sibling loss

********** I wrote this a few days before the shelter in place happened.. It was one of those posts I wasn’t sure if it was meant just for me to get it out.. or to share.. Tomorrow that 6 year old turns 7… and it feels right to share****** Charlotte is 6 now.. the baby that has now outlived her sister. I wonder.. I worry how hard this must be on her. .. She used to mention it all the time when she first turned 6. “Mama.. Im 6 right?” “Yup” “And Jennifer was 6 right?” “Yes baby” But that’s calmed down since her sister’s birthday.. I never even realized that til right now.. Well I guess until last night.. Charlotte started the questions last night.. randomly driving home from the boys baseball practice. She asked her sister’s last words.. she got mad at me when I told her. She[…]

we all miss you..

Mothers day eve.. I am hiding away in another room… so lucky to be listening to my 4 youngest loves working with their Daddy to make me gifts I am so grateful.. In a way and to a depth that I cannot explain. But there is also this pounding in my head.. A pressure building.. and I realize I am instinctively perhaps even desperately .. listening for her voice .. 6 years baby girl  I thought I adjusted.. Jennifer has been gone.. my God these words hurt.. Jennifer has been gone from my arms longer than I had her in them. So I should be used to it.. I shouldn’t be surprised.. But it has surprised me.. and continued to .. The other night Nicholas came running out.. on the edge of frantic. Jonathan lost the sound box for his Jennifer bear. . a gift of DIPG was the terminal diagnosis. We knew..[…]

How our family is fighting back against COVID-19..

For those of you that don’t know… we live in Santa Clara County in California. A “hotbed” for COVID-19. Let me tell you things still seem to be changing daily around here.. But for now we are on a shelter in place order for non-essential tasks. Why? For me one of my “whys” is my parents. . We share property with them.. We are the only people they can safely see and interact with. Both in their 70’s my Dad in chemotherapy treatment.. I know enough about myself though.. that the easy dedication I have right now towards social distancing will wane over time .. Today and tomorrow I’m all in.. For my parents.. For the kids I know that are immunocompromised due to their battle with cancer.. But after that .. well I’ll admit, I’m scared for when my resolve weakens.. And I realized perhaps I am not alone[…]

I remember..

I promised to come back here to remember.. but 6 years ago today I didn’t write.. 6 years ago today I don’t need a blog to help me remember.. This was the last blog I wrote while she was alive.. All of it.. Every single word of fear. Of overwhelming guilt. And the simplest and deepest hope I have ever had. They are all still true. did i do what you needed?im sorry i couldnt fix thisplease please i need to see you again..  I will never not have those questions.. that simple hope. I believe in heaven. The truest part of me knows it is real.. But still.. when your first baby is there waiting.. its so scary. I didn’t blog.. because I knew I would never need my words to remember. .. She suffered. My buggers. My just barely 6 year old daughter.. She suffered beyond what I[…]

Research and family

  *ahem putting on my unravel Libby hat *  I was honored to get to be part of an amazing and inspiring conference. It was host by PBTF (pediatric brain tumor foundation). I was in the company of around 10 motivated foundation founders and 71 brain tumor researchers. It was humbling to say the least, to be by far the least intelligent person in the room.. but also super educational – I even tried to figure out how to make that sentence sound smarter.. but thats the best I got- We heard about immunotherapy and clinical trials. I was introduced to a few incredible researcher led programs, which was so invigorating to see them helping further another scientists work to be successful. It means one winner in the end. Kids fighting cancer. One of these programs is organizing big data to strengthen others ability to run their investigations. And another[…]

Dear fabulous four ..

final blog continued from this entry.. I love you. I screw up with you guys. I know that. I have all these plans and thoughts in my heads of how I am going to do and be so much better. And I screw it up. Lately its been because I have been scared. Its hard work to be sad. Its hard work to allow yourself to hurt. Big. Real Hurts. Losing your sister is my biggest hurt. And I hope so much it always is. *make smart choices I need her to always be my biggest hurt* But you will have your hurts. Big. Real hurts in your lives. So I hope you learn from me. I hope you learn what it means to be brave and strong. Its not what most people think. Its allowing pain. Its dealing with it. Its embracing it. Its learning from it. And when[…]

Dear Jennifer

..continued from this blog.. which is continued from this one. I love you. I miss you. Its hard to feel both of those things. I’m sorry. I’m sorry I’m not always strong enough to do that. Do you know how sorry I am? I have so much I would have done differently for you at that end of your little life. I’m sorry baby girl. Im sorry I was selfish. I didn’t even realize it at the time. I know you are here. Jennifer. I know it. Right now. I know you are right here with me. I can somehow know you are next to me on this couch. But I don’t know how to feel you. I don’t know how to embrace you without my arms. But I know you are here. I know you are so much wiser than me. I know you forgive me. But I don’t[…]

Dear God

… continued from this post… How is it possible? How is it real that she has been gone for almost 5 years. Why? I know I know I know. We aren’t supposed to ask that. I am supposed to trust in your reasons. I’m not supposed to wish it to be anybody but mine. I don’t know how. She was just a baby. She suffered. So much. They ask me. So many parents of kids like her ask me if she knew. I don’t even know. Why didn’t you equip me better to help her then? Why don’t you help me more now? It’s still so hard. Sometimes. Not all the time anymore. But damnit. Its so hard. And I’m f-ing pissed off at you for it. I’m still so mad at you. I’m always going to be so mad at you. Why? Does she know how to read? Does[…]

cancer beat me

I say the words that I know I will always grieve her.. but lately.. really this whole past year I’ve just been mad about all of it.. And fighting like hell to deny it all too.. Been doing fairly well at it.. And had a distorted sense of pride about it .. But not sure I have the fortitude to keep going like this.. Cuz see I know. I know it’s not fair to my kids to be denying my ache anymore because it starts to impact them. I am far less patient than I should be.. I am ready for them to go to bed before bedtime.. I am always squeezing to just hold it together. I swore I would never ever be like this.. I dug in.. I dug in so hard for so many nights after she died.. And it helped. It allowed me the space to[…]

waiting for the shoe to drop

A common saying I had no idea where it came from .. but its been chasing itself around my head the last few days.. So I had to find out .. according to wiktionary Etymology : A common experience of tenement living in apartment-style housing in New York City, and other large cities, during the manufacturing boom of the late 19th and early 20th centuries. Apartments were built, similar in design, with the bedrooms located directly above and underneath one another. Thus, it was normal to hear a neighbor removing their shoes in the apartment above. As one shoe made a sound hitting the floor, the expectation for the other shoe to make a similar disturbance was created. I was kinda the opposite of this. I honestly was walking around fairly confident in regards to my children there were no other shoes that could drop.. I have been more scared of[…]