365 Days Without YOU

The pendulum of grief. So unfamillair when your not in it and so familiar and startling when your in it. 365 days of navigating life without you Jack, empty forever empty, missing forever missing, clawing my way through the suffering and sorrow. Trying to heal knowing your healed.

I have little words for describing how much I miss my partner in crime. And trust me we did leave a couple crime scenes for special people to clean up. Thank you to those individuals. We woke together, we ate together, cooked together, walked together, rode together, I told you my stories you told me yours, connected. Reading my mind, figuring out yours. Making sure everything was perfect for you, just the way you needed and wanted. Partners connected by the love of a mother. The trust of a son.

And here I sit always wondering how do I keep you close when there are no more shared experiences in this physical world?

We did life together. Hard. Silly. Serious. Simple. Creatively. As I swing on the pendulum of loss it too shows up this way. Hard. Silly. Serious. Simple. Creatively. I don’t miss you’re pain Jack. I miss us because we did life together and now I am struggling to do without you. You were this huge amazing presence that led my way. I am stumbling. Falling. With Grace. Without you. I find myself compartmentalizing emotions to wake, get up, move, function to do life. I find new joys without you and know it’s your gift. Thank you. And some days I allow the sadness to happen. Feeling the feels. Diving into the depth of real loss. Loss of a boy I love deeply.

I am moving inward and outward but never moving on…I’m moving with and without you.

At this one year, the last of firsts, I hope to keep Jack alive in memory. His memories are JOY. As it was from diagnosis day to the moment he flew away was JOY. My dear friend Kim Stephens. Kim is actively leading a movement and space in Chapel Hill North Carolina to support and intervene with families and kiddos living with Hunter Syndrome and other lysosomal diseases. A part of this space will be Jack’s Playroom. To memorialize and honor Jack please consider spreading some JOY by donating a book or toy for children with MPS and their parents who spend quality time in waiting rooms. Waiting rooms that usually are sterile, uninviting environments to changing them to a kid focused, playful space where you just might find JOY. Jack’s Joy, please keep his contagious smile being passed along to others.


Thank you 🙏🏻

Being your mom is and will be the best gift. Even death can’t take that away.

Together Forever
Hand in Hand
Forever in my Heart

6 thoughts on “365 Days Without YOU

  1. What a beautiful story -so well written and meaningful. Brought tears to my eyes but love 💜
    to my heart. Have a million good memories that we will cherish forever. Forever and always in our hearts. Love, DeeDee and PaPa

  2. You are the most impressive boy i never met. I have journeyed with you this past year thru flickering lights, careless & high flying hawks, gazing deers, serene and speedy rabbits. You appear limitless. And you have great taste in music. The strength of your presence is pronounced. You make an impact in that too short a life far greater than most ever could. Thank you for sharing your light and energy with me Jack! I’m a huge fan…keep flying high!

  3. I’m honored to know you and love you, Jamie. Jack will always be remembered, and we will carry his joy forward to other families.

  4. Such a beautiful tribute Jamie! I can only imagine how difficult this past year has been for you. I miss both you and Jack. Please reach out if you would like to get together. Sending lots of love and blessings, Jill

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