Some girls are just born with glitter in their veins


Another Wednesday..

means another week has passed. .. 8 week in total since I held her and felt her. I spoke with somebody tonight about what that time was like.. those last 36 hours with her. Lying in her room with her. I knew she was dying.. knew she would be gone forever.

I had no idea what that really meant. What that really looked like and felt like.

***she lived 10 more days**

***she lived 10 more days**

It surprises me…constantly on this journey.. How hard it is.. I knew it would be the hardest thing I ever had to do. I mean I thought I really really knew and understood.. was prepared.

“hardest” doesn’t even begin to so it justice… not even scratch the surface.

Its like a tornado of all the “hardest” I could ever imagine feeling..deafening sounds..whistling in my ears..

I feel like much of my day is spent in “the calm before the storm”. .. .just walking through the motions… knowing its coming.. feeling the pressure build as my time…my blogging time .. .gets closer. I wonder sometimes if I am doing this all wrong.. . if its unhealthy.. unfair to her to not feel the “hardest” all day long.. Its in there always.


Always. But I don’t feel like I can survive in the eye of the storm all day long.

Survive… what a unique word that is. It can be so much

.. . .and so little too.

Surviving.. what I am doing. It’s not the same as living.

But I am doing it. That’s something.

Why do I write?  I do it because it shares our story in this world of pediatric cancer.. attempting to shine a light to one families.. journey… loss.

of 5 peoples survival.. and 1 little girls …whats the opposite of survival?

.. . .destruction?IMG_0232

I write because its my release. My time to succumb and sort out the mess of thoughts swirling in the gale force winds constantly moving through me.

Mostly though I have realized I write to connect to her. To talk about her .. every night I get to share her over and over again. DSC_0108




Yesterday we had support group at night and brought all 3 of our living kids to my sisters..Aunties house. .. Its a good time for them there. They were already comfortable and bonded with all of her family (she has 5 kids) so I think there is a safety for them there.. and fun. Wresting and guy stuff…. for all of my guys. My nephews have stepped up for Tony too.

I used to think we just might have a shot of raising kids as good as all our nephews and nieces.. now I’m not so sure. The whole child rearing landscape has changed. I feel like there are so many land mines we have to try to dodge now..

My sister and I talked yesterday for quite a long time… all about the very beginning of it all. The visit to the first eye doctor.. and the 2nd one…the MRI when we found out she had a tumor.. DIPG. calls..Just talked and shared stories.. same ones we have told a few times IMG_2362already. I need that so desperately though. I need to talk about her and that time.

Its more than a desire… its a need. To relive it. Connect with it.. with her. Force the realization that all of that was real. That I lived it.. that they are my memories…some foggy and disjointed.. some crystal clear. .. so much feels like a tv show I watched versus my life. .. my daughter.


I realized how scared I am that at some point people won’t want to talk about it anymore. Won’t want to share those same stories over and over again.. The good and the bad.

Easter is coming. I want to talk about her that day. Share my stories and hear other peoples stories. She was only 6 though.. she hadn’t lived many Easters.. I didn’t know how short our time together was… I didn’t commit much to memory..

thought I had time to do that..

So much of her precious life I was in the fog of pregnancy and newborn.. blessed wonderful times… but foggy and tired times too..



I thought I had a lifetime left to absorb more. So the stories I have feel so limited. But its what I have. Its my connection to her. I hope so much my family will listen to the same stories over and over and over again…. every holiday and bbq..the things she did…

and every graduation and wedding too… the things she never got to do.

I am so scared though. So so scared that nobody will. That it will be too sad or too hard to remember the dead 6 yr old. That hearing the same stories over and over again will get too boring.

… those stories are all I have. A limited reserve. .. I wish I could remember more… I’m sorry sissy. I’ll never forget you…but I so wish I remembered more good stories.

I can’t explain how palpable that fear is for me.. that those closest… that will hear the stories most often will grow tired…won’t understand my need to keep telling them.. to hear them speak her name. Hell I don’t even think I understand it.  I feel ok writing this because I think most of my family doesn’t read this anymore..

Ironically enough this all started for my closest circle.. for those that knew us to stay connected and know what’s going on with her.. it grew.. thankfully so. . .but without her I think its understandably lost its meaning for them. .. while simultaneously the meaning has grown for me..

Its my way to breath her in again every night.

So let me say this. For anybody that thinks about sending us a note on monthly anniversaries of her passing.. or on her birthday or year anniversaries..Don’t unless you are in it for the long haul… committed to remembering us. her. year after year. The pain I have already experienced on a small scale of being forgotten is bad.. I can only imagine it gets worse. . .

Well now this all went a different way than I had planned. Today was a work day.. meeting to talk about the 5k on May 18th  and the event I am speaking at on May 9th. How I am working towards finding my place…where I best serve in the fight against pediatric cancer..

.. guess tonight is not the night for that.

Today was a busy day… a full of talking and doing day.

Those seem to pave the way for the” hardest “of nights.