Category: DIPG

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[…]

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[…]

Mrs Barbara Bush

  Did you know the former first lady lost her little girl? When she passed away.. (ok the day before I was the dodo that saw the one erroneous posting and shared it!) .. I was overcome with emotion. So happy for her. In such awe and also such fear. Awe for the impactful life she was able to lead after losing her daughter. For being the wife of a president and then raising one. If she could do that I can do this.. And for being brave enough to share about her daughter in the days when that was taboo.. and fear.. She lived so long. So long in such heartache. Its only been 4 years .. but its tiring.. Its a grind. The always present undercurrent of missing Jennifer.. Its seems impossibly daunting to keep this up for another 60 years.. And then the immense guilt over that..[…]

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.[…]

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[…]

dug in and dig out

dig in.. and you will dig out.. I have dug in.. enough to somehow both give me a head ache and release me from the one that has been lingering for weeks. Jennifer loved chocolate cake.. and a ton of icing. She had celiacs disease and ate gluten free.. in a time before most people knew what that was.. I pre-made cupcakes for her and froze them so they were ready for any party. Icing on the other hand could be trickier.. We found a solution though.. We would melt a ton of chocolate chips and pour it on the cupcake and let it harden into a massive chunk of chocolate on the top. And she loved that.. She loved having a giant piece of chocolate to gnaw on and get all over her face.. I don’t know what it looks like where she is.. I don’t even know what[…]

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[…]

reality bites

I had this false perspective of reality.. I thought it was a simple thing.. As it turns out it is anything but.. We can’t change our reality .. but we certainly can deny it. This still feels unreal.. Like it can’t really have happened.. My daughter can’t have died.. I think I am learning .. that it’s not so much that we get stronger in child loss or that the pain dulls but that we simply get better at denying it.. As horrible as it is to admit I think that’s how we learn to survive. . We are able to convince ourselves it wasn’t real.. that our child wasn’t really here.. So they can’t possibly really be gone.  so when it hits.. it is sharp and it is biting. It can completely steal my breath and knock me out at my knees.. crippling. Right now I am hurting.. I[…]