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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[…]

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[…]

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..[…]