Tag: DIPG

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.[…]

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[…]

I am

I am out of control. Watching Jennifer struggle. Witnessing her slow and painful death.. I learned I have no control… And now.. I constantly feel like I am being battered by wave after wave of emotions. I wish I could control my mind better… I wish I could control the triggers.. know when they are coming. ..But mostly I wish I could contain them better like I used to.. It seems like its getting worse now in that aspect. That when I used to carve out time daily to write I could control the anguish better and keep it locked up until I was ready to take it out and examine it behind this keyboard.. But it seems along with the growth I have talked about recently is this new thing. .. my loss of control over the triggers.. And the way I am reacting to them. I have found[…]

this christmas

We made it through the holidays.. It wasn’t pretty a lot of the time.. But really thats not my goal anymore. Its just to make it through. To celebrate the joys.. and be ok with the sads. To say good riddance to the passing of a year without her and try to not dread the start of year another year without her.. Christmas was just a crap day. One where everything seemed to just go wrong. … From toys breaking.. to meals not cooking right.. Tony even had to go into work. The culmination of the day was the kicker..  I turned the corner from our kitchen to the hallway to be greeted by water. Charlotte had stuffed too much toilet paper and for 20 mins it kept flushing.. But maybe that was a good thing.. Because we all banded together to clean it up.. and keep little hands from[…]

lessons from above

It’s always amazing to me.. how things seem to happen. I desperately want to meet her again in my dreams.. so much so that I think I miss the ways I can see her in my day to day.. Especially right now. I just miss her so much that everything hurts. And to exist.. especially around other people takes a lot of work. So I avoid it. But I worry it will push everyone away. .. So then I move through it and go to social occasions… I find my humor becomes very dry.. And I worry .. will I push everyone away? So really the fear is that my struggles will leave my whole family alone. And its overwhelming. I am overwhelmed. Today was a wake up and cry in the shower kinda day.. Covering my mouth trying to stifle the sobs that are racking my body.. hoping the[…]

forget

I look at her picture. And I want to grab her out of it. To feel her warmth again..I just want to grab her by the shoulders.. and shoulders. .. her shoulders .. remember oh God.. please don’t let me forget.. her shoulders .. my hands could perfectly cup them. If I moved my thumbs inward I could feel that bony bump right there.. They curved in slightly.. I think . ..I think she hunched just a tiny bit. Oh my God. Is that her? Or is it Jonathan? please .. oh please. jennifer. no. no. no. its like i am losing you again. Piece by piece she was stolen. And now it happens again. As I struggle against my own brain to remember her. Its like a grainy cell phone picture.. We have tally marks on the wall for the kids heights. I walk past and will touch where[…]