Five years

It was grey the day you died.

There was this weird misty rain coming down and I remember stepping out of the car as we arrived at the hospital thinking, ‘this feels like the day she'll die.’

I knew. In that moment. I knew. Something deep within me told me that you were not going to come home with us. Not that drizzly fall day five years ago. Not ever.

The doctors had given us hope the day before, they actually told us things were looking not-as-bleak and that we should go home and rest up because you had a week full of surgeries ahead. A week full of surgeries. What the hell kind of world do we live in where babies are put through the things you were? I am so sorry, Peyton. More than you can ever know.

We took the doctors’ advice and missed out on spending the last night of your life with you. A night that an intern later wrote to tell me she spent in your room with another doctor, dressing you up in all your cute clothes and having a ‘girl’s party.’

Things were looking up—so why, then, when I stepped out into the brisk fall air to see you, did I know? Is that mother’s intuition? I feel guilty to this day over having had that thought because a good mother, the mother you deserved, would have stepped out thinking, ‘today is the day our miracle will come. Today she will be cured.’

I failed you even in that.

This year is so, so different than the others in facing your death day.

What I would like to do is crawl into my bed, pull the covers over my head, and lay in the darkness with my anger and my bitterness and my longing and my aching arms and my heavy heart and my depression and my ptsd and my never-ending sadness at the thought of what you went through and cry until my eyes are dry and my throat is sore and my body remembers.

I need to cry. To wallow. To feel, really, truly allow myself to feel how absolutely shitty this is… again.

But I can’t.

I know that with the sun of tomorrow comes the responsibilities of caring for your brother and sister and it is they who I need to focus my energies on even if selfishly I want it to be my grief.

In that way I was lucky that you were our first because I was able to go there, to really go where I needed to, to feel what I needed to, to hurt how I needed to. I used to envy the loss moms who had other living children to help them get through the day, but I know better now. I know how much more difficult and complicated grief is when you have to be responsible for more than yourself.

I’m in this odd place of having all I ever wanted with your siblings and still yearning for something that can never be. And though my days are so full right now I feel like I am getting to take less time to tend to my wounds and it shows; in the way my body always hurts, the weight I carry despite my best efforts with diet and exercise, my wrinkles, my awful sleeping patterns and ever present fatigue, and worse—the many ways I feel I am less than I could have been for your siblings.

When they tantrum or fight or do the things that two year olds testing the waters do, I wish I was better. I wish I didn’t get frustrated, or tired. I wish I was one of those supermoms that it feels to me that every other mom is, who patiently smiles through their child lashing out. Shouldn’t I be basking in the glory of motherhood every moment of every day? Isn’t that what’s expected of me as a loss and infertility mom? Aren’t we supposed to walk through life thanking every lucky star that we have been given the opportunity to do this thing that comes so easily to others?

I know firsthand to never take one single beautiful moment for granted and this is why I feel angry at myself for being tired, for being frustrated, for selfishly wanting to lay in my bed and grieve you on your death day. I am angry at myself for being five years out and still feeling so broken at the thought of you. I am angry that your siblings have been robbed of growing up with you. That we have been. That at twenty eight I had to buy a cemetery plot and I became an old woman. That this broken world had to throw in our face the horrific truth that no matter what God you pray to or how well you try to live your life, cancer doesn’t care.

I spent a lot of time wondering where God was when we needed him in the hospital and the early years of grief that followed your passing. I’ve since given up on wondering and even that is guilt inducing because if I don’t hold onto my faith how can I ever see you again in the next life?

Tomorrow marks five years since the most horrific of days. Five years since impossible decisions to live with were made. Five years since I held you knowing I would never hold you again. Five years since I watched your spirit leave your body.

I’ve worked to move forward, as I know you would want me to. I love your siblings with all my heart. I try to be what I think you would want me to be in this world but there is this raw undercurrent that is ever present reminding me that this is always going to hurt.

I’m so sorry Peyton. For what you went through. For what we couldn’t do for you. For all you were robbed of in this life. I am so, so sorry, and so sad.

What does it feel like?

The first year was intense.
The second felt like Groundhog's day.
The third full of anxiety and apprehension.
The fourth?

Next month would be her fourth birthday, so what does this fourth year without my little girl feel like?

Surreal. Distant.

I wonder did that happen to me? All of that?  Was she ever really here? She feels so far from me some days that the distance hurts more than the memories. Did I really watch her die? Was I that woman who cried and wailed and gnashed my teeth in agony over losing her and my fertility?

Sometimes it is so hard to believe that this life, this me, is the same person who lived through that.

Sometimes my days are so busy, and exhausting, and full of squealing toddlers, and diaper changes, and milestones that I almost feel... dare I say it... normal.

I never thought I would find myself here. In this place that feels a lifetime away from that place, and while my blessings are too many to count, and I am grateful beyond belief for this new normal (or as close to normal as I will ever be) I have to wonder at what expense to her memory this is happening.

My visits to Peyton's hill are few and far between these days. Most often they are (like all attempts at accomplishing things with twin toddlers) hurried as I race to say what needs to be said, or to feel what needs to be felt, before one or both of her siblings start to cry, or fuss, or... or... or...

My Snowflakes are now 17 months old. 17 months that have gone by both at the pace of molasses and in the blink of an eye and they are truly all consuming.

They deserve all of their momma's attention... don't they?

But what about her? The littlest big sister.  What about the one who came first and mewed at my chest and comes to me in the quiet time before I fall asleep?

Does she not deserve my full attention too?

There is no handbook for this. No "How-To" guide on how to be a mother here and there at once, and so my children who are here, who press for my attention and fill my day with the delights of their milestones, they get nearly all of me these days. As a result, I feel a distance from Peyton that I never could have anticipated.

Even things I want to do, like focusing on Doing Good In Her Name, just don't happen. I keep saying next week, or next month, and those timelines come and go without progress because my here and now of mothering twins, and trying to freelance for extra money every free second I have, gets busier (and more hectic) by the day.

Of course the love I have for her is no less, but that connection--the way I used to talk to her in my heart and mind all the time--it is fading.

So what does this fourth year without her feel like?

I guess I would have to say that it feels like I am losing her all over again.

Three Years Ago.

Three years ago, baby girl, you left and my world crumbled. I thought, on that day, that I had hit rock bottom. I was wrong. Rock bottom came later. Months later. Possibly years later. Rock bottom came in the crying and the grieving and the depression and the PTSD. It came in the flashbacks and the never ending questioning and the anger. Rock bottom came, and it went, and through all of it you were there, your little spirit guiding me in that way you always do, and we survived.

I can't think about that day without second guessing every-single-decision that we made on your behalf. If the right decisions had been made, wouldn't you still be here?

This year feels different than the last two. The first anniversary of your death was like dying all over again. Last year I remember laying in bed with your siblings floating in my big belly, and crying until I felt I couldn't breathe. I begged them at the time to understand. I explained to them that there are tears that will always come for you. For what you went through and never got to experience and your beautiful little unlived life. This year I find myself treading water, trying with all my might to not go there, not because you aren't missed. Not because I love you any less. But because I have these two little beings here who are dependant on me. They learn everything from me, the good and the bad, and I don't want them to know at 7 months about a level of darkness that it took me 28 years to be exposed to.

I am trying to think of the right words here. The ways to tell you that I think of you constantly. You never leave my mind. My thoughts. My heart. I have your picture on the window sill in the family room, and every day, every-single-day I look at it trying to remember how you smelled, to breathe in that sweet minty smell that was you, and to recall your features. When I went through your box the other day, I was struck by how absolutely tiny your hands were. How could someone with such a huge personality have been so tiny? But you were... weren't you? Too tiny to fight such a giant's battle, but you did, and with a level of grace far beyond your years, and one that I can only strive to ever live up to.

I wish I had the strength to be an advocate for you. I see so many parents lose their children to cancer and they trudge forward honoring them by raising funds and awareness. Truth be told, when I hear about childhood cancer, I curl up inside myself. I retreat. I run scared. I feel ill, and struggle not to be flashed back there. To the helplessness. To the horrors. I was so scared Peyton. Every moment of your life I was scared. And in over my head. When you came into this world, I didn't even know how to bathe a baby, and yet I was being asked to make decisions regarding treatment plans and chemotherapy. It was too much.

If I had it to do all over again, knowing what I know now, I think I would have pushed to birth you naturally. Even knowing that your little body wouldn't have survived it. I just can't help but to feel that in some way, sparing you of all of it would have been kinder. I wish you hadn't had to feel one needle stick. One test. One spinal tap. One surgery. I wish you had been spared, instead floating painlessly from this life to the next. Someday, when I leave this world and we are reunited, I hope to make this all up to you. I like to think we will be in some beautiful field somewhere, with the sun shining, the birds singing, and the clouds floating over, and I will hold you in my arms, watch the light dance across your face, and rock and rock and rock you, until we both feel whole again.

I love you.

Momma

So close and yet so far.

This isn't the post that I sat down to write. I was going to tell you about my frustrations over Peyton's grave. I was going to tell you how guilty I feel that her spot has gone neglected these last few months. How I lie up at night sometimes, thinking about it.

I tried to go up there to fix it up yesterday, but I had two fussy babies on my hands and by the time I got there it was too buggy to get out of the car.

I was going to talk about how it makes me feel to think of Peyton looking down from Heaven and watching me leave the cemetery without even exiting the car because circumstances didn't allow for it. How I was so close to her grave, yet a world away from her (hence the title of this post) that it hurt my heart and I worry she might feel as though she has somehow been replaced.

I wish that I could get the message to her that replacing her - our first child - our brave little warrior - is impossible.

That is what I was going to write about, but as I started writing this is what came out instead.

Yesterday I ran into G, an elderly man that I have come to know during my visits to Peyton's hill. I drove into the cemetery and when our eyes connected, I could see a familiar sadness in his. We exchanged hellos and G proceeded to tell me how down in the dumps he has been feeling lately which came as no surprise since every conversation we have ever had has involved G telling me that he is feeling down in the dumps. I've almost come to expect it. 

G doesn't seem to want or to permit even the smallest bits of joy to creep into his life and to see him on one of his visits feels more like bearing witness to an act of penance as he leans for three hours a day, day in and day out regardless of the elements, against the cold stillness of his wife's stone. There is nothing cathartic or healing for him in his routine. 

The sad truth is that G has given up. He had already given up by the time I first met him, and it is something that has always struck me about him. Even during my darkest days on the hill I found it difficult to understand the level to which G had let go of allowing himself to find any measure of joy in what life he has left. Don't get me wrong. There were days, months, that first year really where I found little joy or humor in anything, but if a smile crept through, or a laugh, I welcomed the change. G does not and this has always struck me as especially ironic as I would peer into the young face in Peyton's picture at her grave, and note that while my daughter was allotted so few days on this earth, G has wasted so many.

He is in good health. He is living independently despite his age. He has family and friends (us included) who frequently invite him to dinner, or over for holidays, but he declines all invitations because to accept one might mean accepting happiness, and G sees this somehow as a betrayal to his lost love. 

I see G's story as a cautionary tale for all of us. It demonstrates what can happen when we, as the grieving, fall into a pattern of belief that to love those we have lost is dependent upon punishing ourselves.

Finding it difficult to find joy or to even want to find joy is a normal reaction to loss. There were days in my grief, many days, when I would let the phone go unanswered. Days when I thought the sky was black like pavement, because I didn't look up to see the sun. Days where I believed my smile might be lost forever... but not every day. Not every minute of every day.

I think it is important to remember that regardless of what stage you are at in your grief, if there are times when the sun pokes through the clouds and you feel joy, even if that joy lasts only the briefest of moments before another reminder of all that you have lost,  it is okay to embrace it. Punishing ourselves to the point of never experiencing joy benefits no one.

Not our families.
Not our friends.
Not the loved ones we have lost. 

G's wife died more than two years before Peyton - which means that this pattern, this slow march towards death, this refusal to enjoy one single moment of life, has gone on for nearly five years.

Five years where new connections could have been made, lessons could have been learned, experiences could have been had.
Five years where even if the overwhelming majority of his time had been spent grieving, G may have felt his suffering ease for a few brief moments here or there.
Five years of moments that would never and could never have replaced his wife or cheapened his love and commitment to her.
Five years of a death sentence that G could have spent living.

When I look at G leaning against his wife's stone, I see so much tragedy in the fact that with her death, so died his willingness to ever again allow himself to live.

Loving those we have lost should not carry with it this kind of a death sentence.
Love is not a punishment.

****

This Sunday is International Babylost Mother's Day. I am wishing for you all a day of beauty, peace, and if possible - joy.

****
Exhale Magazine is hosting its first ever visual arts contest with the theme SEEING WITHIN. There are great prizes available. The deadline to enter is this Sunday. Check out the details here.

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.

*
*
*
*

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.

Guilt.

Guilt -
Will this feeling ever go away?

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.
xx
Momma

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~

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?!"
"Yes."
"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. 

Two Years Ago Today - In Flashbacks

Two years ago today, the fungal infection from the chemo had spread, and you, my perfect pink little Peyton, looked bruised and battered, tired and old.

Two years ago today, Daddy held you in his arms calling you his "Little Sugie Sugie", and we joked through the tears about who had lost more hair over the previous month, Daddy to stress, or you to chemo.

Two years ago today, I saw a group of doctors in the hallway. And then your social worker Mary appeared looking concerned, and I knew bad news was to come.

Two years ago today, more white coats than I could count shuffled into your room. They told us about a plum sized mass that they found in your brain, and I wondered how that could be possible when you showed no signs outwardly.

Two years ago today, you stayed awake with us for hours, staring deeply into our eyes. This was the greatest gift you ever gave us - these moments of bonding with us one last time.

Two years ago today, I received a prayer shawl with a prayer to Our Lady of Mt. Carmel in it from my boss. The note said it was "never known to fail," and I wrapped you in the shawl, praying and rocking and crying and begging in a way that was desperate and pleading and manic all at once.

Two years ago today, the look in your eyes told us not to worry. We believed in you, our little prize fighter. That you would pull through, and be that 1%.

Two years ago today, you stared past me at the wall, to an area where a red painting from your cousin Emily was hanging just over my shoulder.

Two years ago today, the neurosurgeon told us not to worry. He assured us the mass was not affecting anything, and that in two days, on that Friday, it would be easily removed.

Two years ago today, we felt hope and promise about your infection. The surgery the day before had been successful, or so they told us. It still makes me ill knowing what chemo did to you.

Two years ago today, you tried one last time to root. And I told nurse J that you were hungry, and she in turn broke my heart. She said you didn't know what you wanted. That you were only rooting because it came naturally, and that feeding you was impossible because of the blackness that had spread to the roof of your mouth. I am so sorry baby girl. I had no idea it was to be our last chance together in this life for that.

Two years ago today, I still held out hope for your future. I continued to pump and store milk, believing my antibodies delivered through your feeding tube would help you get well and be strong.

Two years ago today, you had come through your first white blood cell transplant with flying colors. We had been up with you all night the night before, hadn't changed in days, and were exhausted.

Two years ago today, the greatest regret of my entire life. At the nurse's urging and reassurance we left you at the hospital around 10PM, to rest up for the two long days of surgery you had scheduled ahead.

Two years ago today, your favorite Nurse Katie and the doctor on call spent all night with you having a "girl's party." I learned about this weeks later, in a handwritten Papyrus condolence card.

Two years ago today, your last night on earth before dying. I had no idea what I would have to do the next day, or how even years later, I would still be struggling to live with it.

Two years ago today, I didn't know yet what it was to hold my dead child. I didn't know how small you would look in your casket, or how permanent your absence from our lives would be.

Two years ago today, we listened to John Legend on the ride home. He asked "where did my baby go," the cruelness of this foreshadow still unknown to us.

Two years ago today, I wasn't that woman who cries out for you on a hilltop. I had never clutched the earth wanting to dig and get my child back, or cursed God for what he had done.

Two years ago today, I went home to rest still believing - that God and prayers and miracles could save you, holding onto my last bit of innocence.

Two years ago today, I still roamed this earth complete. I have since learned to walk on once again, but it is with the limp and struggle of an amputee, adjusting to a new awkward stride while never again feeling fully whole.

Someday it will be five years, and ten, and then fifty, and even then every moment of your life, every decision, every everything, will remain as clear in my mind, as burned into the core of my being, as it was when it happened two years ago. 

I miss you baby girl. I am so sorry I didn't see it coming. If I could go back I wouldn't have put you down for even a second.

If I had just seen what was coming, two years ago today.

I'm still here...

So I think this is the longest I have ever gone without a post. I have so much to write, so much to say. The babies are doing great. I am feeling good just tired - and while I would love to blame it all on pregnancy fatigue, I know the looming date of Peyton's birthday on the calendar has it's hand in my mental exhaustion as well.

I remember being so touched last year at this time by a post by Cara at Building Heavenly Bridges where she wrote:

"I can feel the hollowness reattaching itself to me.
I can sense sadness nearby readying its attack..
I can smell memory beginning its annual journey to possess me."

Her post talked about how Grief Season comes for us, even when we don't go searching for it, and how year after year, though we wish it would, it doesn't get any easier. It was an amazing post that has always stuck with me.

Grief season hit me last week, as Peyton's due date approached, and a rush of emotions came with such force out of the blue that I felt thrown back to those early days. It was an ugly scene. Me, wrestling desperately with a guilt that I thought I had put to bed, and the time of year taunting each memory that I wish I could forget, back into my mind.

I think there is no avoiding Grief Season. Even if I banished every calendar from my home- my mind, body, and heart would feel the days coming to be: her due date, her birth date, the day she started chemo, the day the infection was discovered, the day we said goodbye, the day of her funeral. Each of these hits me with the unrelenting reality: Peyton is gone. She was destined to it before she was born. She is never coming back. Even though we wish it weren't the case, there are no guarantees in this life, and sometimes it is just so cruel.

I am trying to find balance over these next weeks and months. Next Saturday we will attempt to honor what should have been Peyton's 2nd birthday, knowing all the while that anything we try will just somehow fall short.

I am hoping to find a way to breathe through this season. I have so much to feel grateful for this year, so much love and beauty in my life right now - two amazing, miraculous blessings.

But at the end of the day it is not I who chooses how that day will feel. It is my heart, and the memories of all that she was and should have been, and try as I might, wearing a smile through the reminders of such a huge loss is hard.

She is my daughter. Always will be my daughter. And I miss her.

"Blissfully" pregnant or not, there is just no way to sugarcoat that.

Oh God...

Since last Thursday's test, I have been on this recurring loop of angry, bitter, accepting, hopeless, hopeful, and back to start at angry again. What can I say? I am all of these things. I feel gypped, cheated, and screwed. I want to wave my fists at the air, and shout how unfair this all feels. Was it so out of the realm of possibility to believe that God might, just this once, cut us a break?

This post is not meant to bash anyone's religious beliefs. My feelings are actually just the opposite. I am jealous - genuinely jealous, of people who can claim that "in faith He afflicted me," and find comfort, rather than fear, in that relationship with God. That being said, I welcome any comments, religious or otherwise, to what I have written here.

People love to tell me that if God intends for me to have a baby, then I will. What am I supposed to do with that? I am infertile because a doctor didn't take the time to prescribe me some antibiotics when she checked me out of the hospital right after a c-section. Did God intend that she would be neglectful? Does God intend for child abusers and drug addicts to have babies? Did God intend for the woman on last night's news to go drunk driving with her child in the backseat, or that so many children in this world should be born into situations that offer them no real chance at life - war, poverty, disease? 

When I was 17, I walked away from the church. I was a teenager and felt disconnected and just didn't see the point. At 22, and completely out of nowhere, I felt called back. This is a piece of the puzzle that makes no sense to me. How, after finding my way back, could God choose to test me in such a way?  I don't know why I am pouring this all out here today. Maybe because I just don't get it. I don't get why a God who I so loved, a God that I put my faith in, would test me over and over these past few years. The exercise was meaningless, and I know that I have failed. 

I am not a better person, Christian, friend, wife, daughter, or sister because of this. What was left of me after Peyton died, is being beaten and battered by the intense sense of failure, injustice, and anger that comes with this infertility. Am I really to believe that it was God's intention that I not only lose my child, but my fertility to a doctor's oversight as well?

To say my relationship with my faith is strained right now, is an incredible understatement. For the last two weeks I haven't even attended services, something that I have felt drawn to do weekly over the last 8 years. I can't go there right now. I don't know why or what this means, just that right now, I can't.

I guess maybe I am tired of feeling so abandoned by Him. Words in the poem "Footprints" that used to mean so much to me: "During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you." now feel vacant and untrue. 

Not once in the last 19 months have I felt His comfort or compassion carrying me through this loss. My feet don't feel capable of crossing the sand, but instead stand still, stuck, sinking lower and lower with every attempt at righting the wrongs of these last few years. Try to have another baby - sink deeper. Learn of infertility - sink deeper. Attempt IVF and fail - sink deeper. It is like I am trying to claw my way out of this hole, and with every handful of sand that I throw from the hole, a shovel full comes raining down over me, holding me in place.

For those who talk to me about God's intentions, is this, too, God's will? Am I to believe that the God who I loved so deeply would be standing above, loading his shovel against me? 

There was a beautiful sense of security that used to come from my close relationship with God, but it is gone now. That was before. Before I watched the unthinkable happen. Before I witnessed the most innocent being that I had ever encountered, endure pain on top of pain on top of pain with no respite. I begged God to heal Peyton, and He did not. I begged Him to take her peacefully, and relieve her of her pain, and He did not. I begged, and I pleaded, and I cried, and my prayers fell on deaf ears, and the sense of betrayal that I feel from that is overwhelming. 

For months after Peyton's death, I felt alone, and scared, and sad, and distraught, and filed weekly to my seat in the pew, to see if I could feel Him there with me. Week after week I prayed that God could come into my heart to make some sense of all that happened, and week after week, no answers came. I guess I just don't know how can I make peace with that? 

When people tell me that if God intends me to have a baby it will happen, don't they understand that miscarriage, child loss, infertility, and now a failed IVF have clouded that statement to such a degree that it feels simply untrue for me? Can't they understand how hopeless that makes me feel? They might as well be telling me that it just won't happen.

My nightmare...

Last night I went to sleep feeling very optimistic. Our appointment yesterday with the RE went very well, and he told us that my estrogen levels are rising, but remaining under control, and that my follicles are maturing nicely, many of them in the 11, 12, and 13 range (whatever that means.) He anticipates retrieval for the end of this week. After our appointment, I spent a peaceful day with hubs, and we even took in a movie (Bounty Hunter- don't bother). All of these things should have contributed to a restful sleep for me last night, but rest was not in the cards.

I found myself caught in a dream. A very vivid and cruel dream that, though I tried to break free of it, held its grip on me, making waking very difficult. You ever have those dreams, where you know you are sleeping, you know it is a dream, but still you stay stuck?

In my dream I was a nurse. After Peyton died I had felt this deep desire to go to nursing school and help other sick little babies. This lasted about five minutes until I realized that the prospect of seeing another child turn blue and die before me was one I couldn't live with.

I dreamt that it was my first day out of nursing school and I had been assigned to work on the floor of the hospital where Peyton spent her life. I walked from room to room, recognizing the familiar faces of the staff, and as I observed them caring for other patients, I grew more and more anxious. Things, blatant things that I had learned in nursing school about caring for patients, were being completely overlooked.

I became like a crazy person, flailing my arms wildly, and pointing out these missing and crucial steps in care to the doctors and nurses. I was saying things like, "You did this with Peyton too, I know you did. How could you have overlooked this with my child? She was just a little baby! Couldn't you see that? She wasn't a normal kid battling Leukemia. She needed special care!"

The staff just stared back at me blankly, or rolled their eyes, or waved me off with their hands in disgust. They told me I didn't know what I was talking about, and called my accusations "ludicrous." The more they dismissed me, the louder I got, desperate to be heard, and the louder I screamed, the less attention they paid to me.

When my energy was spent, and I could scream no more, I fell over against the wall and onto the floor exhausted. "Can't you see?" I was begging, grabbing at the staff's legs as they passed. "Can't you see that your neglect killed her?"

The staff ignored me, shuffling by as if I wasn't even there. It was clear that my words had fallen on deaf ears as they continued going about business as usual, ignoring me as I laid, manic, in a sobbing heap at their feet.

"You needed to do more..." I kept repeating, "I should have known that... I should have made you do a better job. She came here to get well. I should have made you do more."

Today marks 543 days since Peyton left this world. 543 days, and this dream has me wondering, if not at 543 days, then when?


When will the second guessing end?

Guilt Poem

I talked about you yesterday.
I kept tears from my eyes.
Right up until the topic came
of us and our goodbyes.

And then the choking in my throat,
returned, too much to bear.
I struggled through grief's tightening grip
to fill my lungs with air.

My heart raced. My palms clenched tight.
I wanted to shut down.
I felt those moments pouring in.
I worried I might drown.

Tears came calling once again
stinging hot against my cheek.
And in my mind I played over
that final, painful week.

I thought about the infection
and how it ravaged you.
I remembered the sense of hopelessness.
I shuddered at what I had to do.

I wonder if the words exist,

to convey how it made me feel.

Even all these many months later,

those last seconds feel surreal.

I don't know if the day will come
when guilt will leave me be.
I just pray you know it was out of love,
that I chose to set you free.

~Kristin Binder

I'm So Sorry

I'm so sorry that you were so young
and knew not what to do.
I'm so sorry that the guilt of this
now daily batters you.

I'm so sorry that your thoughts on life
had to gain so much depth.
I'm so sorry that your innocence
left as she drew that last breath.

I'm so sorry that this tragedy
is the only motherhood you've known.
I'm so sorry you never heard her say Momma
or saw her healthy, strong and grown.

I'm so sorry the hurt is always there
walking with you every day.
I'm so sorry that as a new mother
you've never known any other way.

I'm so sorry that your mind replays
all that she went through.
I'm so sorry that you can't accept
it's what you had to do.

I'm so sorry that it happened
and all the pain you're in.
I'm so sorry that God dealt you a hand
impossible to win.

I'm so sorry for the loss of her
and never knowing how or why.
I'm so sorry that you had to watch
your precious daughter die.

I'm so sorry that you've lost yourself
and what you drempt would be.
But most of all I'm so sorry
this poem is about me.

~Kristin Binder