Tag: DIPG

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 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[…]

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..[…]

the pendulum swings..

4 years. When you become a parent time becomes so flexible.. You can look at your 4 year old and feel like they are still so little.. yet be completely unable to remember life without them.. My guess is that never changes?? I think that maybe even my Mom looks at me like that.. However, I do know my grief is just like that.. I cannot believe its been 4 years.. the pain is still so raw and so fresh.. especially right now that I find myself wondering if I can really survive this for the rest of my life.. and.. I cannot believe its only been 4 years. I forget what it was like to parent a healthy.. living, breathing Jennifer. I hate that. I hate not only that its my truth but I hate giving that part of my pain life..  That part that feels like I can’t[…]

find me again..

Sometimes we resist what we know.. this blog is really just a continuation of this one.. And sometimes urges and pushes are so strong we cannot ignore them.. I pulled the boys out of school and took them on a mommy and boys date to the movies. Coco. None of us had seen it… it was only in one theatre 40 mins away.. But I had this strong urge.. we were meant to go. The 3 of us had the entire place to ourselves. It wasn’t nearly as hard as I thought it would be.. Until the final scene.. when my deepest hope for what its like for me and Jennifer now was on screen. The movie ended and we left the theatre and went on the hunt for something to eat at the mall.. We talked as we walked .. in the best boy talking way.. moving and not[…]

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[…]

 It is warmth. It is joy. It is full.

I’ve always known .. well I guess not always since I never in my wildest fears imagined this being our life.. But since she was put on hospice care I knew our kids would each take their own paths on their grief journeys. I remember them teaching us how our kids would each re-live the loss of their sister as they hit new cognitive and emotional milestones.. So I’ve know it.. It should be no surprise .. but it always is. I share all of this now for them.. An addendum to my letter to them.. (shared here) for them to know what I know. We were recently talking about the girl I believe to our Jennifer’s best friend. How it was 11 years since her family said their final goodbye to her. We talked about what we could do to support Brecken’s family. It brought to the surface each[…]

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[…]