24 Hours In Hell

I am grateful to be writing the post I am about to write.

More grateful than you can possibly know.

Here is why.

Bubba has a rash. 

Nothing too impressive. 

Here, check it out for yourself.

We went to the doctor's yesterday to have it looked at. It isn't the first time he has had a rash, he tends to be more prone to baby acne, cradle cap, contact rashes etc, so I wanted to talk about what else I might need to eliminate from my diet.

While there, I noticed a tiny red dot. 

Also, not very impressive.

It looked like a pin prick.

I pointed it out to the doctor.

He pressed on it and it did not blanch.

He pressed on the rash on Bubba's belly.

A few of those also did not blanch.

The doctor told me we had to have blood drawn,

a complete blood count and another test I didn't recognize the abbreviations for,

to rule out some things.

One of the things they needed to rule out... Leukemia.

Yes, you read that right. 

Leukemia.

Even typing that vile word makes me want to vomit. 

I saw stars.

Felt the room spin.

"But Peyton's type of cancer doesn't run in families."

The doctor told me he wasn't concerned.
I tried to believe him.

He said to head over to Quest because they are good at getting blood from little babies.

He said if they couldn't get it there, we would have to go to the children's hospital.

THAT children's hospital.

The one where Peyton lived.

The one where Peyton died.

The one I can't even think of driving past without feeling a part of me die.

The doctor gave us a lab slip and told us not to worry.

Yeah... right.

We headed to Quest.

"You have to take him." I told Hubs. "I can't do it." I started to cry.

It wasn't seeing him get a needle I couldn't handle.

I fly solo on the trips to have them vaccinated.

I couldn't be there to see him have THAT test done.

I was a mess.

I felt suddenly weak.

I thought I might drop him if I took him in.

The whole visit took maybe 15 minutes.

When they came out, Bubba had a single tear in his eye.

"He was laughing right up till the point they stuck him." Hubs told me.

I scooped Bubba up into my arms.

I begged him to be okay.

I cried.

And cried.

And cried.

There was no call last night with results.

I didn't know how to feel about that.

This morning I woke worried.

I called at 8.

At 8:30.

At 9:20.

"_____Pediatrics, this is Anne"

"I'm calling for my son's test results."

"His name"

"______ ______"

"Please hold a moment."

That 'moment' took nearly five minutes.

A myriad of thoughts ran through my mind.

Why was it taking so long?

Were they getting a doctor on the line?

I waited anxiously, repeating "He's fine. He's fine. He's fine. He's fine." with each second that ticked by.

My knees were shaking.

My hand holding the phone was shaking.

I heard a voice at the other end of the line.

"Hello, is this _____'s mom."

"Yes."
"This is Sherry, the nurse practitioner."

"Hi Sherry." My voice cracked. "Do you have ____'s results?"

"Yes I do. They are all normal."

Heavy sigh of relief. "Oh Thank God."

From there we discussed what else might have caused the red dot and the rash. 

None of which were serious.

There are no words for the relief I am feeling today.

Last night I saw images of another life. 

Of a different outcome.

I could see myself there, because I have been there.

It scared the hell out of me.

It made me want to curl into the fetal position on the floor and die.

Today I feel yet another new lease on life.

My son is healthy.

BOTH of my children are healthy, thank God.

And I am so, so grateful.

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.

Fear

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain." --- Frank Herbert Morning smiles like the face of a newborn child innocent, unknowing Winter's end promises of a long lost friend speaks to me of comfort but I fear I have nothing to give I have so much to lose here in this lonely place Fear - Sarah Mclachlin Do you see a theme here? I am petrified. Every day. All day. Of what happened last time. Of whether it could happen this time. Wondering what, if anything, I can do to alter destiny. I find myself praying, and praying, and praying. Even through the confusion and anger and distance I have felt towards Him these last (almost) two years, I keep praying that this won't be like it was then. Praying that these babies will grow, and be healthy, and we will be a normal family. A normal, boring, every day family, where the children come home from the hospital, and grow, and thrive. But the fear... the oppressive, suffocating, debilitating fear. It is always with me. Even through my joy and love for these babies. Even through the hopeful moments, the ultrasounds, the celebration. Even as I write this, wishing I didn't have to, wishing I was someone else who didn't know how cruel life can be... I am afraid. God, if you are listening, please protect us. Please keep these babies healthy, keep my husband and I healthy, keep those I love and care for healthy. Please allow us freedom from this dark place. Allow us our time with the sun against our faces. I have wandered through this side of the universe. I have waded through its depths, and caught myself drowning. I have pushed through what felt impossible, and survived loving and losing her. I have learned hard lessons about life, and what it is to live, and myself. I have done my time. Please God, let that be enough. I don't ask for wealth, fame, or success - but for normalcy, I stand here begging. Please.

On Full Disclosure

I wish that I could write here and say that journeying through grief is an ever upward march toward healing, or that each day brings you closer to happy, or that it is possible to put things you have felt, seen and experienced behind you, but I can't - it would be a lie. Along the way there are many unexpected dips, turns, and blockades that rob you of your breath, instill anger, or throw you back a few steps in your healing. This is what happened to me last week. 

I know that the tone of my last post may have upset some of you, and I really wanted to address all those who took the time to offer me advice, share stories, and post comments from various belief systems, as a means of reaching out to me regarding my current struggle. The vast majority of messages left here or emailed to me were supportive, insightful, and understanding, and for that I am grateful. 

My story is not a clean one. Hearing about infertility on top of loss makes some people uncomfortable, tired, or frustrated. On a few sad occasions, it even compels them to send a note passing judgement on how long I should be grieving, or how wrongly they think I am handling my infertility. Sometimes I wonder if in telling me that I have done something to contribute to or perpetuate my loss, it makes them feel that they can put distance between their situation, and mine. If they can feel a sense of security, looking down at me from their high perch, and actually convince themselves that they are untouchable. I assume pointing a finger is easier for some, than having to accept the ugly reality that you can do everything right, and still have things go so incredibly wrong.


Most of the people who read this blog can, for the most part, understand. Most of the readers of this blog are dealing with their own losses, or struggling with their own fertility, and it is because of these shared experiences that they have found this page. It is because of these readers that I cannot apologize to the few who have reached out to tell me that I should be somewhere else in my grief. It would be a disservice to myself, to this process, and to those who come here for a sense of validation and understanding. 


I have always prided myself on being truthful here, even when my truth isn't what people necessarily want to hear from me. This blog is not a "life after loss and infertility is all rainbows and sunshine" type blog, simply because that is not where my life is right now. I of course see nothing wrong with those blogs (I hope to get there myself one day) but right now, in the thick of it, saying anything along those lines would just be lying.


There are days on this blog where I share what I feel to be some semblence of beauty revealed to me by this journey. There are days where I can feel myself doing some healing, or looking to the future feeling hopeful and optimistic. On those days, that is my truth, and therefore I write about it. On days like this past Monday, where I felt kicked down once again, where I wondered how much a person was expected to take and felt at my wits end, that is when you get posts like "Oh God."

It may surprise some of you to know that messages on both sides of the faith fence brought healing to my heart these last few days. Messages from those who have no faith, those who are strong in their faith, and those who have been tested in their faith, have felt this level of anger at God, and have come through. 

Messages like Kelly's: "The bottom line is...I'd rather walk through it with Him than without Him." 

Or Deb's: "Don't listen to me or the next person or God. Listen to you. And don't feel guilty or less of a person ever." 

Quotations like Elizabeth's:"For now, let your rage flow. And above all, as the poet said, rage, rage, against the dying of the light ( I take this to mean hope.)"

Or insights like Fran's: "People don't know what God's intentions are no more than you or i do. You have every right to feel betrayed by a God who should have been there." 

Each of these was sent by women standing at completely different corners of the faith spectrum, and each was sent with one goal in mind - to let me know I am not alone.

In the words of these women, and so many others, I felt validated in my feeling things that, if not shared, would have just left me to feel isolated. For the most part, even those who couldn't agree with what I had said, still expressed an understanding of where I was coming from. I received notes on FB, comments here, and via email, and with the exception of a few that stung to read, felt incredibly blessed for the uplifting openness of this community.

If there is one truth in all of this, it is that once you have lost a child (or your dreams of a child) regardless of how long you had them with you, a part of you dies. That doesn't mean you stop living or that you don't appreciate what you have. It doesn't mean you never see the beauty in life around you, or that you refuse to go on to spite the world. It means just what it means, that a part of you dies, and as that part dies off, other parts of you are born, and somewhere along the way you try to mesh the two and find your new place in a world that you never wanted to know existed, and that is not something that you can do according to anyone else's timetable. That is what I try to do here... to give a truthful account of my journey, even on the days when my account is not pretty or clean.

I am open here even when I know that what I say may make one reader roll her eyes, or another tell me to get over it. I am open, even when I know that in doing so, someone may use my words against me, or imply that any of this is a choice. I have to be truthful here, if not for me, than for the next person stumbling across this page, walking in the same lousy pair of shoes, looking for comfort and validation that while their feelings may not be something that their friends, family, or co-workers understand, under these incredibly abnormal circumstances, are understandable.


That is why I think we need to have full disclosure here. We need to be truthful, even when it can result in someone sending you a comment or an email that hurts to read. When we have been dealt the blows that we have, when we face questions and conflicts that the average person is lucky enough not to need to understand, that is when we must be the most open. How sad it would be, if in looking for validation and understanding, someone reading these blogs only found more of the same... a message that they need to brush these feelings aside, or heal according to the standards or time frame that someone else has deemed convenient.

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.

Word Filled Wednesday

A Piano, A Pew, Me and You

The Secret Garden Meeting-July

How do I see or imagine my baby now that I do not have her with me?

With her help.

How fitting that this question should come up after having just written this letter.

My Sweet Little Peyton,

Today in church, after receiving the Eucharist, I felt your presence with me so strongly when the other parishioners went up for Communion. The church was filled with the sounds of piano music drifting down from the choir loft. The melody was so dramatic. So moving. Could you hear it too? Were you there? I could see things so clearly, my imagination was so crisp. I felt myself drift off into my thoughts of you, and this "dream" that I was experiencing.

At first I saw you, at maybe five years old. You had on a white dress and your hair was long and brown and clipped up at the sides. There were no tubes. There was no Leukemia. Just a mother and her daughter and their love. You ran with me and we played and laughed and smiled, and though I have never been able to imagine what you would have looked like, today I could see your every feature perfectly. You were just beautiful. I lifted you up in the air and listened as you giggled and called my name. My heart was bursting.

I watched you grow and live and thrive. I saw it all Peyton, your life with me and Daddy. You brought us such happiness. I helped you prepare to be a bride; you beamed with the most beautiful smile across your face. You married a man that made you feel the way Daddy makes me feel, and everything felt at peace and right.

My mind followed our family through the years. I saw myself as a Grandmother. Oh Baby Girl, you were amazing. You had children of your own and you showed them such love and care. You brought so much joy into life for your Daddy and me.

Peyton, it was such a beautiful dream, even if that's all it was. I could see you, feel you, smell you. I saw it all, your life as it should have been; no Cancer, no loss; just your beautiful spirit giving and receiving love, and living out a full life. I felt your presence so close to me in that church pew today, felt such joy in my heart at the thought of you. I know that this experience today was your gift to me; a reprieve. I know you were there with me lifting my soul out of the darkness, even if just for a short while; relieving me of this heavy weight of grief. I know this was you showing me your love. I love you too Baby Girl, more than words can say.

Always,

Mommy

Questions from the Outside

I feel like an outsider looking in

on what should have been,

how my life could have been,

as those around us birth healthy children with ease

and bring them home.

In my joy for them

my heart is breaking,

the emptiness in this house stinging me,

as the questions come calling without fail.

How could this happen?

Why did this happen?

How did I end up here?

When will I get my turn to be a mom like the others,

and say the baby kept me up all night,

without referring to nightmares and second guessing?

As children, when something didn't go right

we asked for a second chance, a do-over,

and received one.

Where is my do-over?

I have begged God,

pleaded for one,

but my prayers have fallen on deaf ears.

I want to do so much of it over,

to make different decisions and see if we could have saved her.

I want to know motherhood as a joyful experience,

and shake off the cold of being left outside.

I want to know when my penance

of pain and guilt and sorrow and tears will be paid.

I want to be let in.

~Kristin Binder