truest truth

Its another one of those nights that my mind is in a jumble. I feel like I miss one night of blogging and my mind starts to race a million miles..

. .. shattered and scattered.

I am weighing all our options for how to best make a impact in fight against pediatric cancer.. should I start a non-profit…should I start a branch of a already established non profit… should I concentrate on blogging and try my hand at public speaking…

All while staying upright… living a balancing act

.. . parenting grieving kids…loving a grieving man and desperatly grieving myself.

All I know for sure is my family has to be top priority. I didn’t write last night because Tony and I had a in home date night. We haven’t sat together at home and shared a meal like that since she was on hospice..

After that my need is to raise awareness to encourage change. To empower people with information and a way to join in the fight…properly armed. I have started to make small changes to the website to show the new direction.

.. no longer trying to save my daughter..

I am still taking my time…. trying to gather information.. take lots of notes…and absorb it and pray about it. .. Sometimes though I feel a pressure. That I need to work on it more or faster.

The only times I truly feel free .. the times I get my best thinking done is when I run.. and when I blog. Clarity comes to me at both times.

I have some short little legs…I have never liked running before.. never found true solice in it like I am right now. Same with exposing my inner emotions… baring my soul.. I could always opt to keep this journaling process private. It helps me to share…even shielded by a computer screen.. it helps to know I am communicating with others.. and I find some level of comfort in hopefully helping somebody else in my shoes or that is trying to love and understand another grieving mother.

 

I often find myself up after midnight writing… welcoming every new day .. .without her.  .  awake and aware its happening. Connecting with her through sharing about the loss of her. Then I go through pictures to find the ones that best suit what spilled out my fingers.. Often its in the “last 12 months” section.

As days tick past I see her getting shovered farther away .. becoming a lesser visual part of the last 12 months. The day I scroll through that section…and have nothing of her left…

.. I fear for that day. That moment. That realization.

I hope I continue to notice things that keep her fresh for me. Like this.. Nicholas is laying his clothes out. Not just what he had picked out for the day but in the way he will wear them. He has to have the pants positioned below the shirt on the ground. I had noticed it a little while ago but it didn’t penetrate until I picked out his jammies and gave him 2 shirt choices. He had to lay each one out to look at then decide.

Jennifer loved her clothes.. she changed them often…and had a strong sense about what she wanted to wear.. She picked

out her outfits the night before .. we would walk in her room after bed to find the next days outfit in the middle of her room..

every detail planned out.. socks.. shoes and headband ..

Suddenly our 2 yr old is doing the same thing…well minus the accessories. Which is a little ironic since he is most know for being in his “chonies” or just plain naked.

I baked today…Nicholas requested zuchinni muffins. I baked gluten free ones and found my mind wandering to how I should have been baking those as a after school snack.. . How she requested banana bread that last morning before we knew that the cancer had spread. ..and that she helped. She liked licking the utensils but was never super fond of the preparation like my boys are… That morning I told them that it was just a mommy and Jennifer baking time. That she got to help me alone.

 

 

I forgot I did that..I’m glad I did….

 

Food is such a strange trigger for me. I did a gluten free picnic in the back yard for all my boys and even though it makes no logical sense it felt like I was respecting her more that way.. and her place in our family.

The kids loved to eat outdoors. Lunch in good weather was always outdoors.. . even in what I considered too hot or too windy.. Jennifer would request to eat outside.

When Tony was on paternity leave for Charlottes birth last May we bought a outdoor water slide. We had so much fun on it. Jennifer loves the water… Jonathan not so much. But he followed her lead last year. The joy on her face when we blew it up the first time…. the way she encouraged Jonathan to give it a try.. a not yet 2yr old Nicholas splashing around and wearing a newborn baby Charlotte..

perfection.. my perfect little family.

We really considered waiting one more year to buy it. To give them something fun to make her first real summer vacation something super special..Without having even started kinder its hard to know what the words summer break really mean… We went for it anyways..Tony made the final call.

another thing I am so grateful we did…

Jonathan has been requesting the water slide. Tony brought it out for him today. We told him that was the plan before bed.. after bath he put his suit on to sleep in.. just to be ready. This boy. Our boy that hates the water slept in his swimsuit.

Tony thought about inviting some friends to join us.. but I am never sure how things will hit me so we kept it just us. Jonathan climbed right up and went down.. he then encouraged his little brother to do the same.. .

just the way his big sister did for him last year.

I am proud of him. I am pretty confident she is too.

I asked Tony if he thought they were missing her… wondered if having the slide out made them think of her the way it was for us. He said … I dont know but I am sure he will tell us.

 

 

One point later in the day I asked if they wanted to have friends over.. a family with 2 girls and a boy. Jonathan excitedly said yes. One one sister and the baby brother could come at first. The way Jonathan looked at this older girl.. slightly older than his big sister.. adoringly.. like it he was finding comfort the same way I do on my runs and through writing. .. I can’t do the gaze justice.. but it hurt my heart.. to see how much he is missing on a daily basis without her.

He brought her up to them.. I can’t remember how. It was happily and felt a little like he wanted to be sure she knew he wasnt “cheating” on her. (but of course that could be my adult interpuration)

Later I was outside with everybody and I heard him wailing from inside. I thought it was a bathroom issue..(parents of preschoolers know what I am talking about) I went to his bathroom… then ours.. I found him crying in his room. I thought he was hurt…

he was .. .but not how I wanted him to be.

“I miss sissy..thats why I came in here. To look at her pictures”..

I scooped him up and held him in my arms. I asked him if he knew why. He didn’t…actually he said “I still don’t know”..earlier in the day he had randomly stopped while playing on her i-pad (a luxury for him to play with it so I found it surprising he stopped to say anything) I asked if it was because our friends were there and he said no. I am confident he was beign totally honest.. Quickly he perked back up and was ready to go back outside.

He just needed me there with him… to somehow share in and absorb his pain.

I am so glad I get to do that… to be that for him.

baby Charlotte was loving it out there today.. soaking wet from being splashed..happy as can be .. . we seem to raise water loving girls. I learned today that sisters is still so very hard for me. Brothers and sisters together doesn’t seem to get to me.. girls Jennifers age I can seem to handle better than I would have expected….

its sisters that burns me. I hate that.

Near the end Jennifer told me she wanted to teach Charlotte how to swim. It nearly broke me to hear her say that.. knowing.. it wouldn’t happen.

but now.

well I am starting to see she just might. Not how I want her to. Not how she was supposed to.

but she just might. . .

Writing that.. saying it “out loud”.. I feel like it should give me peace.. be a good thing. But right now it just makes me cry.. makes my eyes sting and makes it hard to type…

Looking out the kitchen window..out into the backyard with so many of the loves of my life playing and laughing together.. for a moment I remembered who I used to be. Not perfect by any stretch.. . but I really did appreciate my blessings. Moments like that.. hearing them through open windows warmed me to the core.. .I thought I really knew how lucky I was. Years of infertility can do that to a person I guess…

Actually maybe I did know better then. I thought I was going to write I had no idea how so very lucky I was.. But I think then I was at my best. No fear for not getting to have another.. I had my 4 I felt complete..

today though I wanted to appreciate the sounds I heard.. but the loudest sound I noticed was that of her absence.. the laugh that was missing.. That mischievous and silly little sound that used to echo in my ears.. A sound I thought I would get for just a little while longer ..that would transform into a older girls voice..

I shouldn’t be like this. I should appreciate it. I could lose any one of them tomorrow. …

still I don’t..

… what if i can’t?

The pain isn’t lessoning. Its getting deeper. I am talking with parents who started foundations in honor of their dead children…

because one of mine is dead.

Jennifer would never miss a chance to do water play in the backyard…today she did..

because she is dead.

We ate gluten free today though..I just couldn’t face that fact in one more way…

I just want her here.

I really could just write that one sentence over and over again…

day after day..

and it would be the truest truth I could share.