Month: December 2014

what she said

I am not alone in this. So much of what I feel other parents are also feeling. This is what my friend Kristine wrote on the McKenna Claire Foundations FB page yesterday “We are on a major organizational binge at our house. Our life has been chaos since the day McKenna was diagnosed, which will be 4 years in January. I was cleaning out bags of “stuff” that have been piled in corners of closets or dressers. What I found this morning is what you see pictured above. This was McKenna’s final Mother’s Day gift to me. It was not lost on me thatit was covered in butterflies and that the gift itself was a blue butterfly keychain. What undid me was what she wrote on the back. Reading her words, written in her shaky post-tumor writing, brought back every ounce of the hopelessness, guilt, and pain that I have[…]

the longest line

This time last year Tony and I were on the best trip of our lives. A trip to surprise trip to Disneyland with just Jennfier and baby Charlotte. She was 7 months old so totally easy and flexible. The trip was all about Jennifer, what she wanted to do and when she wanted to do it. It was perfect. We had so much fun. She had so much fun. She was so happy to be all done with radiation. We thought this was just the start of a honeymoon period most kids with DIPG get.. a time to make memories and pack a lifetime in. We were so lucky to get gifted two incredible days there. One with a tour guide taking us through the crowded park and the other day with passes for her favorite rides.    We will forever be grateful for the generosity that allowed us to[…]

the first christmas

Time is divided into B.C and A.D times. Yup that pretty much sums it up. Before cancer and after death. This is our first Christmas in this new era. Two down.. one to go. This afternoon we head to my parents for our final Christmas “celebration.” I used to love this time of year. Looked forward to it and did my very best to absorb all of it. This month leading up to it though was filled with a dread.. A heavy cloud of grief that got heavier and heavier as the month went on. Until about 2 days before Christmas, then my body said.. nope. Thats enough of that. And my emotions got completely locked outside of me. Christmas Eve I felt like I was having a out of body experience. I felt totally drunk.. although I was completely sober.. my face even felt a little numb. And then[…]

a couple of songs

We did end up all going to the family baggo tournament at the same place we had our “goodbye to Jennifer party”. Not a easy decision since at first Jonathan said no.. we followed up with him and he still said no. But once he knew Daddy and Nicholas were going he waffled on it. What a hard thing for Tony, to feel pulled in so many directions.  So we talked .. together and came up with a game plan. Exit strategies and we packed the iPad to have something to really distract them if they needed it. I should mention Tony and our nephew took 2nd place in a nearly 3 hour tournament!! I told you my family is insane (if you are bored here is a video!) We talked off and on the 30 minute drive about memories. From the goodbye party and from baggo in the past.[…]

angels

  All these things I am being forced to walk through. Nothing feels real right now.  Its like my body.. my heart.. my soul cannot accept that she is gone.. that I have to do this. These holidays.   Something in me snapped on Friday. Broke apart. And I cried off and on all day. I hate it. That cancer stole my daughter.. but also my 3 youngest babies childhoods. This shouldn’t be their memories for this time of year. But I can’t always stop it. I try .. I do try. Because I know it impacts them. I know how they are my little men and want to protect me. .. do anything to keep their mommy from hurting. Friday morning it was a cluster of hits that took me down. . Jonathan worried it was the song on the radio he had said he liked.. so he told[…]

yes

Yes. Yes. Yes. I am eternally grateful for the yeses. And eternally sorry for the no’s. A year ago we did a last minute tea party. At a fancy tea party place. We had a lot at our little apartment together. It was certainly a daily ritual and one of my most cherished memories. She was so serious about it.. but always wanted it to be a little different. Somedays we filled the cups with water.. sometimes we ate food. Other times it was all pretend. She invited different stuffed animals .. but pinkie was always there. The reason it worked so well though.. Jennifer’s early Christmas present from my sister. We went to Ikea and Jennifer saw a purple tv tray. She told Auntie she wanted it for Christmas. We laughed. Thought she just really had to have something bought for her. But she insisted she really wanted it.[…]

muscle memory

We saw Santa. It was anti climatic. Which was a good thing actually since so much.. so much has been so big lately. Only Jonathan even sat on his lap. It was easier .. not so vividly missing her since the photographs I took were missing most of my kids. But a friend and I talked. How we both knew.. if she was there they all would have followed her. They always did for things like that. Sissy made them feel safe.  Tony and I had counseling last night. Mostly it centered around raising kids through this loss. Trying to sort out what is best for them. My family is crazy. We take all things competition very seriously. Even Baggo, (I googled it for you). A few years ago a tournament was started. Round Robin. Team names. Costumes. We do it at one of the high schools one my brother[…]

donations.. come in all sorts of ways

Friday was another 12th. Marking 10 months since I held my daughter last. I have promised myself that I will spend every 12th doing something for them because of her. This month for the first time the “them” wasn’t my 3 surviving kids.. I did it with my kids.. but did it for the kids still in the fight for their life. This month I was privileged enough to give Dr. Monje the $70,000 check from our first years fluttering campaign.   We had prepped the boys for it.. let them know we were going to a lab where the scientists are working to try and find a cure. Told them we were bringing a donation from the families that raised money by fluttering.     We were mostly worried about how it might be for Jonathan. Earlier that morning I had talked about my 2 sickie boys to them. About how they[…]

10 months

  JENNIFER JENNIFER JENNIFER jennifer.. I miss you. With every single cell of my body right now. I knew my heart would break when you left. I didn’t know it was even possible for my whole body to break.. for my heart to be so shattered .. for my soul to cry out for you. I watched your video tonight. The one we played at your services. And I wanted to scratch my own skin off. Pull my soul out of this broken body.. and throw it up to you. 10 months. Seriously. How is that even possible? Its like it was yesterday .. and forever ago. How am I going to make it through Christmas? I don’t want to. I don’t want to do it without you. I don’t think I can. Im not strong enough Jennifer. I look at your stocking. I want a little girl to shop[…]

e.v.e.r.y.t.h.i.n.g

Tony and I went to our counseling tonight. .. well if I am being honest, tonight Tony sat on the couch during my counseling. It quickly morphed into being all about me tonight. We talked guilt. My guilt over everything. e.v.e.r.y.t.h.i.n.g. Its crippling. And I am not sure how to get over it.. get through it. I will never have the chance to say I am sorry. Never have the chance to make it up to her. No do overs. All my successes with Jennifer have happened .. as have my failures. Thats a bitter cold reality for a bereaved mommy. I feel trapped and overwhelmed in the dark memories. Of where I was.. who I was right now 10 months ago. Holding her. Talking to her. Letting the last of our family come say goodbye to her. Why couldn’t I stop this? Why couldn’t I save her? my baby.[…]