Tag: DIPG

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[…]

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[…]

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.[…]

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