I spend a lot of time, a few hours a week going to counseling or taking Jonathan to a session.. But if it helps its all worth it. I think for us we are doing this the best way we can.. and we happen to need the help to do it.

My goal is that Jennifer’s death won’t be what defines us but was the catalyst to recreate us.. all of us. Something we didn’t need.. or want.. But something that did in fact happen to us. I have blue eyes.. I am 5ft tall. . and my daughter died. I want it to always be part of me.. part of us.. But not all of me, like it feels right now.

It’s scary for me to realize that truly we are still just in the very beginning stages of that recreation.

Last night Tony and I were talking about how much everything has changed for us.  How different it all is not just from when we had a healthy 5 yr old daughter.. but from when we had a terminally ill 6 year old daughter. How different the landscape of our relationships are from that point to now.

7 days before we learned about the time bomb growing in her head. So full of hope for our future.

Tony said ” There is no glory in this shit. This is where it is ugly”.

I’m selfish. I hate that he hurts in the same way I do but I appreciate so much not being alone in my outlook on this. That it is in fact harder for him right now too.. certainly harder than it was when she sick.. and so much harder than right after she died.

And how painful it is to look around and realize you lost so much more than just your child.

I say “ A sick child is easier than a dying one and a dying child is easier than a dead one.”

Her last doctors appointment. 3 months after the last healthy picture was taken. ..we still hoped..

Not just for us though.. for the people surrounding us too. I can’t say I understand why. I try to.. I want to. But I can’t. Because I haven’t been the bystander to such a wreckage of a little girl and her family.

I don’t know if I believe in hope anymore.

But it also makes us both so incredibly and deeply grateful for those that are here.. Standing by us.. with us in this time. .. The truly difficult time.

I still can’t help but wonder if it will ever get any easier.. any better. Because I look at more recently bereaved parents with a jealousy.

… how twisted my mind has become..

How hard it must be for others not in my shoes to understand.. Actually many in my shoes may not understand.. But I share.. just in case I am not alone..Just in case it helps for somebody else to know they are not alone.. Or to give permission that I understand those that look at me and are jealous that at least I knew it was coming. That I had the chance to say goodbye.

Once jealous of parents of bald children because at least they had a chance to fight.. now jealous of parents who recently buried their babies because I know they are still numb. I know how much worse its going to get.

Are other parents.. further out then me looking at me the same way??

…i don’t know how to be ok with this.

i don’t have to go on without you

for all the years

that I know i have to.

..until there is a cure..