Tag: brain tumor

3 years… almost..

Almost 3 years. I said those words aloud to another DIPG parent last week, a Dad just starting out on their journey.. and I haven’t been able to shake it. .. 3 years. Its been almost 3 years since I last held my daughter. Since I last smoothed the hair from her face.. And whispered in ears.. Almost 3 years since I felt her slight weight in my arms… I wonder. So much I wonder if I helped her. If I said the right things to her.. I wonder if she felt safe.. if she was angry? Was she scared? were you scared baby? I don’t know how to not let the slow onslaught of questions overtake me.  I am trying. I am really trying to stay above.. but the waters are rising. . A slow and constant pounding … a steady and growing swell of grief is swirling around[…]

is 3 real?

Tomorrow morning I wake up to a 3 year old little girl… and it makes me sick to my stomach. and really really angry. I, like all moms, get a touch melancholy about their birthdays.. about how quickly time passes once you are a mom.. But my ridiculous decorating the night before their birthday has helped it become a fun night.. Birthday eve. The other kids get to stay up and help decorate and wrap presents. I make the birthday kid a birthday chair horrifically decorated in balloons and streamers.. Its made me happy to have them turn a year older. A day all about them. . and I like giving them that. Nothing expensive.. just attention and traditions. I’m usually excited about their birthdays. .. even after Jennifer died I still have loved.. maybe even more if thats possible.. decorating and getting the house all ready after the birthday[…]

cool kids table

I’m jealous. Of things I never ever would have imagined feeling jealousy over. But cancer has changed me. Losing my daughter has changed me. I see the bonds other cancer families have created through time spent wandering the halls of the hospital and I want that. When I see them getting together.. those surviving and those still fighting a feel like I am walking around the school cafeteria with a tray in my hand.. with only one table to sit at. Most of the tables filled with parents who haven’t carried a cancer diagnosis and they look away and down when I walk close.. Truth is.. even when welcomed I can’t seem to figure out how to lay my tray down and sit anyways. The table is too smooth too shiny .. I see another one and a part of me longs so desperately to sit there too.. Kids that[…]

down the aisle

So I had my day planned.. . I was going to practice my speech for the upcoming MNO this weekend since I haven’t done it yet .. and then maybe carve out time to blog about how often people are surprised by my smiles.. and the joy they see in my family that is ALWAYS present.. …but Facebook had another idea for me.. Tony and I have talked lately about the love/hate affair we both have with the “on this day” option. The one that you can see old memories. .. moments that you shared a year.. or more ago on that day. Today scrolling through .. luckily after all the kids were at school or napping I was seized by the grainy image on my screen. .. with a caption of bitterly ironic words “not ready for this” Oh how I miss the safety of the sadness of watching my[…]

unrelenting questions

My days seem to be so full of questions. Unrelenting questions that most will never ever have an answer. Sometimes I wonder.. why do things happen the way they do… Why does she send me the things I believe are signs the way she does. . A few days ago I was at Starbucks and saw a woman wearing a sweatshirt I knew from a distance was about brain tumors. .. I debating.. Maybe it was for an adult. Maybe she wouldn’t respond well to my coming up to her. .. but I did. Just like I asked all of you to do. I walked up to her and told her wy I approached her. Her granddaughter had a brain tumor. ..  And I felt a rush of kinship. .. Except it wasn’t. Her tumor was operable and treatable. .. And she was an adult. I think because of that momentary imaginary[…]


flash.. Today it starts I guess.. flashes. Constantly. Of her final weeks. I feel like I am suddenly on the verge. Scared I am about to topple off.. Because I know its not a matter of it.. simply of when. But I can’t do this right now. I leave tomorrow for Seattle to give the amazing Dr Olsen a check from Unravel. Jonathan is missing school and coming with me. I need to not be a shell. .. So I hope by diving in.. and sweeping out the cobwebs of my mind.. maybe I can be more .. Because today was sudden. .. flashes.. moments.. horrible and beautiful. Walking down the hallway past what was Jennifer’s room.. now holding a sleeping baby that never got to meet her biggest sister. a flash that stops me.. Solid. I try to grasp and savor it. The weight of her.. How tiny she[…]

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[…]


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.[…]

done good

We went to an event last night.. me Tony and our.. well we don’t have a official title nailed down.. but basically our COO for Unravel.. It was to support Innovators Network who basically support Project Violet. I am a huge fan of what they are doing and how they are doing it.. far too intelligent for me to explain.. but worth a look! I love that people on the West Coast are starting to stand up and bring their support to these amazing west coast minds.  It was a good experience. I am glad we went.. but I am also left today with a dull ache and sadness. I am trying to sort out why. I thought a lot about Jennifer’s oncologist. How amazing she was to Jennifer and to me. . How very lucky we were to have her. And I thought about the incredible Dr. Monje and her[…]