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It feels like yesterday: Grief at one-year

This is how I want to remember you... us! Happy, silly, in costume, playing with your sister and me being your Mom. 
The fog has returned
My focus and clarity gone
Grief has settled in again

I am tired; my body slumps and is too heavy to carry. I want to sleep.

We are now in the last days before Xavier died. He was alive this day last year. But on May 13 there is no living memory of him last year, aside from a couple hours of unconscious sleep before he took his last breath beside me. I held my breath with him waiting for the next and it didn’t come.

We had a great few days this week last year and he was full of laughs, full of life! We saw a glimpse of this again in ICU. Then he deteriorated. 


The zipper that keeps us all inside Earth started to split. His connection to this plane was ripping apart. When the zipper fully detached he was opened to eternity.

This week has been challenging, constantly fighting back memories of this time last year. Painful memories of life and death decisions. Time is nothing. It hurts just as bad now as it did last year. My grief had been contained, but is now wide open. 

But, on this, the first anniversary of your death Xavier, I want you to know I am doing ok. Before you left I made a promise to you that if you go, I will be ok.


And as hard as some days are, I am ok.


Living without you physically here has tested my strength beyond anything I have and will ever face. 
I would have carried your 70 lb broken body up and down those stairs and in and out of the car forever if it meant I never had to live like this now.

But imagining you now in Heaven running around pain-free and barrier-free like you wanted keeps me going. God’s grace saved you. Deep down I know this is how it had to be and I take comfort knowing this is also what your heart wanted. Not to be without us, but to be free. I am so proud of you for everything you accomplished in your short life and how you so maturely handled the life you were given. I am also certain you are becoming an even brighter star in Heaven.

Thank you for all the lessons you have taught me and will continue to as I move forward in this new life. I am a changed person since you left and to say it is all bad would be a lie. You have made me better, stronger and more loving.


I promised you I would be ok and please know that despite my tears, I am ok. I just miss you deeply. I will keep sending my love to you forever and await the day I will see you again!



Love, Mom

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