Some girls are just born with glitter in their veins

my daughter

I am reaching for her. Always so desperate to try to connect to her. Its been a slow build over the past few days to the point of all consuming…


My boys really wanted a party for Charlotte. So we threw something together last minute for her on Friday, a few days after her birthday. We still had our gluten free cupcakes for her actual birthday so we went outside to sing and eat them…

**I just noticed she is holding a Love4Jlk bracelet**

**I just noticed she is holding a Love4Jlk bracelet**

since they crumble more than glutenful cupcakes.. We lit her candle, it blew out and as we sang it blew out again.. then it hit me. Out loud I said good job Jennifer.. and it stayed lit. ..

13361356445_af0e88f205_bwas it really her?

I choke on that hope..

That she was there. Present enough to be experiencing it with us. close enough to blow out her baby sisters candles..

right now I look out onto the darkened patio and I hope, I wonder.. I’m not sure even why I am so scared to believe it. ..

..til now. Til I write it then I get it. This is why I blog.. this revealing of myself to myself.

Im scared to believe it because if its true.. then its also true that she is dead. I know her body is burnt to ash.. I know I haven’t heard her say my name in over 3 months.. but somehow its not real to me..

my whole body is on fire right now.. crying and sweating, Its like I cannot physically handle it..

Last night we had our child loss group. Afterwards we went out and the young girl with cancer was there. In a fairly empty restaurant they sat at the table right next to us. Again I wanted to say something. . but this time I knew what it was. I felt like I wanted to reach out to this girl. . to offer her an outlet to make her voice heard on my albeit small platform. To write here.. or speak with me somewhere.. .Not to her directly though.. approach only her Dad. .. wait for him to get more food (gotta love a buffet)

So I fretted about it.. over and over with Tony. He is struggling.. it is so hard to see your husband hurt the way he is right now. .. so he said he couldn’t stay for it. . I didn’t do it. I left with him. In the car I kept mulling it over. we drove away.. but the desire kept gnawing at me.. I kept talking about it. Finally telling him to turn around. I wished I had a business card to give them.. So I opened my glovebox to find something to write on. I pulled out a envelope and looked inside. A gift certificate to the Lucile Packard gift shop.. and when I showed Tony we both looked inside and could see the Dad standing up to go get food..

..even my Tony was on board then.. I walked in and spoke to him. So nervous. He was very receptive. Sorry for my loss (which I avoided saying as long as possible) and seemingly accepting of me.. as another cancer parent. Walking out and getting back into the car, I realized, I felt so much better.

I hadn’t really been cognizant of it at the time.. but since the moment I saw the family come in last night a different kind of anxiety had been building.. and leaving the restaurant.. it didn’t dissipate it intensified.. until we drove back and I made contact. Somehow I don’t think the anxiety was internal.. it was an external force.. I told Tony.. maybe he sensed it on me too.. because we drove together in silence.. a sorrow/broken/pleading quiet.. where so much was communicated in holding each others hands.13338277925_06a7f738b8_b

And then I am constantly second guess if its happening.. or if I am just looking for it. I wish I could know for sure. Erase all my doubts. Another family recently lost a their beautiful son to DIPG. The moms belief in heaven seems unshakable.

I believe. I do. But I am also so terrified that I might be wrong. That’s why its called faith.. yup I know that.. I am more scared now than I have ever been in my entire life.. I tell myself even if I am wrong…if my faith is misguided. .. its ok if it gives me some sense of peace today. When I find out for sure it won’t matter anymore.

then I have a moment. Like literally right now as I am writing. Our mantel still full of cards for us about the loss of our Jennifer. And I see her little face and white headband peeking out.. the picture from the front of the program from her services that I stuck up there.. and I remember. ..

**I just found this was in a lost album..I am wearing a dragonfly shirt**

**I just found this was in a lost album..I am wearing a dragonfly shirt**



A friend stopped over today with a gift for Jonathan. . I talked with her. Actually I cried with her.. over my inability to really remember my daughter. That my memory is still so two dimensional. That my recollections of her are only through pictures. I cannot remember what it felt like to really hold her. .. what her hair felt like to brush.. what her kisses felt like. .. How scared I am it will never ever return to me. That when I try to go there.. to remember her all that remains. . .. is the end.






**10 days before she died**

I go back to her dying.. not the days of her slow suffering death.

But the final hours with her. Locked inside a mostly healthy brain being overtaken by a horrific tumor. She said maybe that’s what I need to feel her.. to go back to that place. Work through, with, past that day … over and over again

…until I can somewhat accept the unacceptable.

And so now.. giving voice to my fears about heaven just maybe not being real.. how terrified I am that I wouldn’t ever see her again. . I look up see her face just barely peeking out.. and remember. My friends words about going back to that time and my other answer about why there has to be something more than this life..

her death.

Those hours in that room. laying with my baby girl her eyes so full.. .

of life

and fear

and love..

being choked out by pain and death..

.. .but not alone. I felt the other side. Something so real and so very very big.

My baby girl is part of that now.

Jennifer Lynn. daughter.

I wish I could understand.. make sense out of the senseless ..

Jennifer Lynn … my daughter.

Jennifer Lynn …my daughter.

Jennifer Lynn …my daughter.

Jennifer Lynn …my daughter.

Jennifer Lynn… my daughter.

Jennifer Lynn…my daughter.