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

"Nightmare"

I had a nightmare.
Anyone who has read here for a while will understand.

I dreamt I was walking along a concrete path, and everywhere I turned, I was met with one of those little yellow lawn pesticide signs.

The grass all around me was coated in a white, powdery film. I walked carefully and held my hands close to my body, not wanting to touch anything.

The chemicals were everywhere. I was a rat in a maze, turning and turning, looking for a safe way out.

Suddenly I came upon a large festival full of families walking through the grass like it was no big deal.

Young children rolled around and played in the lawn and I felt nauseated watching as the white powder took refuge on their bare skin.

"You have to get that off of them!" I screamed.

No response.

"Don't you know pesticides are linked to leukemia!"

Not even a look in my direction.

"Why aren't you listening? Your children could die!"

Nothing.

The families just went on smiling and celebrating.
Rolling around in the grass as white powder coated their bodies.
Picnicking as it stuck to the food that they brought to their mouths.

"Please listen."  I begged.

But no one did.

They couldn't hear me.
They lived in a different world.

Naive.
Unaware.
Together.

I realized in that moment that I knew too much to ever be like them.
I realized that no matter which direction I traveled, I would always be alone.

**




I am really excited/humbled/honored/stoked/etc etc to learn that my little ole blog here has been nominated for Babble's Top 50 Mom Blogs. It would mean A LOT to me if you all would take a moment to vote for my blog by clicking here. If you sort by popularity I should be on about page 2. If you sort alphabetically I fall around page 13. You can vote for as many bloggers as you'd like. I did. Some of my favorites are also on the list :)

I was going to...

I was going to write a post here about the steps I have been taking in the right direction.

I was going to talk about how I got the courage to go into Peyton's room, and to wash the unused baby clothes in there in preparation for the snowflake's arrival.

I was going to say how big a deal this was for me.

How I must be healing.

How having this beautiful positive event in my very near future was bringing a sense of closure to my pain and anxiety.

I was going to say all of these things, and then tonight I went in to grab the last few items from her dresser, and I came close to the plastic bag - the one on the floor with her clothes in them.

The bag that has sat untouched,
unwashed,
unattended to,
since the day she died.

And I started to panic.

To panic about things that no one else panics about.

To panic that in being in the room with clothes that had chemo on them, maybe I had exposed myself and the snowflakes to something I shouldn't have.

To panic that the chemo on the tiny clothes in that secured bag may have somehow gotten onto other items in the room.

To panic over fears that wouldn't make sense to anyone else because people don't have babies born with cancer.

People aren't forced to start their child on chemo when they are just 6 days old.

They don't know what it looks like and feels like to hold a 28 day old little girl as she draws her final breath because the chemo has ravaged her body beyond repair.

People don't have to wonder two years later if using items that have been in the same room as a bag of clothes with chemo on them are going to equal some devastating exposure.

Exposure.

Exposure.

Do you see a theme here?

Exposure.

How am I supposed to relax when I am afraid of everything?

I see dangers in everything and feel so much pressure.

Pressure to protect them.

Pressure to keep them safe.

I am responsible.

I am their mother.

But how can I protect them when I couldn't protect her?

I tried my hardest, and it still wasn't good enough.

I didn't lose Peyton to some condition that the risks of can be ruled out at some point.

I lost my child to cancer.

EVERYTHING has been linked to cancer.

P.A.L. might as well stand for Paranoia and Anxiety after Loss because that is where I am tonight.

I was going to write something uplifting here about facing forward with a renewed faith in the future.

I was going to,
but then the triggers and the fears came for me instead.

Guilt.

Guilt -
Will this feeling ever go away?

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.

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?

Swirling, Unforgiving, Nauseating, Heart Pounding Questioning

My baby died of Cancer.

Sometimes this very sentence sends me reeling. How could this happen? How could my child, formed of immense love and carried within me, enter this world with the chips so severely stacked against her? A one in fifty million chance, was that some kind of a joke? When you worry about what can go wrong in a pregnancy, you never picture this. It is simply unimaginable. How could her body have betrayed her so cruelly? How could her blood have been riddled with Cancer at its creation? Why were there no warnings? I was her Mother, how could I have not known? Sometimes I lose days on end, lost in the swirling, unforgiving, nauseating, heart pounding questioning.

Since losing Peyton, I feel unable to escape stories of sick children fighting for their lives. Each blog, it seems, has a button with another story of a sick child needing prayers. Click after click, I read these stories and pray that God will show these children a level of mercy and healing that he did not bestow upon my child. And with each story, I wonder how many more Mothers need to leave hospitals with empty blankets, aching arms, and broken hearts?

It is as if I am seeing the unforgiving nature of this world for the first time. How can this be? Was it always this way; a world filled with the suffering of children? How could there have been so many Mothers with broken hearts out there, without me knowing? How could I have been so naive to believe that terminal illness was for the old? How could I have thought that those that I loved were immune to the evils of Cancer? Was I that proud? Was I that self centered?

Last night I stumbled upon a story about a beautiful little girl named Abigail, who is fighting Leukemia, the same vicious disease that took my Peyton. Abigail's chances are much better than Peyton's. She is older, three or so, and has already made it through several months of chemo. She falls into an age range with a 90% plus cure rate, my poor Peyton was looking at a percent of a percent at best.

While reading her story, scrolling through her page, and admiring the strength of faith displayed by her parents, I found myself sucker-punched and unable to breathe. The right side of her blog had a picture of Abigail with her parents, it read "us with our sweet Abigail who was diagnosed with Leukemia on Oct. 2nd, 2008." Reading that, my heart broke at the realization that on the very day that my sweet Peyton drew her last breath in the battle against Leukemia, this little girl was just beginning the fight. I sat there, staring at the date in awe, knowing that our lives, and that of Abigail's parents, came crashing down on the very same day... and I prayed to God to grant this child the miracle that we had so wanted for Peyton, the miracle of a cure.