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a well earned week

I feel like there is a day for everything. From the fun.. like National Garlic day ( April 19th) and National watermelon day (August 3rd) to the serious National Pediatric Hematology/Oncology Nurses Day and National Organ Donors Day (Feb 14th). There seems to be a day dedicated to most things.. But some deserve more than a day.. Its National Volunteer week.. And one thing I know for sure.. people who give of themselves. .. they deserve the thanks. I honestly didn’t even know this was a thing when I wrote my last post.. That I think explains why our volunteers are so important to me personally. But it goes beyond my own personal need for Unravel. It goes towards the researchers and the money YOU all have raised. I have seen so many people and especially families that have dedicated and donated so much of their time to Unravel.. with one[…]

belated and genuine thank you

When Jennifer was still here fighting and I started blogging I feel like everyday I had big realizations and break throughs.. After she died it was the same. I was constantly making huge deep connections within myself.. Now its rarer that it happens.. In part because its just harder to carve out this much needed time to sit and “talk” with myself.. And because maybe that’s another sign of my growth within this journey.. Not having the need to be making so many life defining or changing realizations.. But it happened recently.. and once they started I feel like its been happening a lot.. I have so much bottled up inside.. not so paitiently waiting for me to make the time to sit like this.. To take it out and look at it and begin to understand it. Texas. We recently went there for Unravel. .. I’ve always wanted to[…]

my question for you..

What does don’t be sorry be active mean? It means I know you are sorry I lost my daughter .. I know you are sorry she suffered.. I know you are sorry she is gone and sorry that maybe even you miss her too… But that sorry. Its not enough. Not enough because she is still fighting.. Her cells .. living and growing pieces of her.. they are fighting .. SHE is fighting but she needs help. Money. Awareness. Help to make both of those things happen. Sorry isn’t enough for Jennifer. And. And for your kids. Sorry isn’t enough for any of our kids. Sorry doesn’t stop the tragedy.. the death…the suffering from happening. It just protects your eyes.. unless.. . it get drops inside your own home and you simply cannot avert your eyes any longer. Let me pose this question. Would you do more? Would you do it[…]

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[…]

it changed me.. over and over again

New normal. New life.. Ive always known this was my truth. .. One I have lived many times before. I think our lives constantly change.. Often times in ways we don’t realize until we look back. Life after infertility treatment.. I thought it changed me. Changed the way I related to other people.. changed the way I looked at getting to be a parent. .. Becoming a parent, each time, I thought it changed me. Each of these little people I have been given is so different and they have changed the way I view the world. Hearing the words “Your child has cancer”. I thought it changed me. It made me question everything I had previously thought about the world surrounding me.. February 12th taught me those things altered me.. but that day.. her last day. That day has truly changed me. I have many of the same qualities[…]

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[…]

the 3rd 12th

Its almost here.. That invisible yet powerful clock has almost come full circle.. .to mark off yet another year without the girl that made me a mommy. i thought that was it. i thought the brutal road to being your mommy meant i paid my dues. ..   Sunday will mark 3 years.. 3 years since she I last touched my Jennifer’s warm skin. .. last heard her jagged and raspy breathing. I was so scared she wouldn’t let me be there .. be awake when she died. 3 years ago I was asking myself unanswerable questions.. ones I still am asking today.. That day .. those worries I wrote about then.. I was right. It is EXACTLY how I feel today. .. She let me though.. She gave me so many gifts those final hours. Through her suffering she remained the girl she had always been.. Kind. Giving. Generous. Trusting.[…]

my friend Grief

Its February. Its here. This month that fills me with such dread.. Its here. And with her she brings my old friend.. Grief. True. Utter. Grief. Grief that hollows me out. This friend.  The one I can’t remember not knowing, yet somewhere along the line, I was able to put in some separation.. Able to call on her .. versus her calling on me.. With this month that friend is back. Holding my hands .. matching my every step. I feel like I am being slowly pushed towards an invisible line and everything in me is fighting against it.. I’m losing though. . Ive always lost to February. I find myself constantly crying. Every time I get in the car .. Even those times my mind feels blank or preoccupied .. the moment the door closes I feel that familiar prick and sting in my eyes.. Grief. She grabs my[…]

3 years… almost..

Almost 3 years. I said those words aloud to another DIPG parent last week, a Dad just starting out on their journey.. and I haven’t been able to shake it. .. 3 years. Its been almost 3 years since I last held my daughter. Since I last smoothed the hair from her face.. And whispered in ears.. Almost 3 years since I felt her slight weight in my arms… I wonder. So much I wonder if I helped her. If I said the right things to her.. I wonder if she felt safe.. if she was angry? Was she scared? were you scared baby? I don’t know how to not let the slow onslaught of questions overtake me.  I am trying. I am really trying to stay above.. but the waters are rising. . A slow and constant pounding … a steady and growing swell of grief is swirling around[…]

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