Tag: Diffuse Intrinsic Pontine Glioma

the 23rd -12th-

12th. I am supposed to be working right now. I have a follow up presentation at Genetech to prepare for next week. January 12th. Kids are at school and at my moms so I can write it in a solid block of time and get myself prepared. Its a big deal presentation. 1 month until THE 12th. .. ..again.. But I can’t concentrate. Its gnawing away at me. The time that I know is looming and coming too quick.. but also too slow. Because it feels like forever since I held her last. And its only been 23 months.. How will I last the rest of my life?? ..how the fuck will I last the rest of my life???? A year ago we were all packed up for our make a wish trip. Unsure what to expect but so excited for the adventure. Right before we left though.. the first[…]

she was here

I have pulled away from blogging. I have lots of excuses and reasons for it… But I do miss it. The release it gives me.. But especially the connection it gives me to my daughter. jennifer I feel so distant from her right now. So much so I find myself wondering if she was real. If she was ever really here. .. I find myself averting my eyes from her picture. I feel so guilty for it. Like I am denying her.. How much she matters. For the first time yesterday when asked about my kids I didn’t make it obvious she was gone from us. I just answered that I actually had 5 kids and when they asked the ages I only said she was 6.. Nicholas looked up at me and put his hand on my leg. I wonder so much what he was thinking. I presented at[…]

her Christmas gift

We woke up all with Jennifer on our hearts and minds… And as it turns out the feeling was mutual. My niece came over last night and saved Christmas for the second year in a row. She came over to wrap presents for my kids. Without her to talk with and to honestly do most of it I don’t know if it would have gotten done. It is so hard to not be wrapping for her.. So I just avoid it at all costs. As I fell asleep silent tears hit my pillow..  as I was helplessly wishing I could give her a present.. This morning the very first thing Nicholas did was ask my a question about sissy.. He was groggy, wiping sleeping from his eyes and asked if she used to wear boxers.. I was taken aback and at first said no.. but then realized she probably did[…]

dirty truth

Grinding. Heavy. Sharp. Never the words I wold have imagined myself using to describe Christmas time. Short. Sensitive. Hurting. Never the words I would have imagined my husband using to describe us this time of year. Everyday is just hard. No other way to describe it. The ache for her is palpable. The memories of our last year with her. Such a short time we knew she had cancer.. This time of year brings it all back. The family pictures we took.. . Her face swollen with steroids. . A trip to Disneyland. . Presents that barely got played with.. And now. A vast empty. How can it hurt this much? How are we supposed to survive this? I don’t want to do it all over again. But I am. We are. Day after day. Its not fair. Why my daughter? I hate this part of it. The searing and[…]

love wasn’t enough..

Christmas is almost here.  A day I counted down to and used to love. Even more after having children then I did even as a child. It was pure magic to get to experience it with them.. I’ve lost that. I’m sad. I miss my daughter. I look at her stocking and hate that I know it won’t be filled with gifts for her. Although we started a tradition last year that we are going to stick with. Santa will bring something to the whole family in honor of Jennifer. So at least her stocking will be taken down and laid out.. even though she won’t be here to run to it. .. Just thinking about it all makes my stomach hurt… and clench .. And the same words tunnel their way through my brain.. Keeping me up. .. but she’s only 6. just barely 6.  And then my brain[…]

a napkin

**** sometimes I write posts and don’t post them right away. This is one of those written in August**** Trying to prepare for Jonathan to start kindergarten. .It forces answers a lot of questions and fears I have been lucky enough to avoid. But it seems to help a new crop of them bloom. We got out Jennifer’s uniform because its a unisex top and he wants to wear hers. It matters a lot to him. Once alone with these bright blue memories I held them to my face.. desperately trying to find a piece of her to breathe in.. I couldn’t. Tony did find a hair of hers.. We carefully wrapped around the button. I gave him 2 and explained the other 3 we would save for her other younger brother(s) and sister(s). **Bridgette not yet born I didn’t know if he would have 2 little sisters or little brothers.[…]

simple complication

Don’t stop moving.. Don’t stop doing. .. Don’t stop going..I think that’s the key for me right now. The only way I am still standing. ..perhaps standing is a stretch.. But I am upright. Because the moment I am not fully occupied in something the tears find me. A 15 minute drive in the car .. Just me and my littlest girls and I find myself crying. Not hard. And no reason. Just tears. Cold tears. Pointless tears. My workouts suck. I used to take pride in what I could accomplish in my gym. I used to feel freedom working out.. A place to escape mentally and physically. But now its not like that. Now I feel trapped. Doing the movements and going through the motions. But not really throwing myself into it. So the release, the healing, I once found is evading me. Maybe because all my energy is[…]

tomorrow

Tomorrow I will dust myself off.. Tomorrow I will pick myself up … but today.. Today I crumble. Today my 2 year old toddles over to me and asks to be picked up. Today she offers to kiss my owie and wipes away my tears. Today we start to clean up the garage.. and find bags of my dead daughters clothing. Ones she wore and lived in before we knew the string of letters DIPG and the power they would forever hold over me. Today I ache for her so deeply. Today I am a really crappy mom and today I feel horrible about it.. but can’t seem to stop. .. today. today I find watermelon on clothes she never wore but were in her things. ok sissy .. tomorrow ok.. better tomorrow.. i just can’t today.. sorry Today I bury my face in the jammies she wore so often.[…]

unrequited best friend

It’s happening. Jonathan is surpassing his big sister. Last week he sat next to me and he read. He opened up a book and he read. She was so close to it. She really wanted to learn how. Now when I want her to know the words I write I say them aloud. Because she can’t read. I was trying to meal plan for Thanksgiving. Thinking of what I wanted to make.. I was already feeling the missing shape of her in our lives. And I heard him. Finger to page. Word by word. He was reading. And I cried. For him. Proud of him and his accomplishment. And so sad for never getting to have that moment with Jennifer. Soon he will outlive her. Soon it will all be new to me. A mom for 8 years yet I am experiencing all the firsts with my 6 year old.[…]

lucille packard

I’ve made the drive many times in my life .. Yesterday making it memories flooded back. Jonathan needs a hernia surgery. His pediatrician referred us to Lucille Packard. Its scheduled for first thing Friday morning. Initially on the drive yesterday I remembered the evening we first made the trip for Jennifer. Lost trying to find our way to the emergency room. How big and foreign the hospital looked. .. I still can’t believe that just a few weeks later I would know many of the hallways of this place.. That my almost 6 year old would also. How in the beginning we ate at one cafeteria but eventually decided the bigger one.. the one connected to Stanford was better food for her. So we would go there. I had the same breakfast every morning .. after she was out of radiation. I thought about getting it tomorrow. A yogurt parfait with soggy[…]