Tag: connection with dead child

follow the signs

The tears are close right now.. Seemingly just below the surface and that really surprises me. But I feel like my strength is also. .. Because I am feeling her again. Its like she knows when I need her the most. Jennifer guides me.. when I allow her to. I am finding that when I just go with things.. that she sends me signs to say she agrees.. And somehow I know its her. It’s been something that has bonded me not just with her.. but also with Jonathan in particular since he always seemed to have that easy and strong belief that it was her way of connecting to us.. He struggles with that a lot lately. Trying to explain the logic of what happens. Wanting the sign to be so obvious that there is no room for doubt. It has bothered me lately hearing that coming out of her[…]

this last

You never know the lasts..I wrote about that before.. wondering if I would know the lasts as they came to pass.. I didn’t. Surprisingly I still don’t. I got mail for her. Jennifer Lynn Kranz.   It was ironically enough from the first eye dr we saw.. the one that said we needed to take her to a specialist. .. that lead us to a MRI that then discovered the tumor that would turn our lives upside down. .. eventually ripping us apart. Will that be the last piece of mail I get for her? The last time I see her name in my mail box?   How is that even possible.. my daughter. My should be almost 7 yr old. Sometimes it feels like she is being wiped off the face of this earth. She was stolen from us 8 months ago.. but somehow I feel like I lose[…]

6 years

Tonight I should be practicing for a speech I am giving tomorrow. I have only gone through it twice now.. But I can’t seem to do it. Im not sure why. If its something swirling inside of me.. waiting for me to write and get it out.. Or if its too hard to do. Too hard to say the words out loud.. look at pictures of her…remember. Another cancer mom wrote about it .. wrote about how she doesn’t want to forget a thing about her son.. but also can’t bear to remember. I get that. How as the numbness is slowly wearing off that its hurts even more to allow myself to reach for her. Because it is just so devastating. But actually I think thats likely not accurate for me. .. not yet at least. Now the yearn is still so much stronger than I can even fight. I[…]

..always a flower girl..

Its our 10 yr anniversary. I adore my husband. He drives me nuttier than anybody I have ever known.. but also fulfills me in a ways I didn’t know I was lacking. All day though I remember her.. what a great wife she would have been. What a beautiful bride.. I hate that I will never see my husband walk our first born down the aisle. He is taking me out of town this weekend. Just us.. none of our babies and no Unravel work either. Just us.. I am both excited and nervous. But I know how much I need this time with just he and I. . and her.. I can’t help it. I hope she is there with us. We were fluttered .. like a super duper flutter. And it is incredible. I was lucky enough to speak at a event for Dr Olsen last night in[…]

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[…]

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.[…]

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[…]

I am a blogger

A friend of mine encouraged me .. strongly.. to go to a blogging conference. Who even knew things like that existed! It really helped me to clarify my focus and my goals. I want to speak her name. Hear others speak her name and galvanize efforts to save kids from toxic treatments and parents from joining my ranks. 7 today lose their son or daughter to cancer. It was both scary and energizing to walk up to groups of people and introduce myself. I always tried to have them share their blog/story first since my seemed to be a conversation changer. Although that was hard.. I did what I always seem to do.. and I imagined what it will be like in 2 yrs. To say my daughter has been gone 2 yrs from a brain tumor no survival. .. it will hopefully still have a impact but not the[…]