Blog

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[…]

Tahoe in pictures

We had a good trip. I think in part because I did so much hard grieving before we left. The 3 days leading up to the trip were pretty miserable for me … and in turn my kids and husband. My family drives my bonkers sometimes. I get my feelings hurt.. and I am sure I hurt feelings in return.But my biggest take away from the trip… I love my family so very much and they love me.. my husband and my babies. All 4 of them.  If we can raise my 3 living to be the kids, teens and young adults my nephews/nieces are .. well then I will consider it a job very well done. I just wish that my Jennifer could have been given the opportunity to grow with this incredible mix of people. She would have learned so much.. and I believe taught us so much.[…]

…but she is

I find myself back to a place where I have a longing for my nights to come and write. I don’t know if I am in a transitional period or if it is just a hard spot for me right now. I am brimming with emotions lately.. anger and sadness.. and a sharp desperate ache for my Jennifer. I have prayed a lot lately. Constantly talking to God, just walking out to the garage to grab a  bottle of juice I speak to Him. I ask for help.. . Sometimes its unbelievable to me. .. how I can feel so mad at Him on one hand .. yet still closer to Him than I have ever been. I know heaven is real. I know this isn’t the end.. but I just get so damned scared. And so I write … I release those fears through my fingers.. and then somehow am[…]

llama llama

Memories are all I have left.. Its what us bereaved parents cling to. but when they hit unexpectedly it can be devastating. I feel like I have been hit over and over again today, and I feel so weak. I rarely leave the house to run errands anymore. Her memory seems to haunt me everywhere I go. I actually wouldn’t mind it so much if it was just me .. I have no problem crying in public.. But it just isn’t fair for my kids. ..especially on days like today when the tears were fairly constant. Turning on the car.. I hear the song we walked her down the aisle to.. The only time we will have that privilege. Even just driving in the parking lots for the grocery stores got to me today. I still haven’t been able to go into a grocery store since she died.. Today being[…]

warrior

Warrior. Warrior mom. Warrior child. It’s a badge given to cancer families in this world I am slowly becoming accustomed to. It has always felt uncomfortable.. awkward for me… I wasn’t sure why. . I just have always known Jennifer wasn’t a a warrior. She was a barely 6 yr old girl who loved to hide from her Daddy when he came home from work and then jump out to surprise him…a little girl who snored like a grown man but always denied it was her. A brown eyed beauty who truly believed in the magic of a princess.    I don’t think any of our DIPG kids are warriors really.. .I think they are more like sitting ducks. Being picked off one by one. I am angry. I wrote awhile ago how it wasn’t a fair fight for her. And I realized this feeling is just an extension of[…]

average

I had a phone call with one of the aunts of Dannys warriors. She is… they are… amazing and I think they are poised to do good things in the fight against pediatric cancer. . I heard in her a joy.. a hope.. that we lost 5 months ago. A piece of me that I miss. The part that believes in miracles. I remember it though and I will hope that they find their way to that miracle. We talked about how it was for each of our families .. 9 months 4 days ago for them and 9 months for us.. 9 months from the very last birthday that we will ever get to celebrate her turning a year older. 9 months since we learned of DIPG. . and that some childhood cancers offer no hope. 0% survival. 9 months. The average amount of time a child with DIPG gets to[…]