, and loved; to have to bury that child, and then just get over it, or sugar coat it beneath life's other blessings.

I know that there are many who have had it worse than me, and remind myself of this every day, but somehow that just doesn't make this journey any easier to take.

Most days I wake up and I feel content - not whole, I will never feel whole, but content. On other days I am paralyzed by the fear of possibly re-living the nightmare that has been the last few years. Scared mostly by the knowledge that I got through by the skin of my teeth the first time.

Right after Peyton died, a friend told me that people would be looking to me as an example of strength. This friend has since all but vanished, and I have felt in my heart that it is because I didn't live up that expectation. I wasn't strong through Peyton's death, I didn't and still don't know how to be. The best I have been able to offer is honesty - my weakness and vulnerability exposed every step of the way.

In my current journey, the one of walking the tightrope between bereaved mother and expectant mother, I follow much the same path. Most days I feel confident that all will work out, but on others words like pre-term labor, infant loss, high risk, and leukemia come banging down my door, and when they do, all I can do is hold on tight waiting for that storm to pass.

There are certain African cultures where young boys are sent out into the woods to hunt at night as a right of passage. Some of these boys, too, struggle to be brave. Some of them find that they, like me, are not "examples of strength" but walking into that dark jungle is what they have been called to do, so they go out and try none the less.

Fears surround them - of the dark, of what lurks in the shadows, of the stories of other young hunters encountering wild beasts that over power them. They are sent into these woods with a spear and a message - a token of advice from the elders to get them through. "Yes these terrible things can happen in the jungle, but that doesn't have to be your story."

I think of these boys on the really tough days. The days full of guilt and grief and fear and I remind myself that yes I lost my first child with no warning and no answers and yes I am scared it could happen again, but even though Peyton's birth story and life were tragic, and will always stay with me, that DOESN'T HAVE TO BE the snowflake's story.

I repeat this message to myself until it starts to feel true, and when it finally does, I pick up my spear, and my gratitude, and push forward through the jungle once again.

I am a prisoner to my nose...

So the last few weeks have been pretty redundant. Wake up. Brush teeth. Back to bed. Take a few quick trips to the fridge/ bathroom. Back to bed. Take a shower. Back to bed. As you can tell... very exciting. 

I am happy to report that I have not bled since Thursday, and am crossing my fingers that this is some sort of good sign, though I know that SCH's are totally unpredictable, and no two cases seem to be the same. I have spent the last 4 days really focused on moving as little as possible and I think that is working. I have heard a few stories of SCH loss recently, and I can't lie, that's really hard. I am so incredibly in love with these two little babies, so incredibly in love, and am just holding onto the hope and belief that regardless of this damn uterine blood clot, come late February or early March, they will be here healthy, happy, safe and sound.

We went to the Doc this past Tuesday. I wasn't supposed to go until next Tuesday, but my morning sickness out of nowhere kicked into a super high gear, and I worried it might be some sort of complication due to the SCH. I am thrilled to report that once again both babes looked good on ultrasound and at one really adorable moment, they each leaned back to a laying position and put their hands in their mouths simultaneously and my heart just stopped because that was something their sister always did, in utero and in life, we even had Peyton buried with her hand to her mouth because she loved sucking on it so much, and seeing that sibling similarity between what she liked to do, and what they liked to do, was really touching.

Any guesses out there as to what sex these little snowflakes are? We have a pretty good idea, but have been told that it's still a little early to announce, because the ultrasounds at this point are not entirely reliable in that department.

To the first person who guesses correctly (or at least what we feel is correct at this point) and says Baby A is... and Baby B is... I will send you a prize :) Well in all reality, hubs will send you a prize because I don't leave the confines of my home except for doctor's appointments. Today was an exception to that rule however. Hubs told me he was worried because it looked like I "needed some fresh air" so he took me for a nice morning drive and I am so grateful that he insisted on it because the change of scenery did do me a lot of good.

You may be wondering at this point, what any of this has to do with the title of this post - "I am a prisoner to my nose." 

Let me elaborate. 

I have pregnancy nose - big time. Everything stinks. I spend little to no time on our leather couch because it is new (a few months) and stinks! stinks! stinks! Poor hubs has tried everything from baking soda to a product called Odorzout (at 45 dollars a bottle, what a waste of money that was!) to get the smell to stop offending me but it has been to no avail. Anyone have any leather smell removal tips for me? Because of this, I am spending more and more time just in my bedroom, my boring old (but not smelly) bedroom.

Beyond the issues with our couch, we have run into issues with our dishwasher where dishes literally come out smelling like vomit. I can't tell you how pleasant THAT is to deal with when you have morning sickness as it is! Poor hubs has taken every part of the dishwasher that he can reach apart, and still not found the culprit of the smell. Now, on top of all his other responsibilities with me being on bed rest, he is also stuck washing all our dishes by hand. 

Just goes to show, nothing is ever easy.

So there you have it - the reasons why I am a prisoner to my nose. I find every glass of water difficult to get down because even the clean dishes still smell dirty to me, and bottled water smells too much like plastic. I would love to spend my days watching TV (we don't have cable in our bedroom) or surfing the internet (don't have that up their either) but I can't because the couch stinks to the point that it has left me worried about whether there might be some danger to me being around it whilst pregnant even though calls to the state and federal consumer complaint departments, two pregnancy risk lines, Costco, their importer, the lab that tests Costco's products for safety, our state toxicologist, the consumer products safety commission, AND some random lab in California (yes, I know, I don't even live there but the stickers on it said that it meets California's guidelines for flammability and formaldehyde) have all assured me that while the couch may be "stinky" there is no reason to believe it is unsafe. Wow, typing that really illustrates how neurotic I have become - just another side effect of losing a child inexplicably to cancer.

So that's pretty much all the news that's fit to print here. I go back to the doctor on Tuesday to see if the SCH has shrunk at all (as of last Tuesday it was holding strong at 9cm at its largest point) and to watch my little ones dance around some more. Wish us luck!

**Also, sending prayers out to a few of my bloggy momma friends who are enduring their own trials right now, one who is facing her own SCH, and another who, though I don't know the details, is having a really tough time finding her way these last few days. Please keep them in your prayers too.

Here comes the rain again... argh!, double argh! argh!

Peyton's birthday was not AT ALL what we expected it to be. Hold onto your umbrellas, just when you thought my luck was changing, the storm cloud has blown back in.

Friday night I had some strong contraction type cramping and contacted the OB. He said that in all likelihood they were growing pains, and to drink some water and rest, which I did, which meant that waking up Saturday I had to get started bright and early to prepare for Peyton's birthday balloon release party.

The alarm went off at 5:30am and I was up, making dips, cooking ziti, running one last time to the supermarket. The church had said we could use their basement and we arrived there at 9:30 to set up for the party which was to start at 10. The doors to the church, however, were locked, and search as we might, we couldn't find anyone to open them. Apparently there was some confusion, the priest thought the secretary would be there, she thought he would be there, long story short I headed up to the cemetery to greet our friends, and hubs and my parents stayed behind to wait for the building to be opened, and to set up.

I got to the cemetery and a few friends had already gathered, which meant a lot to me because it was Labor Day weekend and people have a lot going on on Labor Day and they were making the time for Peyton and I appreciated it. I greeted those who were there, started bringing flowers to the grave, and was glad to see hubs and my parents pull up soon thereafter. We gathered around the grave, ready to get our balloons and markers out, and it dawned on me that I had left the CD I intended to play during the release in the car. I started making my way down the hill to the car and I felt wetness in my pants. At first I thought it was a little pee (sorry TMI) or some leukorrhea, but as I stepped, and stepped again, there was more. I looked down, and to my horror saw that I was gushing bright red blood that had soaked my jeans down to my knees. I called hubs over, hyperventilated, and he got me and my folks in the car and we headed off to the hospital. Her hospital. The one I swore I would never go to again because she had been born there, but it was the closest, and I was bleeding so much, and I was worried, truly worried, that I was bleeding out.

We got to the ER and they told me to wait, and I told them what they could do with their "wait" because it was my dead daughter's second birthday, and I had miscarried before, and I was pregnant with twins that I needed to make it, and I was bleeding and I would not wait. Miraculously they got me right in.

It was a long time before I saw a doctor, hours before they did an ultrasound, and all this time I was gushing, and gushing, and gushing. Soaking all the pads they had provided, the bed, everything. They came in and took vials of blood, and hooked an IV in my arm "just in case" and I told them I was thirsty and they said I couldn't have anything "just in case", and I knew "just in case" meant "just in case I needed an emergency D&C" and I cringed and I prayed and I begged them to be okay in my mind. My hubs and my parents stayed by my side the whole time, and tried to lighten the mood, and didn't correct me when I screamed that I was "sick of this shit," and this "wasn't fucking happening, not today" and that "if her doctor was the doc on call I was going to strangle myself with my blood pressure cuff."

And then came the grief over Peyton, poor little Peyton, who gets one lousy day of remembrance a year, and whose parents and grandparents were not even there for her release. I didn't know it at the time, but my family and friends still wrote her messages on her balloons, and still did the release, and still honored her, and for that I am eternally grateful.

The ER doc came in and hooked up the ultrasound and I told him, too, that I was thirsty, so thirsty, and he again told me I couldn't have anything and he started the ultrasound and I tried to look but he turned the monitor away, and I closed my eyes and repeated in my mind "they are both okay, they are both okay, they are both okay."

After what felt an eternity, but was really about five minutes, of complete silence, and furrowed eyebrows from the doctor, he told us that both babies looked good and we could have a look. On the screen my beautiful little snowflakes jumped and danced and looked perfect, and their heartbeats (though lower than we are used to seeing them) looked good, and the doctor told me it was a "threatened abortion" and gave me info on miscarriage and discharged me, and I threw the paperwork out because I was not even willing to accept that as an option.

My parents and hubs went back to the church to let everyone know what had happened, our loyal friends and family had stayed behind all those hours to hear word from the hospital, and I went home and showered and got in bed, and stayed there until Tuesday when my OB could see me.

So yesterday I had an appointment and an ultrasound and my beans are still beautiful, but they have found a large (3.5 inch (9cm) ) sub chorionic hemorrhage/blood clot in my uterus, and have put me on modified bed rest in the hopes it will either bleed out or be reabsorbed. I am trying to stay positive, though the doc did tell me that the risk of loss is still there, he told me that only time will tell and I should be "cautiously optimistic."

So that takes me to today, still bleeding but now it is more like spotting, and drinking lots of fluids and resting up. I am sorry this was such a run-on post, but it was a lot to share. I am going to post pics of Peyton's balloons that my aunt took, but first I thought I would leave you with these today... pics from last Tuesday's ultrasound when the snowflakes were 12w2d. Today I am 13w3d.

Our beautiful snowflake A - waving at us and facing us. 

(This baby is the same size as baby B, but the pic of B is just closer up.)

Snowflake B lounging and relaxing.