Month: February 2014

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*  


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 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[…]


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[…]


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[…]


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.