Tag: childhood cancer

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[…]

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[…]

rip current

rip cur·rent noun noun: rip current; plural noun: rip currents a relatively strong, narrow current flowing outward from the beach through the surf zone and presenting a hazard to swimmers. Its October.. the start of my once favorite time of year.. I love colder weather.. Our wedding anniversary.. It marks the start of the coming holidays seasons.. and its the month that I first became a Mama.. I loved this month and everything it represented. I don’t anymore.. and that fills me with immense guilt. Because I have an incredible husband.. Because I still have 4 incredible children to watch enjoy that magic that is this time of year.. and I am still a Mama of 5.. I feel like I should be getting to the point of just appreciating the time I was so lucky to have her.. Of all the wonderful memories I have with her.. But I’m not.. I[…]

kick.kick.breathe.

You ever been in the water.. and you start to get tired and your stroke gets slower and you sink a little deeper .. or like when you are in the current and you stop fighting it and let it pull you … That’s what grief is like I think.. Sometimes its too strong and you simply are unable to resist its pull on you.. Especially in the beginning.. because really you are only just learning to swim. But then you learn.. you have to right? So then you feel it happening and you kick against it.. Just a few strong kicks will bring you back to the surface and you can gulp in air. It happened to me today. pull. kick. kick. breathe .. but first I’ll rewind.. Two days ago I took my 4 younger kids with me to go see their sister. .. the living .. growing..[…]

atta girl Jennifer..

This blog all pertains to this interview we recently had .. please watch if you haven’t. 4 years too late for her. There is more weight to those words than any others in the entire interview for me.. Because I am human.. because I am her mom. and its all 4 years too late for her. .. 4 years too late. That’s because I am her mom.. and I struggle to not see things through those lens. But if I step back. And I remember my little girl I know also. she will wait forever she will fight forever.. Because that’s who she was.. and by donating her tumor.. By raising money to fight DIPG.. we are still letting that be who she IS. She did not lose her battle.. because she is still fighting. I often get caught up in a vicious spiral.. wondering who she would be. What[…]

with the patience of eternity

I know I need to write.. But Im scared to. But then again Im scared not to. I find myself aching for her.. I find myself wanting to hide and just be with my kids.. (and husband) shutting out the rest of the world. I am strong. I am the second strongest person I know. I am broken. I am the most broken person I know. I am crying constantly it seems.. just a tear.. maybe two.. Then it dries up. My pain burrows deep and hides itself away.. I freeze. I sat down now to work on our speeches for upcoming Night on the Town in Sacramento.. I started to pull up pictures for Tonys presentation.. and I felt that familiar buzz… a weight on my chest.. forcing all the air out of my body. an invisible noose tightening quickly around my throat. ..  I exhale.. and its gone.[…]

10th birthday

10. she should be 10. Double digits. what a big deal. Except she isn’t here.. This is the time of year when I can really remember her.. When I have moments.. days even I can remember so vividly.. Hauntingly vividly.. When she was sick.. when she was dying.. But not her 6th birthday.. There are so many holes in that day.. So I ask about it. I ask to hear the same stories .. Where were you? Who told you? What did you think? .. I guess thats really all I ever want.. To hear your stories. . over and over again. . She should be 10.. but she is forever 6. .. And all we have is stories and memories.. My brain stumbles often.. So if you have 1 or 50 stories of her.. If they take you an hour or a minute to tell.. please . .. please[…]

six

Six. Never has a number had such power over me. Forever 6. My eldest child is eternally six years old.. Told on that birthday that she wouldn’t make it see seven. Her younger brother is 7.. and tomorrow her baby brother will also be 6. how? How is that even possible. Her bubbas.. I woke him this morning like I do the every morning before their birthdays.. Welcoming them to their final day of their current age. . But as I said the words .. ” Wake up to your last day of 5..” I felt a rush of cold through my veins. A cold and palpable fear. please help me keep him safe..  I’ve heard that military/police term of “watch your 6”.. and its resonated lately.. I had a feeling as to what it meant.. But I looked it up to be sure.. the defintion.. “6:00 is what lies[…]

What’s it like- living with child loss

Whats it like? What’s it like to be you? I see it. I think that is probably the number 1 question I see burning behind people’s eyes that is never asked. Though it’s hinted to… in the escape of words like I can’t imagine. .. So I’ll tell you.. It’s showing up to drop my son off late at school.. walking him into the cafeteria to get one last hug as he drops off his lunch box. Something is going on.. lots of kids and fun. Its seeing a mom who asks if I am ready for the craziness.. It’s asking what and hearing that its the 3rd grade arcade day. Its the wonder for just a moment.. until you can feel the ground move beneath you.. She should be in there.. And the gym that was moments ago just 15 feet away somehow becomes miles away.. at the end[…]

earthquake country

I live in earthquake country.. I always have.. but now its more. Now I exist in it too.. I am always ready.. vigilant for any potential tremors. But that’s what makes them so scary .. you never know when they will hit.. Even when they start.. you just never know how high they will register on the Richter scale.. I already know. As my fingers hit the keyboard I already know .. this might be one of those posts I never publish.. Because I know whats eating at me. .. something I struggle too admit to myself .. let alone out loud.. My jealousy. My heartbreak in the middle of others joy. The birth of my niece. Yes of course seeing a healthy baby… of remembering what it was like to first have my Jennifer placed in my arms.. Of wanting so desperately to go back.. to get those years[…]