Category: after death

every room

I parented…I mean like really parented her up until the 10 days before she died. I am reminded everyday I walk by the sticker chart I made her right before we left for our make a wish trip. I’m glad I did that. I remember my mom saying to me (before we knew it would be my reality)  that she always thought I would be a good parent of a child with a disability or illness. Wonder if that was another sign along the way? But the chart is also such a stark reminder of how fast things went. Pretty sure I gave her the last sticker the monday we got the new prognosis. I have lots of little things all around the house that remind me of her…and remind me of what life should be like now. Today the boys goofing off in the “dance room” on and off[…]

4 months

Today I just couldn’t. I stayed in bed til nearly 4. Luckily my parents had the boys and Tony, my sister and my friend took turns with Charlotte. We did go through the stack of boxes of medical equipment finally. Today marks 2 weeks since she died… tomorrow marks 4 months since her diagnosis… …and since her 6th birthday. 4 months… un-real. But so… real. *just looked at the dates..tomorrow is the 27th so actually friday the 28th is 4 months I have no concept of days right now*  

Here

Today we went to the cemetery. To pick the place for our daughter to be buried. *spoiler alert* We didn’t. But we looked around and got a idea of our options. We each have strong feelings about a few things, so we are working on merging them together…so far..so good. In some ways being there energized me. I have a memorial stone or plaque to plan for her.. but that enthusiasm was short lived. Afterwards we drove to a restaurant to eat a late breakfast. I used to go there on Tuesdays when Jennifer went to school. I guess we really only went 6 or so times since she had barely just started kindergarten.. My friend and I started the tradition on kids eat free day..something to look forward to and not miss her too much.. .oh how I miss that innocence. That feeling that I thought I couldn’t handle[…]

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[…]

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[…]

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.[…]

no word

I can’t stop crying. And thinking. SO much inside me desperate to pour out. I try to go on facebook to numb my mind. And I see her everywhere and I am thankful. So eternally thankful. . . . and gutted. And scared for it to end. One day everybody will start to move on. You have to. It natural. I can’t. Ever. I felt something with her. A connection and a warmth together in the final moments. And its gone. Its all fucking gone. I am so lonely. Surrounded by nothing but love and prayers. I am so lonely though. It defies all logic. But then again so does the death of a 6 yr old old. My 6yr old. Muscles in my body ache from the voraciousness of my tears. I had a nightmare last night. One I am too scared to share. And one that has made[…]

forever 6

7 children died today from cancer. My child wasn’t one of them. She is already dead. I will blog about the 24 hours leading up to her death. But that will be one I keep just for me. Here though moments . . memories will come up I will share you as they do. Today has been harder than I ever could have imagined. I held her. I stayed with her for over 24 hours . . much of it spent looking in each others eyes. It was. . . well beyond words. I think people have a image of death. . .maybe to ease ourselves. . that its peaceful. In my. . albeit thankfully limited experience  . . its not always. It is raw and messy and gritty and hectic. . . it is beautiful and awe inspiring. . . The 24 hours leading up to her death. The[…]