simple acts

I just want to write something about my post from last night I have gotten quite a few comments about it. .. All opinions expressed here are my own.. They may not fit for every bereaved parent.. but I share so that people reading can know what its like.. 2.5 months out in one mama’s head..

I know..I truly appreciate how much people want to help and comfort me… .I know that what is said is only coming from a place of goodness and wanting to help.. I write to sort it out in my own head.. and because it might help others to read my thoughts, to sort their own.. and especially because I know how scary it can be to speak with somebody in my shoes.. hopefully sharing what does and does not work for me will help ease some of those fears.. provide a little bit of a blueprint for what helps Libby and what doesn’t..

A comment on the blog put it really well..how my relationship with God has changed.. .

” Prayer doesn’t change things, it changes me”

yup..

Today was a mini trial run for Tony’s return to work.. He went golfing and out to dinner with some of his buddies. My mom came for a bit to help distract the kids so I could have a phone call with the head of the Stanford research lab. I just had a few questions and she carved out some time to speak with me.. she didn’t have to.. she is just that caring and appreciative for Jennifer’s donation and for our desire to make a difference.

I had a lot to try to get done.. but Nicholas asked for me to sit with them and watch a show… my no into yes for the day. Nicholas seems to sense my emotions and does his best to stop them before they start…yesterday it was during his sink bath…turning the faucet into a phone…hellooo mommy. Today..it was watching some Tom and Jerry with my boys. Then we went outside and played bubbles and watered the trees. We took down the hummingbird feeder and filled it up..

Jennifer loved watching them feed. I think she really loved spring time. We would start going outside every afternoon (our mornings were usually filled with errands and friends). I see the blooms starting on the trees and I remember being outside ..always sharing a blanket…sharing a giant bowl of pirates bootie…sharing a selfie. It feels like a lifetime ago..

.. . well isn’t that ironic..

Night time I sink. Hard like a rock. It feels like the dark of the night swallows me up…enveloping me..

… its a swift and sometimes frightening drop .. I wonder..

have a hit the bottom?

No idea.. since morning comes.. the culmination of my nightmares… To wake up to a new day blank.. those first moments that I wake… breathing in a new day taunt me.. as reality plows into me..

Jennifer is gone.

I get up though.. and do the day. I talk about her. I walk past her room. But it almost feels like I am floating above the truth..

We played with Jennifer’s bubbles again today. We watched some float and dance on the wind…we sent some up to her. Jonathan thought she was getting too many .. so we asked her to send some back. .

Simple acts.

Lead to simple conversations about her.. with her.

They bring me back. I cry. Just for a moment. Missing her. Wanting her.

…watching my sons sorting through there need for their big sister in the midst of confusion about where she has gone.

Yet also being kids having fun chasing bubbles.

Simple acts.

I am trying to connect a little more during the day. Maybe the nights won’t be so hard. I have difficulty with it most times. My boys though.. Tony, Jonathan and Nicholas.. they bring a safety that allows me those moments.

I just don’t understand how I can talk about her.. about her illness… about her life and not break down. But I don’t. I hardly even feel it. The other day I got a book from a woman who lost her child and reading the note my first thought was literally

“oh how sad..I don’t think I could…”

then I remembered..

I am.

How is that possible? How does my mind protect me so valiantly.. so much so that I can forget for 8 words .. like completely. Totally forget.

I went to crossfit tonight. During warm up they played a version of the song we played as we walked her down the aisle. I’m a bit of a traditionalist.. I never wanted to walk her down the aisle.. That should have been reserved for just her daddy. He got a chance at Fairy’s wedding..

Watching him that day I already knew.. I knew that would be his only time to do it without me. I decided that day we would carry her down the aisle that final day together.. though I thought we had a lot more time.. .

a lot. Wow.

I meant that. I really meant “a lot” .. how is my world so turned upside down that 6 months would have been a lot of time with my 6yr old??

I hoped for the miracle to happen.. I was preparing to find the right clinical trial .. I was trying so hard to convince myself that any of it was real..

.. . I think I still am.

Finally now just coming to terms with saying my daughter has cancer. I think that fact. A fact.. shoot. .. has penetrated. Become real.

Devastating.

Though the day we were told still feels like a movie.. I know what happens…but not because I lived it.. It’s like I remember watching it. I remember most of that day through pictures.. Only a few moments I remember from inside my own body. “there is no cure” and hiding on the side of the house at her birthday party .. to heave out my tears. I hide them that day.. Thought I had to protect my kids.. .

life is so different now. As we cry together and blow her bubbles.

There is still a balloon from that day… her 6th birthday… Oct 28th. .. floating at the top of my brothers ceiling. What a sad day for my nephews when that balloon falls.

We leave tomorrow for bereavement camp. Its for our whole family. A place to meet other families that have lost children to cancer. I’m trying not to have too many expectations.. since that never seems to go well for me.. .I am hoping to learn some.. and share some.. Mostly hoping its good for my biggest men. Tony to meet some husbands and Jonathan to meet more bereaved kids. ..

What a awful club for him to be in. For all of my kids to be in. I want to do right by them. Help them grieve.. through out their lives since I know they will.. but i don’t want this to be their identity either. Just a piece of them..

blue eyes. blonde hair. dead sister. ..

I am doing my best. It feels like almost everything in me wants to throw all that out the window though.. .It is so hard to parent properly when I know what I know now.. They could be taken tomorrow. I am so scared of that. Of losing Tony or another one of our children. Even typing that terrifies me. . . like somehow I can bring my deepest fears to life..

again.

I worked really hard at that with Jennifer and her celiac disease. I worried a lot behind the scenes but did my best to not let it identify her. Its was a constant balancing act. . advocating for her needs and feelings without making excuses for her.. I guess its the same for me now with the 3 remaining.