Some girls are just born with glitter in their veins

every room

I parented…I mean like really parented her up until the 10 days before she died. I am reminded everyday I walk by the sticker chart I made her right before we left for our make a wish trip.

I’m glad I did that. I remember my mom saying to me (before we knew it would be my reality) ┬áthat she always thought I would be a good parent of a child with a disability or illness.

Wonder if that was another sign along the way?

IMG_3920But the chart is also such a stark reminder of how fast things went. Pretty sure I gave her the last sticker the monday we got the new prognosis.

I have lots of little things all around the house that remind me of her…and remind me of what life should be like now. Today the boys goofing off in the “dance room” on and off of the snuggle couch. I looked at it. So happy we got it right away and didn’t wait since it was so useful in those last days with her. But also looking at it so sad we missed out on all the time we were “supposed” to have on it.

We had planned to watch movies as a family there. To lay down on there and watch the kids dance and play around. To read lots and lots of book on there. Just a place to make more memories…

…and snuggle.

I remember hearing 9 months and thinking how short it seemed. Now it seems like such a beautifully long amount of time. I got shorted 6 months..and most of those months are called the “honeymoon” time. I had so much planned to do with her.

But honestly what I miss the most is the average. The day to day life with her…with all of us.

I looked at the couch today and was crushed by the what was..but even moreso by the what wasn’t. And I do know how lucky we were to get the time to know she was dying…to get to hold her and take her to the beach. Please know that I realize how many parents lose their children suddenly..without the warning we had.

But I can’t stop the ache inside. Maybe because I did know…and she seemed to be getting better. So I counted. I bet on time. Time none of us are ever really promised.

So today I was left yearning for that. But not the big trips to disneyland or the snow. Just playing memory game together. And coloring or making pipe cleaner necklaces. My kids…splashing in the puddles.DSC_0261

Today wasn’t like yesterday in that I wasn’t missing the years that could have been

…but only the days.

Even the days where we knew…maybe even especially the days where we knew. So that the only thing that mattered was us. See I know we cannot live life like that constantly. But those months, we thought we had coming…we would have savored and devoured. And I am left so hungry for them.

Pretending the ground was lava together and making indoor swimming pools .. and dance parties for days.

She is in every part of this house. We call it the dance room because of her. She has slept in every room of this house except the play room and master bathroom.

When we are “all” here and awake I start to get so fidgety…my skin feels like its crawling and feel like I am forgetting something. I keep looking at the time…Like I need to get somewhere to pick her up. I know in my head that’s not the truth…but my internal clock doesn’t. And I feel so uncomfortable…and just simply out of sorts.

I keep thinking she is going to walk in the room or that I should wait to do whatever we are planning on doing because..well because we aren’t all here. I know logically we will never all be here again.

I know she is dead. But its like parts of my body haven’t caught up yet.

…not sure if I want it to.

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