Thursday, December 23, 2010

Loss of Faith - Please send your prayers.

I am absolutely heartbroken to report here that Baby Faith Margaret Venezia, the adorable little girl whose button has been on the right side of my blog these last few years, and the daughter of my amazing cousin Erica who I have written about here, lost her battle last night to HLHS, a congenital heart defect, at just two years old.

Erica and I both welcomed our daughters into this world in September of 2008 and I have often wondered how two healthy cousins, from a healthy family, could bring such sick babies into this world. Erica's friendship through my grief of Peyton has been a godsend, and I have always looked at little Faithy as the one who would survive. Peyton's battle was too big to overcome, I told myself, but Faith, Faith was going to make it.

Through many ups and downs, Faith, like her mother, always faced adversity with an upbeat attitude and a huge smile. There are no words for how saddened I am to know that my cousin - my strong, amazing cousin - has now entered this world of loss. The anger I feel at this broken world for making children face battles too great to defeat is immense.

I know that many of you have followed Faith's blog in the past, and I ask you, please go here, to Erica's guestbook to send some love and prayers of strength and understanding to both she and her husband Billy.

Monday, December 20, 2010

"What Is" - A different kind of Christmas

Three years ago, on Christmas Eve 2007, I first learned that I was pregnant with Peyton. Ecstatic, I came bounding up the stairs, test in hand, to show hubs the result, and had shaken the thing so violently in my excitement that it had cleared the screen. "Look" I screamed, shoving the stick into his face. Hubs, not yet ready to greet the day, peered with one eye at what I was holding and said, "What am I looking at? It's blank." I ran back downstairs, chugged a glass of water, and tested again, this time tip toeing my way back up to him. This test had confirmed what the first had told me - our life was about to change - we were going to have a baby. We announced our pregnancy with Peyton to my family that night, while seated at Christmas Eve dinner.

Two years ago, on Christmas Eve 2008, we spent the holiday grieving our daughter. Peyton had passed less than two months prior, and most things about that year are a blur. I remember not wanting to remember. I remember staring at the tree, and the gifts, and feeling miserable. My family, not really knowing what to do with us that Christmas, did their best to help us get through it. We poured some strong drinks to forget, and sang a lot of terrible karaoke. We have never sang karaoke on Christmas before - my family is more the traditional read out of the bible and sing Christmas Carols type. At certain points during the night I escaped up the stairs to a bedroom or a bathroom and I cried and cried because my child was dead. My body, still swollen from carrying her, was a reminder of all that was missing that Christmas. It felt impossible to survive. We went to mass that night and sat in the front row. People all around me sang "Joy to the World," and praised the birth of Jesus. I sat, hovered over the pew, and sobbed. I couldn't care who saw me that Christmas. I couldn't care if my tears on this joyous occasion were hard for them. My daughter was dead and I was in a service proclaiming and celebrating the birth of a child. That Christmas I fell to depths that didn't feel possible to break free of.

Last year on Christmas Eve 2009, hubs and I again spent the holiday with my family. We had been trying since July/August for another baby without success. My OB kept telling me my infertility was my own fault - that the depth of my grief made conceiving impossible. We attended an earlier mass last year, a children's mass. If you are having trouble TTC and grieving the loss of your child, attending the children's mass at Christmas is about as joyful as sticking a poker into your eye. My nephew Dylan, just a month old at the time (and already old enough to have outlived his cousin) was swaddled across my sister's chest. I remember leaning into hub's ear at that mass, pointing to Dylan and saying, "by this time next year let's have one of those. Let's really do this." I believed that since my doctor told me that our infertility was my fault, there had to be a way for me to fix it. I believed that I could give this beautiful gift of a child to my husband. Hubs smiled, and squeezed my hand three times, the way he always does to say "I love you," and a glimmer of hope returned to our hearts. Four days later, as I lay alone on a cold steel table in the hospital, a doctor told me that my tubes had been destroyed by my c-section and I would never again conceive on my own. That pledge that I had made "to have one of those by this time next year," was no longer a possibility. We were devastated.

Christmas Eve 2010 is fast approaching. I have spent much of this month sort of ignorant to how quickly it would be upon us. Bed rest makes that easy. I don't have a TV in my room so I haven't seen the Christmas movies and Holiday Special lineup that usually take over this time of year. Outside we have a slight layer of snow, but nothing that screams "It's the end of December. Get ready!" We haven't even put up a tree. It seemed a terrible waste of time, since no one would be downstairs to enjoy it. Our shopping is done, but has been for some time now, since I started doing it online the first month of my rest. I am not even sure that I will be allowed to attend mass this year. Nothing about this Christmas feels familiar, and maybe that is a good thing, because to feel familiar would mean it would be reminiscent of the last three Christmases, and those are days I would like to put out of my mind altogether.

I am hoping that this year I feel at peace, and can feel Peyton's presence with me. She is mentioned to us less and less, even by those that we know love and miss her, and I hate that. Sometimes I think people think that in mentioning her to us they are reminding us of something, but what they don't get is that we always miss her, and always will. Not mentioning Peyton just makes us feel more alone in that. Her absence makes her no less our child. Just as these Snowflakes are so loved and so wanted, so our first sweet daughter always will be.

I guess this is the start of a different kind of Christmas. One that I never could have expected for myself, or planned on. This is the start of walking the line. I feel such joy and gratitude at the impending births of these little ones, and at the same time feel such sadness at what can never be with Peyton, and I think it will just always be like that. Time can pass. Our lives can experience many blessings. The holidays can be joyous once again, but the fact of the matter is that she will always be gone, and we will always miss her. I think if I spend my life waiting to feel better about that, or others spend theirs waiting for us to "move on," there will just be a lot of disappointment.

Life without all of your children present is what it is.

I have been thinking about how different this Christmas would feel, were Peyton here to experience it. I imagine how excited she would be, because this year she would really "get it" for the first time. I go down that road sometimes, because it is so easy to get caught up in the "what could have been," but I have come to realize that to survive this, we have to shift our focus to "what is."

For me, "what is" is my belief that Peyton's soul did not cease existing the day she passed. I don't know how it could have with all the messages and signs of comfort that she has brought to us and those we love since she left this world.

For me, "what is" is a belief in the possibility that just as I am imagining what Peyton would be doing were she alive - twirling and playing in the snow, looking up in awe at the lights and the tree, she is somewhere, some place far beyond my realm of human understanding doing just these things.

For me, "what is" is a belief that just as I feel the warmth and reassurance of Peyton's love ever present within me, she too is warmed by the love of a mother and father who have never let her wander far from their thoughts or their hearts, and never will.

For me, "what is" is a belief that though we have been met with heartache after heartache in our quest to have a child, there is a possibility, and a very good one at that, that our little Snowflakes will be here in a few months time, healthy and happy.

For me, this Christmas has to be about "what is," because it is only in accepting "what is" that I can find some peace with it.

This song is for you my sweet little Peyton.
(be sure to pause the player in the right toolbar before hitting play on this video)

Tuesday, December 14, 2010

I hate grief.

I hate grief.

I hate the way it leaves me feeling vulnerable and exposed.

I can't go into what happened today, but I got the sense that someone used the sadness of my story for their own benefit and it just makes my stomach turn.

Maybe they did.
Maybe they didn't.
Either way that's the feeling I was left with.
The feeling of being used.

I hate grief.

I hate that I have never mastered the art of sugar coating my feelings about what happened to Peyton.

My daughter was born very, very sick.
My daughter suffered a tremendous amount in her short life.
My daughter died, struggling for breath, in my arms.

How the hell do you sugar coat that?

How do you sugar coat that for the rest of your life you are going to miss this little being who could have and should have been somebody?
Who could have and should have been given the same shot at life as the rest of us?

Yes my life is full of many joys.
Yes I am grateful for the blessings that each day brings.
Yes I am looking to the future with a renewed sense of hope.

No that does not erase what happened to Peyton, or the fact that her absence is permanent.

I hate grief.

I hate that I can't hide my grief, even when I want to.
I hate that if a stranger learns of what happened, and asks me about my daughter, I am going to cry.

Why do I do that?

A stranger is not worthy of my tears.

I have earned my tears.
In every hope I had for her, and fear I felt for her while she was here.
In every terrible decision that had to be made.
In every moment of this life that I should be sharing with my daughter but can't because she now lives in the cold earth.

I have earned my right to my tears.
A stranger has not.

I hate grief.

I hate the judgement that sometimes comes in that moment.
I hate when they say, "I am sorry," 
but their eyes say "You still cry over this?", 
or their tone says, "What is wrong with you?"

I hate grief. 

I hate that the only thing I have had to cling to through this journey is my honesty, and today I felt like someone twisted that honesty into something else, something perverse.

I hate that my tongue got tied in that moment, and what I wanted to do was scream and tell them how inappropriate they were, or that it must be nice to live in a world where the worst day of my life is just another bonus to something they were trying to accomplish, but I couldn't. 

I froze.

I hate grief.

All of it.

I hate that people can't get that grief IS what it is.
The definition is "a reaction to a major loss." 
That's what grief is.

I hate that people always want to put some damn title on it.
They want to summarize it so they can feel more comfortable about it and separate themselves from it.

The inability to move on.

"Oh I don't have that," they can tell themselves,
"I've never been in your shoes, but if I were, I am sure I would handle it better."

I hate grief.

I hate the stigma that surrounds grieving a baby.

I want to know what exactly society considers a "normal" and acceptable response to losing your child?

Pretending she never existed?

Would that be a more "normal" response?
Or just more convenient?

Either way, if you see the devaluing of the life of a child as "normal," and grieving their absence as "abnormal," then you are the one with the problem, not me.

I hate grief.

I hate it more than anyone watching me go through it ever could.

Grief is messy. 
It is tiring. 
It is forever.

Not the darkest days of course. 
Nothing compares to those early darkest days.

But if you somehow think that a year or two years or ten years or fifty years later, my daughter's life should no longer matter to me anymore, than I don't want to associate with you.

I do not see her as any less deserving of my love because her life was brief.
If you do, than I consider that your shortness of character, not mine.

I hate grief.

I hate feeling like I have done something wrong for experiencing it.

My child died.
I didn't seek that out.
It happened to me.

Nothing about this is a choice.

If I could, I would go back to September 3, 2008.

I was 42 weeks pregnant.
I was excited for her arrival.
I had no idea what was to come.
My life was so good.

The implication that any part of grief is a choice frustrates me.

I hate grief.

Most of all, for making me defend it.

Wednesday, December 8, 2010

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?

Thursday, December 2, 2010

Twelve Smalls Step - A Giant Leap

I am now nearing my 26th week of pregnancy, and if someone were to casually walk through our home, they would have no idea that we are anticipating the arrival of two little babies in the next few months.

There are no half assembled baby accessories in the living room, the second car seat that we know we need before heading to the hospital has yet to be purchased, and the room that will eventually be the Snowflakes' nursery is still a disheveled pile of files and paperwork that we call an office.

There is so much that still needs to be done, and I don't know if it is out of fear or disbelief, but we seem to have let time just tick by in that department without any progress.

In this house the only signs that there were ever any thoughts of a baby are some items along our mantle,

and a room at the opposite side of our hallway, hidden behind a closed door - a door that in the last 26 months has only been opened a handful of times, and most often when curious visitors have asked to see it.

Behind that door, everything is exactly as it was the day she died. The little garbage bag of clothes that Peyton wore in her short life still sits on the floor untouched...

The crib, with cards from well wishers at her shower framed above it, now lays vacant, under two years of dust...

And presents, delivered at or around the time of her birth, still sit neatly wrapped, waiting for the arrival of a child who was destined at birth never to come home...

There are many truths that we have had to face in this babylost world, and for us, one truth is that the little yellow room that we had always referred to as "the baby's room" will never hold that title for us again. Though she never slept there, that room was Peyton's, and only Peyton's, and one of these days when the strength or the courage or the drive are strong enough, it will be dismantled, and a space for me to sit and write will replace it.

I feel her there, in that room. I feel her all around me, and though I do believe in the possibilities of our family continuing to grow, I just could never put another child in that room.

When they arrive the Snowflakes will have their own space, a wonderful nursery created for them in the office closest to our bedroom. Hubs has a million and one ideas that he would like to see come to life in there, ideas that sound beautiful and dreamlike and wonderful, and just the fact that we are going there, that we are having these late night conversations about setting up another nursery, or how life will be once these twins come home, is a big HUGE step for us.

And last night we took another huge step.

For the very first time in this pregnancy, we bought something for the Snowflakes. It was  twelve somethings actually - twelve little Fuzzibunz cloth diapers, and while some may ask, "what's the big deal in that?" when your only experience with pregnancy outcomes has been a devastating one, it can be hard not to feel superstitious about getting too far ahead of yourself.

Over the past six months there have been several times when an outfit, or a toy, or a blanket has caught my eye for the twins, and I have put these items into my online shopping cart at Zulilly or Amazon wanting to purchase them, only to chicken out before hitting the button. But last night was different.

Last night I felt sure.

I felt sure these babies are going to be okay.
I felt sure that they will be healthy.
And I felt sure that healthy babies need diapers, so like a kid in a candy store I shopped various sizes and adorable colors and it was exciting and made me smile and I loved it.

Last night, in these twelve tiny steps, I was able to take a giant leap of faith that this time will be different - these rainbows are coming home.

P.S. Today marks Bedrest Day 90 - ugh.

Wednesday, November 24, 2010

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!

Monday, November 22, 2010

Sometimes it feels like I just can't win.

Ever hear that saying, "you're damned if you do, you're damned if you don't"?

That should be my mantra.

Last week I didn't feel well. I had a terrible headache and kept breaking out into cold sweats one minute, and hot flashes the next. I felt just awful, but never developed a fever, nor did hubs pick anything up from me, so I chocked it up to hormones.

My folks had been planning to visit last weekend but I told them not too because of how I had been feeling. On Saturday, after watching me change my shirt for the umpteenth time, hubs suggested we go for a little drive. He thought the fresh air would do me some good, and I agreed. I have been inside for so long (this Saturday will be three months of bedrest) that I swear I am becoming translucent. I was looking at my feet yesterday and could see my veins through my skin. Hubs joked that I looked like a vampire.

Anyway, we started out on our little adventure of driving to nowhere, and after about 20 minutes, and quite a few turns, I realized that we were in the neighborhood of a few dear friends N & J. I told hubs to turn down their street, and when we did, we saw them standing outside. It was really wonderful to see them. I haven't seen hardly anyone these last three months because of the bedrest, and the few times people have visited I either A) find myself so excited for the company that I overdue it or B) feel so embarrassed to be laying in bed with visitors, that I have sort of opted to just keep people away altogether.

We got out of the car for a quick bit and gave our friends a hug. They invited us in, but after one step inside I felt like I was overheating (not because of their house, because of hormones) and retreated back to my semi reclined position in the car. N stood with me talking, while her husband J showed my hubs some work he was doing in their house. We visited a few minutes longer, catching up on what we had been up to (I obviously have not been up to much) gave each other a hug and a kiss goodbye, and headed home.

This is where the "damned if you do, damned if you don't" piece comes into play.

Last night I was on Facebook and saw that N had posted a status saying she had body aches, chills, a sore throat, and a fever of 102. The poor thing had been laid up in bed since that morning. This is when it dawned on me, N was sick when I saw her, she just hadn't been showing any symptoms yet - great!

I called the OB on call to say that I had been around someone just hours before they had come down with a high fever, and to see if I should do anything. I was thinking Tylenol as a preventative for fever - something along those lines. Anyone who has read this blog for any length of time knows that I am not one who takes putting anything unnatural into my body lightly (only organic foods, nothing with artificial dyes or preservatives, no aluminum in my deodorant etc etc) so even to suggest Tylenol was a big step for me. The OB wanted to know what symptoms N had, and when I told him, he asked if I had gotten a flu shot.

I hadn't.

Why, some might ask, would a person in a high risk pregnancy opt out of getting the flu shot when she will be pregnant throughout the height of the flu season?

It's a fair question. I will do my best to answer it.

For one, I had taken the flu shot about four years back and had a terrible reaction that led to me being laid up in bed for a week with flu like symptoms. Also, no thimerosal (mercury) free shots are available near me, and the thought of injecting myself with something while pregnant just freaks me out. Lastly, and for me this was the biggest factor in making my decision - I have been on bedrest for the last three months and am never around anyone but hubs who got the shot so as to prevent bringing anything home from his work. Seeing so few people I didn't think I was really at risk.

I guess the joke's on me.

Explaining why I hadn't gotten the shot, the OB expressed his dissatisfaction with the decision I had made. He told me about a pregnant patient of his who had gotten the flu the year before and fell into a coma and nearly died. He said that even now, nearly a year later, she was still working to recover.

Nothing like a scary pregnant woman in a coma story to make you feel like an idiot.

I don't know that N has the flu. I don't actually know what she has, she isn't going to the doctor unless it gets worse, but based on her symptoms the OB told me I needed to get on Tamiflu right away as a preventative measure. He said that if taken within 48 hours of exposure, the drug would lessen my symptoms were I to get the flu. I asked him if it was safe, and he said it was safer than getting the flu. This can be dangerous for any pregnant woman, but compounded with the cardiac issues that have been complicating this pregnancy, it gets a little trickier.

At this point in the conversation, I was ready to cry. That's not saying much, I cry a lot these days - hormones, but I was ready to cry anyway. It was all I could do not to break down in tears right there on the phone. (I did break down after I hung up - like a baby - to my sister who assured me that I was not an idiot, nor was I going to end up in a coma. Thank God for sisters!)

The OB told me he wanted my husband to go out last night (at this point it was around 11PM) and pick up the Tamiflu. When I explained that we live in a rural town with no 24 hours pharmacy, he said I could wait till the morning, but needed to get the pills started right away.

So I went this morning and got my pills - asked the pharmacist her opinion on the safety of these Class C drugs, to which she said that my doctor must think the benefits outweigh the risks enough to make it worthwhile, and came back home. I took the first pill around lunchtime, and have felt uneasy about it ever since.

The pamphlet states that it is not recommended to take Tamiflu while pregnant, and there was some study where rats given high doses had adverse fetal affects. I consulted Dr. Google and Babycenter, but found no real comfort there - for every ten stories of women saying they had taken it and been fine, there would be one posted about a woman who was 20 odd weeks along, took the drug and lost her baby. Did she lose her baby because of taking Tamiflu - there is no way for me to know. Do stories like that scare the shit out of this pregnant after loss momma - absolutely!

So there you have it. I feel like I can't win.

I keep people away for months, just to finally see someone who winds up sick the next morning.

I avoid getting the flu shot because I think I am doing the right thing in protecting my babies, only to have to take some antiviral drug that no one seems to have any real answers about.

And now I have to take a drug that I don't feel comfortable with, because stories of "otherwise healthy pregnant women" dying or falling into comas from the flu have me too scared to think straight.

Damned if I do.
Damned if I don't.

Anyone out there ever take Tamiflu while pregnant and have a good outcome?

Thursday, November 18, 2010

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
Susan and Jeff
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.

Sunday, November 14, 2010

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.
A camping trip.

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.

Tuesday, November 9, 2010

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.

Tuesday, November 2, 2010

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.

Monday, October 25, 2010

My grief is like a tidal wave...

Triggers, triggers everywhere.

Reminders of all you went through.
Reminders of all we went through.

Tonight it was a movie. I didn't know it was that kind of movie.
It knocked me through a loop.

Just know baby girl that I am missing you so much. And I am so sorry I couldn't save you. And that I wish I could make peace with all that needs to be made peace with, because I know you would want that for me, but I have not yet found a way.

I found this poem tonight. It made me think of this journey through life without you, though to be honest I feel my grief is more of a tidal wave than a river, stealing my bearings when it comes, but a river is a beautiful image nonetheless.

Missing you always.

My grief is like a river, 
I have to let it flow, 
But I myself determine, 
Just where the banks will go.
Some days the current takes me 
In waves of guilt and pain
But there are always quiet pools 
Where I can rest again.
I crash on rocks of anger 
My faith seems faint indeed 
But there are other swimmers 
Who know just what I need.
And loving hands to hold me 
When the waters are too swift 
And someone kind to listen 
When I just seem to drift
Grief's river is a process 
Of relinquishing the past 
By swimming in Hope's channels 
I'll reach the shore at last

~Cynthia G. Kelley~

Wednesday, October 20, 2010

On Bed Rest, Frustration, And Searching For Hope.

Yesterday I woke up feeling a little overwhelmed. I am ashamed to admit it, because in comparison to the other hurdles of these past few years what's a little bed rest right? That being said, it's like all of my frustrations hit me at once.

I am approaching 7 weeks of bed rest. I thought last week marked 7 weeks, and then counted again to find that, no, I had somehow lost a week in there somewhere, and though the actual number of hours/days/weeks on bed rest shouldn't matter all that much, realizing I had miscounted felt like I had been duped.

I know that I have countless (up to 20 more) weeks of bed rest ahead of me, and that's okay, I am willing to do whatever it takes to get these snowflakes here and healthy, but for some reason yesterday, among all that conviction, I felt the sudden urge to get up and run away from all of this.

Well... to be fair I didn't really want to run away. What I really wanted to do was hop out of bed and clean my house. 

Hubs has been working loooong hours this week (read 6:30AM to 11:30PM long with a few breaks in there to make me dinner etc.) and spent all last weekend doing construction on our house, so to say this place is a disaster area is quite the understatement. There are dishes in the sink that I want to go do. Floors I want to mop and vaccuum. A bored silly little black lab that I would love to take to run and romp and play in the leaves. 

There are so many things I feel up to doing, but I can't.

I think if I felt more like crap, bed rest would be somehow easier to swallow, but barring some achey/crampy feelings, and the unrelenting morning sickness that I have somehow grown accustomed to, I don't feel unwell generally (although the last few days have hit me especially hard and I am wondering if I somehow a- picked up a stomach bug even though I don't go out anywhere, and b- am going to eventually get a bed sore because my rear and hips are really, really tender from all this laying around.)

Yesterday we got some really nice news, and though I can't go into it here, I was excited to talk about it with hubs when he got home. A few minutes before I expected him, the phone rang. 

It was Viacord. 

For those who don't know, Viacord is a cord blood banking service. This is how our conversation went.

"If you bank your child's cord blood," the rep was telling me on the phone, "and they need stem cells, they will always have a perfect match available to them." 
"Yes," I said, "unless the child is born with leukemia in which their stem cells don't do them any good."
"Well," he continued, "babies aren't born with leukemia."
"My daughter was."
"Born with it?!"
"I've never heard of such a thing."
"Well I guess I am that lucky."

He proceeded to give me the rest of his spiel, and with every word that he spoke about cord blood and stem cells and leukemia, the reality of our situation sunk in deeper and deeper. We are not a "normal" expecting couple. We are a seemingly healthy couple who had a child born with leukemia and no one seems to be able to tell us why. 

I hung up the phone and it all hit me - an onslaught of worries and fears about leukemia that I have somehow kept at bay these last 19 weeks with the exception of a few restless, mind racing nights. Up until now, I haven't allowed myself to go there. I have lived in this fantasy world of "that could never happen to us again," and then this call came in and I was forced to go "there", to that terrifying place, and I hated it. 

When hubs came home he did not find his happy wife ready to talk about our good news, but instead a a petrified mess blurting out in tears that maybe I was a fool. That maybe God tried to send me a clear message by destroying my tubes and I was too cocky and too proud to listen. That maybe He was also  making this pregnancy so difficult for a reason, and I was just too damn thick to understand.

Hubs listened patiently, in his normal agnostic-married-to-a-guilt-ridden-catholic sort of way of not understanding my relationship with/fear of God, yet totally respecting my right to my feelings, and then he told me he didn't think that was the case, and that it's okay to believe the snowflakes will come here healthy, and happy, and whole. He told me this in a way that felt somehow rehearsed, and showed me that beneath his tough exterior he was scared too, and when he left a few minutes later to start dinner, I felt like crap for having gone "there" with him, because I know he, too, tries so hard to push those fears from his mind.  

So there I was - not feeling very well, sad, overwhelmed, frustrated by the belief that I can't be like the seemingly 99.99% of this world who say to themselves, "let's have babies," and nine happy months later are blessed with crying pooping wonderfully healthy little children, and then the anger rolled in, and the depression and anxiety, and I re-traced every step I have taken on this struggle paved road to motherhood and sunk deeper into my hole. 

Basically I was having a pity party.

An out and out, true blue, feel sorry for myself and nothing and no one are going to get me out of it pity party, and that's when I saw it - a message posted by my amazing friend Lisette to her status. 

It read:
"Don't let the sadness of your past and the fear of your future ruin the happiness of your present." 

And as I read those words, something amazing happened - they started to feel true. So I read them again, aloud, over and over. I read them until they pushed away the clouds of self doubt, and fear, and anxiety, and though I had been shaken to my core by my frustrations of the day, and the conversation with Viacord, and these last two years- I allowed them to sink it. 

Yes I lost my child to leukemia and no one knows why.
Yes I am scared.
Yes I don't know what the future brings.

But right here, right now, I am pregnant, and these snowflakes are growing and doing well, and that is a blessing not to be overlooked. 

Yes it is okay for me to allow myself to feel hopeful once again.

**This Friday is our big anatomy scan. If you would be so kind, please send my snowflakes your good thoughts/prayers/positive energy/happy karma etc. etc.