Tag: Diffuse Intrinsic Pontine Glioma

Seattle in pictures

  Seattle was great! So many memories made.. and difference to be made. We gave over 130,000 into the hands of some incredible and dedicated researchers. Thank you! I didn’t tell Jonathan until the night before our trip that we were going somewhere and he didn’t know it was on a plane until we got to the airport. Then I told him every single step before we did it. That seemed to be the perfect rhythm for him. We were on seriously the smallest plane I have ever been on. My 5 ft tall self could easily put my bag in the overhead compartment. I am not a good flier so that didn’t help!! The last time Jonathan was on a plane was our Make A Wish trip. On the flight we talked about those memories… Bridgette was perfect! Until we got to the hotel. Then she freaked. Jonathan got[…]

the day after..

The 13th is actually the worst day for me I think. . That whole day after thing. When Jennifer died.. that first 12th.. I tried to stay up until midnight .. but I physically couldn’t do it. I knew that after that day was done would be the start of a lifetime of days of not holding her.. touching her.. knowing her.. And I think these two 12ths we have survived are much the same. Because this 13th is the first day I have to say 2 years.. its been 2 years since I lost my daughter. Then there is the whole day after thing. Like an big event in your life the day after is hard.. almost like a let down. We are so busy on the 12th. A mixture of remembering. . and running from the memories I think. We are so incredibly blessed to have had so[…]

do over

Up and down and backwards.. tumbling over and over again. That was my today. I have felt every emotion possible today. But I am ending it.. in a quiet house with  a few hitting me all at once.. all overwhelming in their own right .. Sadness. Dread. Pride. Gratitude. .. an odd mixture. thank you jennifer. i know. i know you have a part in the latter two. the ones that matter the most. somehow i just know i have you to thank. The dread and sadness .. I don’t think I need to explain those.. And tonight I don’t want to. Tonight those emotions are all mine. Moments to be shared with the daughter I can no longer touch.. but will one day follow into the light.. Most of the day I felt on the edge .. just hanging on by a very thin thread. Verging on an outburst[…]

roses in the ocean

  **I don’t often re-read what I write. But tonight I did. And this posting is a mutant writing. With makes it a perfect depiction of what its like in my head. Where nothing seems to fit together or make sense coming from one person.. And I am trying and failing not to freak out but all of my pictures are getting distorted as I upload them from my “good camera” luckily I snapped a few to text to Daddy with my phone.. So my apologies for lack of pictures. ** Jennifer loved the beach. So very much. We live so close to it. But I almost never took her. because I always had a baby or was pregnant.. or .. well really time. Its because I counted on time to do it later. I really wish I had taken her more often. Tony left on Sunday so its just been me[…]

a thousand years

Do you know I still haven’t dreamt of her. Not the real her. I’m ashamed to admit that .Its only been the anguished her that has found me in the dark of the night. The little girl that died in my arms. I have dreamt of her. The horror that she somehow survived day after day.. That pain filled girl comes to me. ..but its not her. please please please i need that not to be her. But I know.. I know somehow she is trying to get to me. Trying to get to me. To reach me. My 6 year old is trying to get to me and she can’t. And I am so scared its my fault. That I am letting her down all over again. I’m sorry jennifer. I’m so sorry I know this is the key. This is they way I will be able to finally[…]

..because life keeps happening..

It’s coming. I can feel. Even if I didn’t know it. Even if I didn’t remember it I can feel it. physical .. unrelenting.. grief.. A heaviness in my chest. A strain on my back. Ears always ringing.. just a bit. Heart beating faster and harder. Eyes stinging.. always on the verge of emptying. Another year. .. because life keeps happening. Why couldn’t I save her? Why couldn’t I relieve her pain? Stop her suffering? did i at all baby? was it ever not excruciating? This year is so different though. I knew exactly what I wanted to do. What made sense for all of us and I was able to make it happen. There was freedom in that. Freedom. Strength. Comfort in having a plan that felt right But not this year. This year its all up in the air. And nothing not a damned thing feels right. ..because[…]

flash

flash.. Today it starts I guess.. flashes. Constantly. Of her final weeks. I feel like I am suddenly on the verge. Scared I am about to topple off.. Because I know its not a matter of it.. simply of when. But I can’t do this right now. I leave tomorrow for Seattle to give the amazing Dr Olsen a check from Unravel. Jonathan is missing school and coming with me. I need to not be a shell. .. So I hope by diving in.. and sweeping out the cobwebs of my mind.. maybe I can be more .. Because today was sudden. .. flashes.. moments.. horrible and beautiful. Walking down the hallway past what was Jennifer’s room.. now holding a sleeping baby that never got to meet her biggest sister. a flash that stops me.. Solid. I try to grasp and savor it. The weight of her.. How tiny she[…]

so much has changed

Bridgette is 5 months old.. Thats how old Charlotte was when our lives began to crumble. .. Today is hard.. I just woke up hurting and wanting. And mad. I went.. as I always do in the morning, to a place Tony and I both call wonderful torture. The “on this day” option on Facebook. And I saw the picture of my Jennifer with one of her very best friends. They were wearing the matching pink minnie shirts Jennifer picked out for them in Disney World. I smiled. Remembering how the girls were so serious about trying to match everything. Same color hair things.. and boots and leggings and blue skirts. I smiled at how happy she was to be back at her preschool even though she should have been in kinder. How we gave her the choice of where to go .. and she gladly chose Ms Sandy with Maddie[…]

4 year old questions

Last night at dinner Nicholas just started asking questions. I was giving both little girls a bath at the sink while my boys all finished dinner. It started off casual and easy and Tony asked if they had more questions.. And Nicholas did. So many. So so many. He directed them all to me. .. It was Tonys first time hearing the things he asks.. Seeing his fear and tasting his 4 year olds sorrow.. .. but we’ve done the before. The way he fights the tears that burns his eyes. They way he struggles to understand. Its just like Jonathan after Jennifer died. This deep want and desire to understand the unimaginable. kids die. we don’t have the answers and i can’t protect you. But Nicholas needs things to be right and fair and in order. As he fought the stinging in his eyes that he doesn’t understand His[…]

a bears voice

The holidays have come and gone. We survived. But I don’t really have time to catch my breath. Because now the countdown begins. To the official start of our 3rd year without her. That thought makes me choke and gag. Its a horrible notion. its my vile truth. 2 years ago right now I still had some hope. That maybe.. maybe my Jennifer would be the one. The first to beat this thing. That we would have time for more memories and experiences. That we made all the right choices. Choosing to try radiation. To have Tony keep working so we could take that time later on .. to be with her while she was healthy not in treatment. I will always carry a guilt that I think I pushed for him to do that… To work while I took care of her medical needs.. then take time once we[…]