Tag: guilt

never knew

I never knew.. never knew pain or despair like this before. I never knew that there is no respite from losing your child. I never knew how hard it would be. I thought I did.. thought I could imagine. .. I couldn’t.. I still can’t. Because I know I am still not at the bottom of it… not at a place I can start clawing my way back up. I still have further down to go. Its always. Its constant. There is no relief. How is that even possible? I got her name tattooed on my wrist the other day. On the drive home I called Tony to see if I could stop at the beach. Of course he said yes.. I needed that time.. To just miss her.. on the beach walking along the ocean. The sunset was incredible and I had music playing the whole time.. song after[…]

nano course

I was invited to this thing called a nano course here at Stanford. Its a small invite only week long conference. The basic idea is to train some parents/foundation people to be liaisons for the medical community. What that means is much of what I was taught went over my head!! Some easy take aways I can share now ..  A lot of the stuff we learned wasn’t specific to childhood cancer.. but translated to all cancers. Like a 3D gel that can mimic tissue better than other mediums. .. a big step up from a petri dish, but more accessible than a animal model. The head of that lab was so jazzed and into it. It was pretty remarkable to see. That leads me to my next easy take away. There are so many cogs in this machine. We heard from multiple different heads of labs. That are all[…]

warrior

Warrior. Warrior mom. Warrior child. It’s a badge given to cancer families in this world I am slowly becoming accustomed to. It has always felt uncomfortable.. awkward for me… I wasn’t sure why. . I just have always known Jennifer wasn’t a a warrior. She was a barely 6 yr old girl who loved to hide from her Daddy when he came home from work and then jump out to surprise him…a little girl who snored like a grown man but always denied it was her. A brown eyed beauty who truly believed in the magic of a princess.    I don’t think any of our DIPG kids are warriors really.. .I think they are more like sitting ducks. Being picked off one by one. I am angry. I wrote awhile ago how it wasn’t a fair fight for her. And I realized this feeling is just an extension of[…]

reflex

I feel like I am circling  the drain right now… my muscles tightened and ready to snap. .. surviving only as a reflex. Its like so much is hitting at the same time. Tony being back at work was the least of it actually. I did ok with it. Set little goals like getting our laundry washed and put away accomplished.. I missed him like crazy. He has been my best friend for years… but we are now connected in a way I can never put words to. The infinity symbol comes to mind though.. I worried for him. How he is going/feeling… and how worried I am sure he is for me. Since he knows… So much will come to a head for me in a few days. My first time speaking. I hope I will do well. I hope I can be a asset in this way to[…]

wait

See you at dinner. That’s what Tony said to me tonight before he went to bed. Tomorrow is his first day back to work. Its going to be a rough transition for all of us. His work has been so good to us.. they are allowing him to come back slowly, 3 days a week. Its interesting, looking at that top sentence I realize how much that thought used to carry no weight. It was normal life.. it is normal life for most people. Maybe thats what makes it so profound a thought for us.. it shows how changed we are. That being apart for a day is scary. What a great man he is. All he sacrifices for us. He missed so much time with her.. its one of the reasons I get so upset she didn’t have that 9 month average time parents are quoted with DIPG. We[…]

simple acts

I just want to write something about my post from last night I have gotten quite a few comments about it. .. All opinions expressed here are my own.. They may not fit for every bereaved parent.. but I share so that people reading can know what its like.. 2.5 months out in one mama’s head.. I know..I truly appreciate how much people want to help and comfort me… .I know that what is said is only coming from a place of goodness and wanting to help.. I write to sort it out in my own head.. and because it might help others to read my thoughts, to sort their own.. and especially because I know how scary it can be to speak with somebody in my shoes.. hopefully sharing what does and does not work for me will help ease some of those fears.. provide a little bit of a[…]

script

My kids love going out to get the mail.. and now they love getting to open it. Today we got our memberships to Happy Hollow.. a semi local, preschool aged theme park. I excitedly opened it… pulled out the cards and rolled my eyes at one missing.. till the truth knocked me back. It wasn’t a membership card that is missing.. it’s my child. Moments like that are sometimes the worst… the ones that surprise me seem to leave the biggest scars. scars of her life..scars of my love for her. I shoved the papers back in the envelope and there they sit. Normally I would be putting them directly into my wallet to be ready… But now they are a scar.. every time I look at them I will remember that moment.. that snuck up on me.. tapped me on the shoulder… and knocked me to the ground. We[…]

clap

Music moves me…music permeated today… this song is the theme song for the first half of today… 2 months come… and gone.. This morning was really hard for me. We drove to Monterey… to be near the ocean and eat breakfast at a little place we really enjoy. Last time we were there was about a year ago on our “baby moon” right before baby Charlotte was born. …she turned 11 months today. Next month she turns 1… I really thought Jennifer would be here for that. I honestly never expected her to not make it to May. At our breakfast spot they have live music. The guy today was amazing…I got his card..  The song choices blew my mind, I cried at the table.. a lot. The hardest I have ever cried in public. I think its hard for Tony to see me like that… openly vulnerable.. to know how[…]

miss her

I miss her. Last night we had a bereaved family over for dinner. They also lost their eldest daughter. It was incredible to be able to talk about soccer in one breathe and each of our daughters ashes in the next. Foods we like to eat and how they spend their daughters anniversary/birthday each year. None of us grimaced at comments… or felt sorry for each other. I think both families hurt for each other.. understand the sorrow.. but all having our own pains.. it somehow seemed to level out. They are 7 yrs further down the road then we are so they were able to give us their experiences over a few years time. That was helpful. There youngest is the same age as Jennifer.. her school “boy friend”. I worried about the age difference since all 4 are older by a few years than our kids.. But so[…]

5 months

****I mentioned before we had really really spotty service on our trip so I didn’t blog but took notes on my phone what I was thinking/feeling****   Our trip was lovely. Truly a escape and so wonderful to be with just the baby and my husband.. but the dark hit hard coming home. I wish I had written when I was there. I think there would have been some positive notes in it.. Like about how it went to work on the business plan for the non-profit… (it went well we had good talks and it was good time spent together) but this now will be the truth I see and feel currently.     It ain’t pretty. I am exhausted.. all the time lately. But I need to write. It will likely be very choppy. I feel like I am bursting at the seams.. so I am just going[…]