Some girls are just born with glitter in their veins


I am like two people right now.. I feel so totally split in half.

..maybe even more…

Right now I feel so disconnected from my heart and my feelings.. so in business mode working on things for Unravel Pediatric Cancer.. Even that is kinda ironic.. “business mode” for a stay at home mom should be making sandwiches and setting up play dates. .not looking for accountants..

Today was all about the non profit. My parents had the boys for us so we could really concentrate on it. It was a zero emotion day.

I am excited and I am nervous for what the future holds. I want to do good.. I want to be good.. in the fight against pediatric cancer.. but I cannot lose sight of my two most important jobs right now.. wife and mother. To my living children and dead child.. I need to still be actively grieving and I struggle to find the balance..


but sometimes it finds me.

Its 11:02 right now. Charlotte rarely ever wakes up at this time. She did tonight. She was angry.. just needed to be angry for a few minutes in my arms. Those moments with her reconnect me to the here and now .. . my “what really matters.”

..and I realized how wrong I was about the zero emotion thing.. It was there. So many little moments. But I stayed hardened to them.

I just get so tired.. and once the pain comes I seem to have no control. I haven’t allowed myself to really even look at her picture all day. I think people would guess I want to do the non profit for her.. to connect me to her.. the hard part is it actually disconnects me.. keeps me so busy and so focused I can’t take the time to “be” with her. Sometimes thats a good thing. I think I needed a break from the non stop tears.. I know my kids did.

I think the final straw was yesterday when I was just sitting out front with the kids like we do most afternoons.. the boys get the mail for me and then play on the grass while I read it. I opened one envelope having no idea what was inside.. It was from her preschool teacher (and I am so very grateful for it).. a picture of my Jennifer from summer camp last year.. her placemat she colored from when she went back post-radiation  **just read the blog about her school I linked, hind sight in 20/20 and that is hard **and her name. Her perfectly written little name. It was from January. How is that even possible?.. Her writing so dramatically improved.. but she still was dead just a few weeks later.

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I look back and try to figure it all out.. try to see the signs of the cancer spreading.. and in some areas I can. But things like that. Her name written better than it had been in months.. It should have meant we had more time.

So I cried. Hard. Strong. Shoulder shaking cries. Jonathan begged for me to watch him do cartwheels. . he said he might not be good but he would try. Then he laughed at how not good he was. I think it was then that I decided it was enough. Tony and I went to support group and our dinner afterwards. We came up with a fairly sizable to do list for Unravel. . and we got it all done today..

the emotion was there I was just able to outrun it.

I spent a lot of time with one of the founders (parents) of McKenna Claire foundation. Looking for advice and guidance. .. looking to continue the relationship. All of which I got. The emotion in that phone call was how many other times I feel like there isn’t cohesiveness in the pediatric non profit world.. how many haven’t been open to talking and connecting.. Supporting. And how hard it is for me because all I want to do is help… to make my voice and story heard. That was the negative.. that was my hurried fast business mode..


***looking through pictures to find the ones I wanted for tonight so many stood out she was waving to me behind the camera..thanks baby girl I needed that***

Now slowing down.. I move on from the ones that haven’t been as open to the ones that have.. Arms Wide Open, Team G, B+, KidsVsCancer. And I am honored to be part of their community.

Pissed about it too..

The price of admission for me was far too high a price to pay.. but nobody asked me.

Then came swim class. . a little scheduling snafu meant it wasn’t just Jonathan and our friends daughter in the pool like was planned. We had scheduled for Jonathan to take lessons with a little girl Jennifer’s age that he has been bonding with. So he had a lot of sitting time. He was so good. But I missed it. I was so disconnected I missed it.


At bed tonight we snuggled. He told me he missed Jennifer a lot today. He said he missed her in the pool with his friend. Last year around this time he was taking lessons with his big sister.



..this year he wore a necklace reminding him how to find her.


My friend texted that her daughter said Jonathan was sad or nervous so she moved to be next to him.. that he misses Jennifer a she tries to make him not so sad but she knows he is so sad because he loves Jennifer so much.

lessons learned from a kindergartner.

How do I do this? How do I allow my pain in enough to not miss theirs.. but not so much it overtakes me? How do I start a non profit without it becoming my primary focus?

Can I do this?


because now.. now the pain is finding me.. a 24 hr respite ending. .. and I don’t like the way I feel. Full of guilt from running away from it all day..and not being in tune with my son.

Its those little regrets.. the lighter ones that keep me up at night. Not snuggling more in bed with her.. not going out to eat at the only restaurant around to have true gluten free food for her..simply because she loved it.. . Pushing her on the swing even when she knew how to pump her legs. . serving dinner family style… The easy things to do ..

and now its the same. It’s those little things from today that I regret.

Tomorrow is Tonys last day of modified time off of work. He goes in Friday and starting Monday he is back full time. So my to do list is family time. Making sure they are my number one priority…

all 5 of them.