11/06/2024
Nearly four weeks ago, my 14 year old angel face died in my arms, in my bed.
Her heart enlarged, her liver growing wildly with the fluid buildup from her weakening left ventricular. Blocked carotids, occluded renal arteries and diffuse coronary stenosis. Progeria ages kids 8-10 years each year, taking them like the elderly.
She didn’t want the wheelchair, she didn’t want to skip school, she didn’t want special treatment. She wanted to love and be loved, she wanted to surround herself with family and friends, nourishing her body with good food, music and all the expensive beauty products. Her make a wish opportunity was approved, but she couldn’t think of a single thing she wanted, and so we rested, read, tiktok’d and laughed as much as we could.
I am so proud of my girl. And my heart is shattered into a zillion pieces. Watching her age at the speed of light, and knowing she saw it too was very hard, nearly unbearable; but we did our best to honor the time we had.
If you know me, you know about the Carly plan. Now I find myself without purpose and missing my co-conspirator.
I’m incredibly proud to be Carly’s mom. It has been my honor and such a privilege to guide, protect, love and cherish her. I pray that she’s not scared, that she’s happy, capable and safe with her physical body no longer holding her back.
I could not ask for a better village to grow up in, to support her, to cheer her on, to lighten her load, to care and comfort her and lift her up. But also in her decline, her death, and her legacy.
My plan now is to practice gratefulness for all that I have learned from her life, and from the uncharted motherhood path I walk.
