Tag: DIPG

No into a yes

Another day…another layer of grief. Everything  seems to bring the tears now. I have no energy. No drive. The little bit of life I feel goes directly to the kids. Truthfully mostly Jonathan.  I am so thankful Tony is still home. I don’t think I could manage without him. I said I was preparing for  how hard the re-building would be…I had NO IDEA ..I feel like this new life just doesn’t fit right. Like the the tag is still attached to my new shirt and I can’t seem to find it to rip it off. Something is always off…I am always on the verge of losing it. I feel completely gutted… So much of my attention goes to Jonathan. I keep telling him I am sad or angry too…and that he doesn’t have to take care of mommy. He is my little man after all so he wants to[…]

rewind

Oh I miss her. Oh how do I miss her. All moments of her…  I miss her. And I feel like I have so much to write but I dont know if I have enough clarity in me to get it out. Today was the first “normal” day. And it was beyond hard. I snuggled with Jonathan on the couch..and thought ok maybe I can do this living thing.  Somehow I ended up looking at one of the poster boards from her service. One with lots of photos of her. And the ache started to crack open. Jonathan came in the room with me and we talked about the pictures. And the memories we had. And the ache started to rip further… I told Tony I needed to go shower…code for being alone. …and the ache exploded. ……………..and exploded. I did my best to stifle it to not upset my[…]

best friend

Wow. This just sucks. I wrote to her dr just now…saying it gets harder and harder every day…I am waiting for the day it gets even just a tiny bit easier…or even just stays the same. Its so hard on a marriage too. My husband and I are truly best friends. So we are rawest and most exposed with each other, that can be dangerous… We just naturally hold it together more around other people. But for him the anger …me the fear and both of us..the anguish explodes on each other. Frayed nerves taking hold… The boys were gone for the fist part of the day…and sweet baby Charlotte learned some very juicy new words that Tony and I exchanged while we grappled with our pain as individuals and a couple. But because we are best friends…we got it out…on each other…then with each other.  We just constantly re-write[…]

week

A week. Well almost. I keep looking at the clock over the last 24 hrs remembering…and so selfishly longing for that time again. She was in pain and hurting…I hated that. But she was here…I could hold her and kiss her and feel her. I loved that. Am I forgetting it already? Last night as I tried to write her “eulogy” I remembered the seizures. We knew they would likely happen…but there was no way to be prepared for that. When she had the huge one…the one that let us know she really turned the corner. That feeling. That fear…that horror. Its what my dream… nightmares. …are made of I cant even remember last nights….thankfully. But I remember the feeling when I woke up. Telling Tony I was having bad dreams.  And the darkness creeping in my sleeping head. I’m also scared of the dark. I have always been a[…]

dark side

Here is the dark side of what I am feeling and experiencing. So bitterly jealous. 3.5 months. That’s all we got. So many other families get so much more time to know…to pack in life…to get things in order. I know we are making a difference. But how great that difference that would be if I had time to be better prepared? I was just starting to line up things for the foundation… This was supposed to be the honeymoon period. She isn’t supposed to be gone yet. And I know.. I know so many families get less time. So many children lose their lives suddenly with no warning. So I get that I am lucky in that sense Thats why I called this the dark bitter side. I am not proud of it. But I thought it was the trade off…The trade off for watching her slowly starve and[…]

half

I took half of a anxiety pill today. Same kind we gave our 6yr old daughter. She hated them. I hated the feeling even from a half of one. I’m so sorry baby girl. So sorry you even had a need for that kind of medication. Trying to write a …well I’m not calling it a eulogy…but that kinda thing for her is brutal. I just cant find the words to express what I want to say… i lie I dont even know what I want to say. I love you and I miss you over and over again probably isn’t quite right…but its all I think.

protect

Let me start of with a very wide spread thank you. The response to my project violet post…it gave me such a boost tonight. So I need to say thank you.For the meals and snacks. For the messages of love and support. For the family coming to help with the kids or just sit. To my mom for writing her “damn obituary ” For the friend who has pretty much become a permanent fixture in our home. To the friend helping us plan and the one creating the video. To all the people holding fundraisers and donating to our family…allowing us to plan for her and take care of our boys in this pressure cooker without financial worry.  To those sharing and reading our story. It helps….And really too much thanks to possibly contain in one posting. . We are ONLY able to get through each day with all of[…]

real

It doesn’t seem real at all.  It feels like she is just sleeping. . .or hanging out at my parents house. I was so constantly busy taking care of her since Oct28th I keep feeling like I am forgetting to do something. I’m not. She doesn’t need me anymore. . .quite the opposite. I so desperately need her. but I am so busy with planning that I don’t have time to miss her. Its a cruel twist I think. Because in 1.5 weeks. When all of the hoopla has faded. The realization and truth is going to hit me again. And I fear it might be even worse. We won’t be getting daily visits from family to just sit and be. To help wrangle the boys with us. We will just be supposed to try to start living again. This is seriously so backwards. NOW is the time we should[…]

time

Sitting here 2 days after she is gone. Too much to do. I know I can get help. .. But I need to plan her services. I need to pick the songs. I need to speak. And by need I mean want.. . . . .but then when can I grieve for her? I find myself up so late at night.I finally succumb when I am alone again. . .this hurt pouring out of me. I am thankful for this place to write and release. I am already back to smiling and laughing. Pushing my feelings back into a compartment. . somewhere inside. But the moment I am alone I dissolve . . the emotions of it all. Why am I like this? Why can I be so expressive and open here behind a screen. . but so walled up with people around.  I feel like I am cheating myself.[…]

services

Services. ..celebration of life.  . whatever we end up calling it will be Friday the 21st. at Valley Christian High school in San Jose at 10:30 a.m. Reception will follow at the same location. Children are welcomed. Clothing. This one really matters to me. Wear whatever you want. Wear what you feel best in. Or most comfortable in. Jammies or a ball gown are both totally acceptable. And please please please allow your children to do the same. 100 Skyway Dr #110, San Jose, CA 95111 If you are looking for a address to send us things our friends have offered their home as a landing spot. The address is 7317 Miller Ave. Gilroy Ca 95020