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.

On Facing Your Fifth Birthday

The night before you were born, I couldn’t sleep. I laid in the hospital a ball of nerves—a million questions running through my mind. What would you look like? Were you a boy or a girl? What would we name you? Would you have ten fingers? Ten toes?

The night before you should have turned five, I couldn’t sleep. I cried in the shower until no sound came out. I laid in bed, the all-too-familiar aching in my arms returning.  A million unanswerable questions ran through my mind. How could this have happened? Will grief season ever get any easier? How do I make it through this month without letting your siblings know how absolutely, devastatingly broken I feel?

Today I should be sneaking into your room to sing you Happy Birthday and wake you with a surprise. We should have a party planned for you when you return from school, because as a “big girl” now, you’d be going to Kindergarten, or, maybe I would have kept you home to spend the day celebrating together. Instead I am wondering how to make it through this day without you here.

I am wondering how to keep your siblings from noticing my swollen eyes, my tears and heartbreak, because they are so little and impressionable and they deserve all of me all of the time. I don’t want them to know they’ve never had that. I don’t want them to know that before they were born, a large part of me died. I can’t bear the thought that they might look at me and see the brokenness.

Today I should be planning your party but instead I am trying to find a way, some way, to mark this day in a way that feels worthy of you. If the weather cooperates we will head to the beach and release some lanterns, but it’s a poor substitute for the joy we would feel watching you blow out your own candles, marking another glorious year here with us.

I wish I could be that loss mom who only recalls the blessings you brought into this world. In years past I have focused on your love and light on your birthday post, knowing that there are twenty-seven more days in grief season to go to recall the pain, but the reality is that the hurt of missing you on this birthday hit me with such a wave last night that I don’t know how to do this gracefully. 

I don’t know how to find the beauty in the pain when the memories of all you were put through in your short time on this earth are still fresh. Just as I felt five years ago, I don’t know how any of this could happen.  I don’t know how our reality could possibly be that you are not here with us.

Today marks the first of twenty eight days, your whole life, that I got to touch you, but it wasn't holding you in my arms, it was putting my hand in your isolette. Today marks the day that I watched a tiny baby become a little warrior. Today is the first of a limited  number of times that I got to look into your knowing eyes wishing for more for you. It should mark the day we became parents, it should have been one of the happiest days of our lives, but in reality today marks the second most painful and traumatic day of my life—a close rival in emotion to the day we said goodbye. Today marks the day that we were utterly, and completely blindsided by the cruelty that is cancer.

I know where you are your birthday is Happy. I know you are free of pain and surrounded by those loved ones who have gone before us, and I pray you feel a level of warmth and security that is the opposite of the suffocating emotions that I am feeling down here in this broken world. I just can’t seem to convince myself to be happy about facing yet another birthday without you here.

Some Firsts Are Harder Than Others

There is something particularly special, and difficult, about this Fall.

Special in that it marks five years that my heart has beat for my sweet little Peyton, loving her as I do even though she is not here. Difficult in that this year should have held such a magical milestone.

Grief is so strange. There are so many firsts we never had with Peyton. No first steps. No first words, or even first tantrums. No first rides on a bike, or first "I love you Mommy," moments, though her heart beating against my chest when I held her told me she did. 

There were so many firsts that should have been with Peyton that at some point in my grief I almost, *almost, became numb to them. I think that's what so-called healing is, your mind and body deciding to either numb-up, or give up.

I posted this photo on Facebook today, with the following message:

In another life on the other side of the loss universe, I gave you a hug and sent you off to Kindergarten this week.

I imagine that had she been born healthy, I would have had so much trepedation and so many nerves about leaving my child in the care of someone else for the first time. The reality is that from the moment of her birth, to the moment of her death, Peyton was always in the care of someone else, down to my inability to even make decisions over when to feed or bathe her. 

If Peyton were here, and healthy, this would be the moment in time for me to watch as my little girl became a big girl, and root her on as she walked off independent of me, into a new experience. Because of the cards we were dealt, that moment came in the pediatric intensive care unit as I urged her to please let go and be free of the pain of this broken world, when she took her last breath in my arms and was finally, finally, pain-free and at peace.

Even five years later, you never get over a moment like that. I imagine that in fifty years, I still won't.

I received so many beautiful messages from friends, but one response to my facebook post by a dear babyloss momma friend especially resonated with me: 

Perhaps in that other life somewhere our little ones enter kindergarten together, holding hands and filling the room with joy.

So tonight I am holding tight to the beauty of that image, to the thought of all of the precious and much loved little ones from this community holding hands as they walk into their first day in kindergarten, and all the while I am hoping that wherever Peyton is, she knows how very, very loved she is by those of us left behind.

Birthday Bucks, and Band-Aids

Hi all. This September 4th marks five years since our sweet tiny warrior Peyton’s birth. It’s hard to imagine how different life would be if we had our little girl here, preparing for Kindergarten.

To honor what would have been Peyton’s 5th Birthday (9/4) and the 5th Anniversary of her passing (10/2), we are once again Doing Good in Her Name.

We are super excited to announce that Doing Good in Her Name has teamed up this year with the Kacey Rose Foundation, an amazing non-profit formed in the memory of Kacey Rose Mitchell, that provides assistance to families affected by childhood cancer.

This year’s drive is called: BIRTHDAY BUCKS AND BAND-AIDS

Why Band-Aids?

We are collecting boxes of LATEX FREE BAND-AIDS with FUN DESIGNS to be given to the children’s oncology floor at Yale-New Haven Hospital. The hospital only uses plain, brown Band-Aids, and the ones with fun pictures, cartoon characters, footballs etc. really brighten up the day for the kids fighting cancer.

This is an easy and inexpensive way to spread some love, smiles and sunshine to these amazing little warriors, and to help us pay tribute to our sweet Peyton’s memory.

You can purchase and ship the Band-Aids to the address below yourself, or order them online and have them shipped directly through sites such as Amazon.com, CVS.com etc.

Why Bucks?

We are also collecting cash donations to benefit the Kacey Rose Foundation. Depending on the amount raised, the Kacey Rose Foundation will be providing kids who are fighting cancer at Yale-New Haven Hospital with a fun ice cream party, and/or a lucky patient (or patients hopefully!) will receive a cool new gadget i.e. an iPod, Kindle, etc.

Please donate what you can to help us make these kids’ stay in the hospital a little easier.

*Please make your TAX DEDUCTIBLE checks payable to Kacey Rose Foundation and put “Peyton” in the memo field.

In her short time here, Peyton gave us the gift of her unconditional love. Thank you in advance for helping us honor her memory.

Send your BIRTHDAY BUCKS and BANDAIDS (Latex-Free) through October 2nd to the following address:

Happy 5th Birthday Peyton/DGIHN
c/o the Kacey Rose Foundation
P.O. Box 4412 Wallingford, CT 06492

About Peyton:

Peyton Elizabeth Binder was born Sept. 4th 2008 to Andrew and Kristin Binder. Unbeknownst to anyone, our “beautiful, perfect little baby girl,” was born with infant leukemia (ALL w/ MLL rearrangement) the odds of which fall somewhere in the range of 1 in 50 million.

Peyton fought with the heart of a prize fighter through chemo, spinal taps and multiple surgeries, until sadly, on Oct. 2nd, she left this world from her mother’s arms.

During our daughter’s too-short life, we were the recipients of many acts of kindness and compassion, and this is why we strive to give back in her memory. Our goal is to honor Peyton’s life by Doing Good in Her Name.

**The Kacey Rose Foundation is a non-profit 501(c)(3) organization.

IBMD

Our lives go on. We smile more. We laugh more. We love more. But we never stop missing. We never stop loving. ♥ Peyton ♥

Looking forward to a day of peace, healing and remembrance as I celebrate International Bereaved Mother's Day with Janessa's Mommy, who I've spent every IBMD with since losing Peyton, and Stella's Mommy, who I look forward to meeting. 

I pray that on this beautiful Sunday, you all feel your child(ren)'s presence with you more strongly, and a sense of peace in your hearts. 
xoxo

A lot changes, a lot stays the same.

Good Lord it feels like it's been a million years since I last blogged. The initial whirlwind of parenting multiples is finally slowing down a bit. My two are now over two (can you even believe that?!) and keep me running from morning to night, but luckily they're allowing me some blog time today.

So much has been happening here. You may remember me mentioning that Hubs got laid off last August ('12) from a company he was with (and loved) for nearly ten years. It came as a shock and we both job searched for over five months before he landed a new role in a different state, so we are now mid-move, having packed up our life into the back of the family van, and moved to a rental until we can sell our house.

This, of course, brought a lot of mixed emotions on the Peyton front, with her hill being mere minutes from our old house. I don't know, long term, how that will make me feel to be several hours from her grave, but for now I am somewhat okay with it--because I just got to visit her there last week, and will be home nearly weekly for the foreseeable future until we get the house sold.

Leaving our house, on the other hand, was a no-brainer for me. Our beautiful yellow and white colonial that I so loved upon purchase, has been an unhappy place for me these last several years. I cried more tears in that house than I could ever count, and I'd be lying if I said that moving from there is anything other than liberating (though it is very stressful not knowing when/if our house will sell.) It may sound silly to hate an inanimate object, but I truly do hate that house.

It had represented so many things to the newlywed me, that just didn't come to be with Peyton, and while we had so many happy memories there with The Snowflakes, they couldn't dull the pain of all of the memories spent grieving there. I died in that house, or at least the carefree me died there.

Beautiful as it is, with it's daffodils and bay window, that house will always be the place that Peyton never came home to. Even now, four and a half years later, we still refer to the little yellow room with the green carpet as Peyton's room, despite that fact that her decorations are long gone, and the furniture was passed down to her siblings well over a year ago.

The kids are doing well. Really well. Bubba is still incredibly allergic to milk, but other than that, he's bright and funny and eager to learn, and honestly the boy just makes my heart sing.

Squeaks, ironically, has become the more physical/less verbal of the two, though she still Squeaks with the best of them at 72,000 decibels when excited, so we will keep the name going here for blogging purposes.

They are joyful and hard work and in the momma department they keep me very happy, though I must admit that personally I've been in a real funk lately. I don't know if it is the constant running around after them, the years of sleeplessness, the aging that grief has done to me, the reminders that PTSD bring, the stressing and worrying and hyper-vigilance of parenting after loss, the financial stress we have been under, moving, or a combination of it all, but I feel like shit and it shows. 

I am 33 but I feel simply ancient and look even worse and just wish there was some great rewind or delete button that would help me feel something other than worn out by life all the time. 

I envision myself doing something freeing and just for me, like going for a run (which is a funny fantasy since I hate to run), but the reality is that we are in a new town therefore have no one to watch the kiddos, and I don't get five seconds of daylight without one or the both of them (who absolutely refuse to sit in a stroller now) attached to me, so for the time being at least, that's sort of out of the question.

Anyway, that's where we are at for now. 

xoxo

Two years

Today marks two years since my rainbows came into the world.

Two years of laughter and love and sleepless nights and joy and tantrums and learning and teaching and all the wonderment that is parenting.

I have been so very, very blessed.

Today also marks two years since I last blogged here on a regular basis. 

I think of this space often, but life has a way of getting in the way of my writing, and right now, here, in this moment, is where I need to be.

That doesn't mean that I miss Peyton any less, of course, or that I don't think of this community every day. It's just that my heart and mind are in the moment, and that moment is a blessing to be taken in.

There have been so many changes over these last two years. So many milestones. Even as they pertain to how we remember Peyton, the kids' relationship with her is ever evolving. They say, "Bye Baby" when we wave to her grave now, and smile at her picture. I even think I heard Bubba call her "Peytey" one time. 

I feel so blessed by the incredible amount of love and healing that my Snowflakes have brought my heart. They've reminded me that life can be truly beautiful. Even a life once so broken down by grief as mine was.

Two years ago they came into my world and changed me forever.

They shined light in the darkness. Taught my heart to beat again. They are my world, my reason, my all.

They are, in a word, LOVE.

So here is to you my little Snowflakes, on the occasion of turning two.

You make me so proud and teach me new lessons every day. I wish for you a Happy Birthday and may many blessings be upon you always.

I love you xoxo

Momma

Fake It Till You Make It

I'm sure just about everyone in the loss blogosphere has now either watched, or heard about, the Ricki Lake Show, and the episode they did last week on the topic of child loss.

I am over at Still Standing today, talking about child loss, and why the advice Ricki Lake's expert gave to a grieving mother of just five months to "fake it till you make it," was exactly the wrong thing to say.