Some girls are just born with glitter in their veins

She is missing

I knew I had to write tonight.. I used to long for my nights to sit up alone and write.. now its not quite like that. Because I just want to run away from the ache.. and I am getting pretty good at it…

What I write is not what you see.. honestly its one of the parts of all of this that drives me to keep this internal dialog.. aka blogging public. To let people that are around others in the throws of grief.. to let them know even though we look ok.. smile, crack jokes. . we are broken inside.

What I write is the narrative in my head.. my undercurrent.. And its there.. always.. just below the surface. Those that knew me “before” know I used to wear make up. They know I never do now.. Unless its my really good waterproof stuff. I can cry and see you one minute later and you would never know it.. I want people to know it not really for my sake (because its embarrassing and exposing) but more to know for others..that things are not always as they appear.

**The last day I bothered with make-up. The day we learned some cancers are "terminal upon diagnosis"

***The last day I bothered with make-up. The day we learned some cancers are “terminal upon diagnosis”***

I get constant emails and messages from other bereaved parents that I write what they think but cannot put to words. I know I am not alone in this mangle of emotion I spew through my screen. I want people to know .. that even though we look ok.. we really truly aren’t.

We function out of necessity… I wonder sometimes what I look like to others that read my innermost thoughts.. Since I appear good.. strong.. whole in person, but you read and know I am battered and broken and flailing. I am many facets of myself smooshed into one.. mostly for the sake of my kids.

A few hours ago I could have opened up my computer and written pages.. but putting kids to bed and then spending time with Tony stunted my release.. and now I am scared of it.. Even just writing this though I feel that familiar sting come to my eyes.. and notice my breathing is pausing as I stop to hold my breath. Running for days like I have been.. (oh wow just realizing its only been 2) keeping busy always moving.. Just makes this re-connecting that much more dramatic ..  I am struggling with how to juggle all parts of me.

I choose this life. I want to be with my kids all the time. But then I get no break .. to break down. Today Jonathan caught me when tears where starting to find me. Sometimes its ok .. today he hugged me.. strong and tight. But sometimes its not.. sometimes he needs me just to be his Mama.. fun, bossy. .. here and present.

I missed her the past 2 days. More than even the living warm her… just the memories of her. Writing about her and looking through her pictures like I do when I write. I keep notes in my phone about things that come up for me that I want to explore in my writing.. a lot of the notes come from me looking at pictures after I blog to find the ones I want to include that night.. one day I will actually go back and read those notes and write.. but for now.. my days fill up enough of my mind to write..

We leave for DC in 2 days. Thursday. Me, Tony and the baby. The boys will be staying home. I was excited for the trip. A little time for Tony and I and a chance to meet with other pediatric cancer advocates and talk with our states representatives .. It snuck up on me. I realized I had no professional looking clothes.. PE teacher turned stay at home mom means my wardrobe and even sense of style is severely lacking. So I have spent a lot of the last 2 days and nights shopping. 2 shoe stores today trying to find something that fits my freakishly wide feet and covers my beat to hell heels that I wont get a pedicure for.. still a little pink left on one toe from my last matching pedicure with her.. I couldn’t stand the thought of it coming off so I painted over it with clear. Then getting to Jonathan’s swim lessons (we signed him up for another week) my only flip flop broke. . I laughed then at the irony.. now I see it even more. Its just like how I feel now.. Shopping for the fancy shoes ignoring the ones that need my attention immediately until they force me to pay attention. I kept so busy.. avoiding feeling my pain.. admitting to myself that she is gone.. till I just snap apart, forcing me to take notice.wdw201401838590276_6923334454

Jennifer LOVED going shoe shopping. It was the only place I couldn’t take her. She couldn’t control herself in a shoe store. She just had to look and try them on.. and if she needed a pair… look out. She had to try on every single pair… and slipper. Jonathan today kept bringing ones to me he thought she would like… a pair of slipper boots in particular spoke to me. I almost bought them.. Even though she wanted so many different kinds.. no matter how many we bought she would pick a favorite pair and wear them all the time. I have very few hand me down shoes that are meaningful for Charlotte since Jennifer wore the ones she loved till they had holes. .. or until she was cremated. We struggled to figure out what should be her final outfit. But the shoes were a no princess boots. Oh I miss those boots..

I don’t want to go to DC. I don’t want to board a plane without her. Since she was born I have never been on a plane without her. She loved flying. . Last time was our Make A Wish trip.. I wish I had known how soon after that she would be gone. I wish I sat next to her and just held her little hand in mine the whole time.. just appreciating its warmth.. instead of being so sad/mad that we had a reason to be on this kind of trip.IMG_3444 oh if I could just go back.. pull her onto my lap.. breathe in her scent. .. listen to her talk to me.. DSC_0727 I wish I could have learned these lessons that have become engrained into me.. and been able to actually use them without losing her. I am so forever changed.. but in opposing ways that don’t allow the good to pull ahead. It’s so hard to absorb the moment with so much of me gone with her.. I want to be the mom to them, that  I wish I was to her.. To appreciate the moments .. to feel the power in Nicholas’ little hand, the way Jonathan’s arms feel around my neck and how Charlotte will just melt into me. .. IMG_4715

We went for a family PJ walk tonight. Something all of my kids.. living IMG_4711and dead… loved to do. They were so cute… really enjoyed being together. I looked down at one point and noticed Nicholas and baby Charlotte holding hands….

..oh… I was just going to write about how I missed her.. how I wished she was there with us .. that it felt like I was walking around missing part of my vision.. since I piece I know was supposed to be there was missing..

but writing about my youngest holding hands reminded of how Jennifer would often reach across the table, to hold her so very wanted baby sisters hand, when we were staying.. just us girls… in palo alto. I think I took a picture of it. .

**This wasn't the one I was thinking of**

**This wasn’t the one I was thinking of, notice her fancy dress for radiation!!**

Its the most random things that hit and sink me. Fathers day.. I had so many tear soaked days leading up to it… I think I was pretty dried up. Tony and I both cried a few times in the morning, but honestly we were doing ok.. Til my I heard the news my nephews new girlfriend was there.. I started to make a joke.. about how ridiculous I could make myself.. make the poor kid introduce his girlfriend to his godmother..

and then it rolled right into me. full force. .

..she is missing.. she is not part of this.

DSC_0257Jennifer was his god daughter. He would have showed her off.. she would have played shy.. like she didn’t want to say hi to him… but would have kept watching him through her eyelashes.. first breaking through with a coy grin and then a full on laugh. .

But she wasn’t there.

She was not only missing this fathers day… she will be missing every fathers day we ever have. So many new people will come into our lives… into our family and they will never know her.

It feels like she is being erased. She was too little to survive cancer and I am so scared her memory is too little to survive time.

I needed my escape and headed out the front door.. only to be greeted by the males in my family playing whiffle ball in the street. Tony saw me.. sunglasses on.. but he knew. He hugged me. That’s all it takes.. and I was balling in his arms. He moved me out of sight to just let me get it out and then we walked together.. hand in hand.. together in misery and in comfort.

I don’t want to go on this trip.. I don’t want to be a pediatric cancer advocate. I want to be a mom to 4 living children.wdw201401638007302_6923334322 I want to pack for all my kids instead of leaving my boys and my big girl behind. I went to get out Charlottes head bands for the trip .. I still keep them in the bag of hair stuff we combined for the girls while JLK was in treatment.

Tonight I dug into it.. looking at the ones she so meticoulsly picked out for every outfit. I wonder if Charlotte will like head bands? I think she would have.. I wonder who she will be with only 2 big brothers looking out for her… no big sister to help her.

I want to be reading about other people living the horror of child loss.. I want to think I could never survive it.. I want to think I would never get out of bed…

Instead I will write til I am done.. then pour over pictures and finally fall into bed.. wondering how I will survive this and then wake up with her as my first thought.. Right after that last  moment of unconscious to my first thought of the day..

of every day..

she is missing.