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.
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)
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.
Depression.
Weakness.
The inability to move on.
"Oh I don't have that," they can tell themselves,
or,
"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.
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?
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.
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.
