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i just want my daughter

I just want my daughter. I miss her so much. With such a terrible forcefulness. So many feelings.. she should have been here.. And why her? Why my baby? I just want to hold her. To feel her. To see her smile. I am trying so hard. So hard just to function .. I cannot believe how exhausting just living can be somedays. Today is that kind of a day. I woke up ok. We took the kids to breakfast since they filled their sticker charts. And my ache started to break open then. I don’t know if it was the nagging feeling I had that I gave into when we left to give a table full of people our business cards. Feeling like I was ruining their nice morning with the reality of our lives.. or even worse. If they didn’t even care. If it was too much and[…]

my grief

This is my grief. This is what child loss looks like in my house. Running around the house. Not exactly sure what I am looking for .. but feeling very frantic. Fingers pinched together. Room to room drawer to drawer.. then I figure it out. Scotch tape. I take the one strand of hair I have in my fingers and tape it to a piece of paper and fold it in half. I breathe. I don’t think I had done that the whole time running around the house. I touch the hair now. Just one strand. And I cry. My boys come into her room and I show them where I am putting it.                 We go back out to the dance room. They keep putting on her old costumes. I fight the tears.. and a strong urge to throw up and run[…]

i’m sorry

Is there a trade off? Two positive blog posts..here and here frankly some of the best I think I have ever written.. Does that mean the dark becomes so much stronger when it comes again? I haven’t been able to shake the overwhelming pain from last night. I am so sad. I feel so broken. I miss her so much. One of my best friends daughters starts kinder tomorrow. I know it will be a hard day. I should be at her house now helping her to prepare. I should be there sitting on her front porch when she gets home. I just can’t. I am too hollow to absorb anybody else’s pain. Sometimes I really really hate the new me. I am struggling right now. . just missing my daughter so simply and so completely. Scared of the future and how I am going to survive this year after[…]

forever kindergartner

Oh how a year has changed things.. and oh how it hasn’t. Still sitting here the night before school starts in tears. Last year I had her lunch bag packed and my alarm set. Her uniform in the bathroom all ready to be worn. I had spent the last few nights sneaking into her room to lay in her bed with her.. and sneak back out as I, a then non crier would start to cry… Things had been so perfect. Everything for my perfect little family was going to change.. she would be gone for 6 hours a day… I was going to miss her so much.   Oh how I yearn for that pain again. To still have her 18 hours everyday.. Honestly what I wouldn’t give for just a hour with her everyday. I hope I remember to stay off of Facebook tomorrow.. really this whole week.[…]

cancer free

You ever go back to something you loved as a child and it looks so different? A field isn’t so wide.. a staircase isn’t so high.. a playground isn’t so big?? I had that happen today. But I hadn’t been to this play ground as a child. .. I went there when my children were so much younger. I went there a lot when Jennifer was 2 and Jonathan under a year. I was shocked at how much smaller all the equipment looked to me.. especially as her little brother scaled it in 3 seconds. I didn’t know that could happen as an adult. That my adult memory could be so changed in just a few years.. I guess time really can change things.. I wonder if thats how I will look back on her.. If she will seem smaller ..  somehow different to me in my memory than she does[…]

its ok mom

No dreams of her last night. But Jonathan woke up scared of the dark so I got to sleep with him for awhile. I knew exactly what I wanted to do this morning with the kids. So when we woke up I told them it was the 12th and we had another surprise destination. I was so sure they would love it.. Before we went we opened our fluttering kit. . I loved seeing their reactions. So many pieces of the kit mean something to us. I hope they will look back and be proud of what we did… and how we did it. .. Jonathan asked to do balloons so we grabbed some on the way. Nicholas figured it out first. Yelled the name as we pulled in.. Gilroy Gardens.. His big brother was quiet.. I should have known then…we sat in our car and wrote on the balloons..[…]

half a year

6 months. Half a year. So long since I have touched her.. yet still so long until I feel her again. “They” say that most kids don’t come through for their parents for a minimum of 6 months… I have been waiting for and dreading this day. Because now I am truly waiting for my dream with her.. yet still terrified of the nightmare.. Somehow 6 months feel so much longer than 5 months. This 11th was quite different from the last ones I have experienced. Tonight I went to go assemble the fluttering kits. They are beautiful.. I am proud of what we have accomplished. But mostly I am moved. I hope fluttering becomes bigger and so much more than Jennifer. But the truth is.. this year its all about her, and tonight I let myself enjoy that. The vast majority of people ordering kits did so because of[…]

everything and nothing

I miss her today with all of me. I went for a run. It usually clears my head.. gives me space… But not today.  I am hurting. I remember so clearly 6 months ago. Calling my sister to tell her to come.. then not come.. then come. I wasn’t sure that we needed her… wasn’t really sure how close Jennifer was to her death. But I was afraid… so she came to us. Today I am angry. .. . at everything and at nothing. I remember thinking I could never hurt worse then I did right then. I remember thinking the same thing those first days after she died. Thinking I couldn’t ever hurt as much as I did then. I was wrong. So incredibly wrong. I thought the same today. I thought I could never hurt worse than I am now. And as soon as I thought it, I[…]

so much

I came home yesterday to a clean house.. boys happily playing at their coco and papas and a meal on the table. Oh how I love this man. But the thing I noticed first was baby Charlotte in her frozen sisters dress turned shirt. I had them made.. one for each of my daughters. As I walked back to my room after putting baby Charlotte to bed I noticed a gift in Jennifers room. A gift bag full of things with tissue paper at the top. I asked Tony about it and he told me Jonathan has decided on the way home from the vacation that he wanted to give sissy and daddy gifts.. so he did.. oh how I love this boy. so much like his daddy. I often wonder about his little mind.. what is going on inside of it. My final day of the Tahoe trip I[…]

nano course

I was invited to this thing called a nano course here at Stanford. Its a small invite only week long conference. The basic idea is to train some parents/foundation people to be liaisons for the medical community. What that means is much of what I was taught went over my head!! Some easy take aways I can share now ..  A lot of the stuff we learned wasn’t specific to childhood cancer.. but translated to all cancers. Like a 3D gel that can mimic tissue better than other mediums. .. a big step up from a petri dish, but more accessible than a animal model. The head of that lab was so jazzed and into it. It was pretty remarkable to see. That leads me to my next easy take away. There are so many cogs in this machine. We heard from multiple different heads of labs. That are all[…]