Tag: Diffuse Intrinsic Pontine Glioma

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[…]

 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[…]

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[…]

do you get counseling..

I decided to blog about some FAQs and comments that I get..In particular I notice that as time goes on I get more judgmental themed comments on the blog. Im ok with that.. I have a thickish skin. .. But i’d be lying if I said it wasn’t part of the reason I blog publicly less .. I still need the release I get from writing.. but it does make me more hesitant to share.. I am realizing more and more how misunderstood the way I am choosing to do this whole grief thing is.. So I figured why not tackle a few of those constants.. or the ones that have bugged me the most. ** “Do you get counseling, you need counseling**”. I try to explain it this way. One. I need lots of counseling, A “ish-ton” one might say. So I get it in a mulititue of ways.[…]

but Jennifer died..

I am struggling to find the balance. I write and I miss Jennifer so terribly.. I look through pictures to add them to my words. And I see how quickly and special my time with her was.. And I realize how quickly this time is passing me with my surviving kids.. but Jennifer died. Cancer stole her. It destroyed my family. And I know I have the ability to make a difference… The altruistic part of #forTHEMbecauseofher.   But I see pictures like this. . And I realize Charlotte has already outgrown putting her shoes on the wrong feet .. Time is passing. And I miss it. Because of work. Work I never wanted. Work I never planned on doing. I miss it. I miss them. but Jennifer died. Cancer stole her. It destroyed my family. And I know I have the ability to make a difference… So how do[…]