It’s June 14, 2022. Today marks four months since you’ve left this earth. I miss you so much. I miss hearing your voice, especially your laugh. It was so distinct and contagious. I would do anything to talk to you one more time. It still doesn’t feel real that you’re not here.
So much has happened in the last four months. Doug and Jaime moved into their new house, and they’re expecting. Ethan’s going to be a big brother! Yesterday they had a gender reveal party via Zoom. They had a cake made, and inside of it was the color of the gender. When they cut into it, the cake had various shades of blue. Congratulations “Zaidi,” you’re having another grandson! He’s due in December.
My book, An Untethered Truth: A Medical Journey, was released this past April! It’s available in both paperback and eBook. Every day, I am doing some form of art. Whether it’s art or writing, I’m continuing to create. I miss sending you text messages with updated photos of my artwork. In the back of my head, I can hear you asking me, “Did you do any art or writing today?”
Tomorrow, I will meet with my neurosurgeon. The symptoms of my tethered cord syndrome have been getting worse, and it’s concerning. It’s looking like spinal shortening surgery would be the next step. It’s a complex surgery, where vertebrae are removed, to make the spine shorter. This will allow my spinal cord to have more slack. Right now, my spinal cord is tethered to my tailbone, causing abnormal stretching.
I’ve been educating myself on this surgery, reading various medical journals on the success rates with tethered cord syndrome. The studies are promising. I’ve reached out to various online support groups, speaking with people who have had the surgery. Every person I’ve spoken with said this was the best decision they made. One person shared how she was bed bound for two years prior to spinal shortening surgery. After she had the surgery, she was able to drive again and go to college. Others have said they were pain free, and able to enjoy life again.
I wish I could call you after my appointment. You were the first person to know what was going on with my health. This will be a difficult decision to make, and I’m nervous. I wish I could give you a hug.
You’ve always reminded me that “I am my own best advocate.” I promise, I’m listening to your wise words. You taught me that my voice matters. I will never stop speaking up for myself.
I know you’re watching over me and will guide me in the right direction. Thank you for looking after me, Doug, Jaime, Ethan, and baby boy Coval. We all miss you so much, and wish you were here.
I promise, I will continue to make you proud.
I love you, Dad.