I Know What I Don't Know

People often ask me if the twins are my first, and when I tell them about Peyton they usually follow up with comments about how everything happens for a reason, blah, blah, blah.

The problem with this is that I know.

I know that if Peyton had been born healthy, we would never have tried to conceive so soon.
I know that even if we had turned to IVF eventually, and even if I had gone on to have twins, the result of those cycles WOULD NOT be my Snowflakes.
I know that only in losing her, I gained them.

What I don't know is how I am supposed to feel about that.

Twelve Smalls Step - A Giant Leap

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

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

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

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

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

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

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

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

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

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

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

And last night we took another huge step.

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

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

Last night I felt sure.

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

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

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

Sighs and Signs

"Peyton's birthday is in a few weeks."

My husband says nothing, only letting out a heavy sigh and looking off into the distance. I wonder if he sees her there, in those moments when the grief takes him away.

It is an awful reality to face. Another year without her here. Another year that she should have grown and hit milestones. Another year of wondering what, if anything, we can do to appropriately honor her. Another year of knowing that as soon as the anniversary of her birth passes, we face down another long hard month before that of her death.

Another year...

My town has decided that now, during my first trimester, is when they should chip seal and perform work on all of our roads. The smells, and my fears of exposure, have had me on various days heading for the hills. The "hills" on one particular day last month, was the air conditioned respite of Barnes and Noble. I took some time to work on my novel, crafting and re-crafting bits of chapter 7. It is a funny beach read, a little romance, a lot of adventure, and a book that has been a welcome place for me to escape to over the last year.

As I write this now, I am missing that book. Morning sickness has made reading, typing, and editing it nauseating.

So there I was in Barnes and Noble. I had just found out I was pregnant, and though I knew in my heart it was twins, had not yet had an ultrasound to confirm it. When the battery on my laptop died, I started thumbing through the sections of books.

I love books. I love the smell of them. The feel of them. The fresh crack of their spine when you open a book for the first time. I could never own a Kindle, or other reader. I would miss the way the pages draw oil from my fingers, the awkwardness of holding them open. I need the physicality of books.

I find inspiration in running my fingers along their titles. I like to think of all the other authors who have come before me. I like to think that they, like me, started by writing and re-writing with no connections in the industry beyond the deep desire to one day be published. I like to think that if they made it, I can too.

I walked aimlessly through Barnes and Noble that day. I found myself going past self help books, sex books, and finance books. I meandered over to the YA section where I learned that Lauren Conrad, from "The Hills," is now a best selling author. I found my way to the memoirs, reading the back pages, and moved through the cookbooks. Before I knew where I was, I looked up to find myself in the Pregnancy section, and that easy feeling I had all around me disappeared.

My heart caught in my throat when I realized where I was. I looked around, half expecting someone to come along and tell me I didn't belong there. That I was trespassing on private property. I wondered if I could safely take a peek at those books without feeling pain, or ever again truly be a member of that club.

I had joined the blissfully pregnant club once. I had put my whole heart into it, and I had been burned.

The titles called out to me like a series of flashbacks to a different time. A simpler time. A time where everything in life felt possible.  The Girlfriend's Guide to Pregnancy, What to Expect When You're Expecting, Your Pregnancy Week by Week.

Like bullies reminding me of all I had lost, they taunted me and I stepped back, wimping out, too afraid to peruse the possibilities contained within their pages.

I didn't want to read them and get my hopes up. I didn't want to see drawings of developing babies. Those expectations were meant for someone else. Someone naive. They were not for those who have learned with heartbreaking detail that there are just no guarantees in this life.

My anxiety pushed me further and further down the line of books, ready to move to another place, a safer place, when a title stopped me. It seemed harmless enough. Fun even. I reached up and touched its spine: 10,001 Baby Names. 

Okay, I thought. We'll start here. That's not too scary. I'll just flip it open and point, and wherever I land, that is the PERFECT baby name. 

The book creaked with newness as I flipped it opened and pointed. I peeked to see where I had landed. There, beneath my finger, midway down page 198 was a name and it's definition that took my breath away: Peyton: Village of the Warrior.

My warrior. My perfect, little warrior.

10,001 names in a book, and it was that of my lost child that I had been called to. A sense of calm washed over me, as I felt her spirit surround me. She had, in her own little way, reached out to me, and I felt in that moment that all would be okay.

"You're right little girl," I nodded, "you are right. Your name was perfect. And so were you."

rebirth

I could never use Peyton's room for another baby. It is just too full of sadness. I look at the room, and remember what it was to collapse into it. I see the gifts that lay unopened, and the life that went unlived. I pass that room with my eyes cast downward, and only rarely, when my heart or mood compels me to do so, venture in.

I feel taunted at times by that little room. It calls to me from behind its closed door with an emptiness that reminds me of what I will never have. Peyton is gone. She never came home and she never will. The bunny waiting in her crib will never be cuddled. The hand crocheted blanket will never give her warmth. That room remains empty, and in doing so, that room remains cruel.

I have given a lot of thought to that little room. If I had it my way, I might cement the door shut. Or cut it off from this house completely. But then there would be the cement, reminding me of what is behind it, and I would be back at square one.

When we bought this house, we termed the little room with the big windows "the baby's room," long before we even started trying to conceive. It just felt like the perfect little room - bright, full of sunshine with views of trees and birds outside the window. It faces away from the street, so passing cars would never interrupt a child's sleep with the sound of their engines, or the cascade of their headlights across the walls. For months we planned Peyton's homecoming. Decorating the room. Washing and folding tiny clothes. Plugging outlets. Now, over a year and a half after her death, this little room sits stagnant, veiled by a layer of dust and time.

There is this Superchick song "Beauty From My Pain," that has become a bit of a rallying cry for me, a mantra, my theme song. If you'd like to hear the song, it's in my playlist. The entire song really touches me, but especially these lines:

Here I am, at the end of me

Trying to hold to what I can't see
I forgot how to hope
This night's been so long
I cling to your promise
There will be a dawn

After all this has passed
I still will remain
After I've cried my last
There'll be beauty from pain
Though it won't be today
Someday I'll hope again
And there'll be beauty from pain
You will bring beauty from my pain


This song has gotten me thinking about this journey, and though it has been the most difficult time of my life, there has also been beauty, in the form of a gift that my daughter left for me here on earth - my words.

I always "liked" to write, but was too busy to invest any time into it. Peyton, in her own little way, reminded me as she was leaving this world, that I should write how I was feeling, and for me, that has been the "beauty from my pain."

My writing has comforted me. It has been cathartic and healing and therapeautic, and at odd times, through exploring fiction writing, has allowed me to escape all of this, and so it just feels right that when I finally feel peace about packing up Peyton's things, and filling that little room with new purpose, that it should be as a writing space. Long time readers of this blog will say, "yes, we know, you have mentioned this before" and I have, but something I received recently makes the transition feel more possible, and makes me feel a little more brave.

I was speaking with my friend Angie over at, among other places, Still Life 365. Angie is an incredibly talented writer and artist. I expressed to Angie that I needed something beautiful, a piece of artwork to breathe new purpose into that little room. I wanted a starting point, something that would make the process of  transitioning the room from a place of cribs, changing tables, and diapers, to one housing books, dictionaries, and inspiration, feel more possible.

I needed a focal point.
I needed something to remind me of the beauty of this journey.
I needed inspiration.

Anyone who knows Angie, knows that her life has recently gotten a little more busy with the birth of her adorable son, so you can imagine my surprise when she contacted me to let me know that she had something coming for me in the mail. I went to the post office, and found this waiting for me...

Angie calls the piece "Inspiration and Instinct." Isn't it beautiful?

The quote along the top is a favorite of mine by James Thurber. It says, "Don't get it right. Just get it written."

She explained the piece to me, saying :

"The image itself I wanted to make fantastical and accessible. I made your hair long and flowing to give it an air of exaggeration, as well as extend your arms out to encompass novels and ideas. I have an old dictionary/ encyclopaedia, and I thought it would be cool to cut out the definitions for inspiration and instinct...

I thought it would be cool if you were inspiring not just painted swirling ideas, bits of paper, literature, but also these butterflies and moths, each an inspiration. Moths I always associate with night, and butterflies day, so they are supposed to inspire work day and night. I actually thought of painting them, but liked that between your hands was both fiction and non-fiction; painted and from a book."

Seeing this painting, holding it, brushing my hands across the canvas - it just felt "right." It is beautiful, and inspiring, and compels me to write. This painting needs a home, and I know that home is the little yellow room. Having this painting here, I am feeling a little more brave because it helps me to see myself in there, writing away and feeling Peyton all around me.

Thank you so much Angie!

*Angie's artwork, as well as many other fabulous items, are available at her Etsy store. You can visit that here: Kenna Twins

*PRAYER REQUEST: 

Please join me in praying for a little baby boy named Gether who was born on 5/19 at 5 weeks premature. He has overcome many battles (including his heart stopping twice) and needs prayers for strength and healing. xx 

Stop this ride, I wanna get off!

So last week I blogged just about every day. This week...not so much. This is due, in large part, to the incredible roller coaster that this week has been, full of extreme highs and lows.

Here is a recap of some of its ups and downs.

On Monday we got a call that an opening for NEXT WEEK came up in the injections class. The woman told me if we couldn't make that one, we would have quite a wait ahead of us. I guess someone either dropped out, or got pregnant on their own. Needless to say, we jumped right on it. We go on Thursday, and if all goes well and my meds arrive on time (our insurance requires that we use a mail order service) than we might cycle as early as next month.-That was an UP!

As some of you know, there is a journalist, Joel Meares, who has been interviewing me on and off for the last six or so months for a story he is writing for Columbia University about online grieving. That story hasn't actually come out yet, but he wrote an opinion piece for the Australian website "The Punch" this week, in which he defended online memorial sites (there has been some controversy over them in Australia, and rightfully so) and mentioned my blog. Being the nothing special girl that I am, I found it to be pretty darn exciting, even though it didn't seem to sway many minds on the topic. You can read that here if you'd like. -Another UP!

This week, like every week, I am missing Peyton. Waves of grief, like those from her early days Why me? Why her? Why us? Why is cancer our cross to bear? Why can't I be normal and make healthy babies? etc. etc. come crashing down sporadically and with little warning. I usually visit Peyton's grave for comfort when those questions come calling, and this week, doing so did not bring healing. It brought the discovery that someone had allowed their dogs, again, to desecrate her grave. This was pretty hard to take. - This was a Down!

That being said, I met with Officer B yesterday and she promised to take more runs through that area in the hopes of catching whoever is doing this, whether it be the same man, or someone else. Officer B also lost her only daughter, so she understands how hard seeing Peyton's grave disrespected is for me. She understands that it is just another example of my inability to protect my child.

During our meeting over coffee yesterday morning, Officer B also mentioned a grieving mothers group that she was going to, and invited me to come. I did, and in the process met some wonderful women. Our situations were different, it was not a baby loss group, but I made some great connections nonetheless. -Up!

Just when I finally felt the earth moving again, and started feeling hopeful about trying for a rainbow baby, I was met with some devastating news that left me rocked to the core. This news left me questioning everything.

I came across the story of a woman who lost not one, but two of her precious babies to the same type of extremely rare Leukemia that Peyton had. She is the only known case of having more than one child be diagnosed, without the siblings being identical twins, and I know that I should find some comfort in that, but she doesn't know how or why her two babies developed this Leukemia, so there is no reassurance in having heard her story.

Seeing how she, like me, lost her first child to this devastating disease, was hard enough. Hearing her tell how she spent a year of healing before building up the the nerve to try again, only to have Leukemia steal another child from her, well, it was too much to take. The tears and deep sense of fear were unstoppable.

Here hubs and I were celebrating our good fortune in having the chance to try IVF, and then, out of left field, this story came along leaving us to question everything.


Should we try? 
Do we have the right to try? 
Is it selfish to try when this risk may still be out there?

This story spit in the face of my sense of hope. I felt myself spinning, lost, unable to navigate back to a place where my confidence in my right to, belief in, or ability that I can have healthy children would return. The burden of having lost my child inexplicably to cancer buys me membership to a club that I want no part of, a club that forces me to worry that other kids could be affected too.  This was a Down! Down! Down!

I know life is unfair, but why? Why does it have to be? Why can't I scream "Hey universe, I have already had my share of shitty days, its my turn to shine. Back off!"

These questions were weighing really heavily on my mind, and then I heard this. It is something from my meeting last night that I'd like to share with you all.

A woman, ten years out from the death of her son, said she hated when people told her "Time heals." She said, "Time doesn't heal, it reveals."

I meditated on this quite a bit, and it brought me back to a post that I read some months ago by Carly.  In it, Carly shared a present day picture of herself with her children. In the post, Carly said that she wished the old her, the grief stricken mother dealing with the death of her child, could have seen the picture of her future, back then. She said that if she had, if she had known that such blessings still awaited her, she would have felt more hope through her suffering.

That, I guess, is what the woman at the meeting meant by "Time Reveals." 

I hope to one day be so fortunate as to have healing reveal itself to me with time. I pray for the day when I hold my rainbow baby(s) in a picture representing my new norm. A norm full of promise. I pray that I can discover who I am in this baby lost world. Who the "new me," is. The one who can never go back to who she was before, but can still feel that her life has been truly blessed despite all of the pain of losing Peyton.

Until then, until I see that snapshot of a better life, a life that came through this storm changed but okay, I will just have to wait. Wait and pray that time for me, too, will reveal healing.

"Moving On"

Over the last several months, many well intentioned people in my life have told me that it is time to move on. I always wonder when people say this to me what reaction they’re anticipating, usually imagining that they expect it to be something along the lines of:

“Hmmmm… you’re right, move on huh?

I never even thought of that.

 Gee thanks! I’ll give that a try!”

Okay, so that was sarcastic and uncalled for, I know. The fact of the matter is that those who are grieving don’t choose how quickly they heal. Actually, there is no part of grief that is by choice. 


I didn’t choose to have a child born terminally ill. 
I didn’t choose to fall in love with her, to let her huge spirit envelop me and to believe in her ability to beat this. 
I didn’t choose to be put into the impossible role of decision maker when it came to treatment plans. 
I didn’t choose to feel a part of me die right along with her. 
I didn’t choose any of these things anymore than I can choose how long it takes my heart, mind and soul to mend. 


I, like any other sane human being, would like nothing more than to be surrounded by joy. To see my dreams realized and feel the warmth of happiness. To have children and watch them grow. Believe me when I say that I wanted those things yesterday, and the week before that, and the months before that - it is getting my soul to sync up with my desires that is proving to be such difficult and taxing work.

One of the things that most people don’t realize about grief is how incredibly exhausting of a process it is. I have been in this fight, for lack of a better word, for over seven months, on the heels of forty two weeks of pregnancy, an emergency c-section with no time allowed for healing, and twenty eight days of round the clock panic and life and death decision making. It takes time to recover from this. How long? That is for God to decide, even I don’t know. What I do know is that each morning I wake up and offer whatever my best is for that day. Some days I even surprise myself. On others I come up short. 


Each day I try to honor my child, my husband, my family and myself while looking towards the future, but sometimes, in trying to accomplish even a fraction of what I set out to do, my energy is sucked dry. Missing someone is tiresome. There is no rhyme or reason to the ebb and flow of emotions that the bereaved feel: sadness, anger, hopefulness followed closely thereafter by hopelessness, guilt, dismay; but one constant in the process is just how endless the cycle can seem.

For months I have been hearing about this magic pill, this “cure” called moving on. I have been trying to figure out exactly what moving on means, how to utilize moving on, and where I should be moving on to? To me, moving on implies leaving something behind, and leaving any of Peyton behind, even the painful parts, is not an option. I am sure it seems simple enough to those who say it - those who don’t know the feeling of tumbling unexpectedly from the top of the world - don’t know what it is to look in the mirror and no longer recognize yourself - don’t know what it is to try to rub away the lasting empty pain that only a bereaved parent can feel in their arms, but for me, there is no moving on. 

There will never be a day when this loss is not ingrained in me, never be a time when Peyton is not my first born child, or when her absence from our everyday lives isn't felt. I cannot move on, as so many have suggested, I can only move with. And for now, that is what I am exhaustingly working towards - trying to find a way to live this life, to find joy in it once again and to see our dreams fulfilled with Peyton. 
With the memory of her.
With that little spirit.
With her unguarded love.
And even with the unrelenting pain of her loss.