Dr. Stacey Cohen-Maitre published her first book, “Asher and Stacey’s Magnificent Road Trip”: An unconditional love story
You can purchase this paperback book or ebook on Amazon.com at:
https://www.amazon.com/Asher-Staceys-Magnificent-Road-Trip/dp/B08GFRBLNY
We want to thank the Hal and Sharon Lampert Foundation for their 2023 very generous donation!
We thank the Sydney Stern Memorial Foundation for their generous donation! So appreciative and grateful!
In September of 2020, A Moment to Breathe donated three thousand dollars worth of Ralph’s gift cards to parents and caregivers of special needs children and adults to help them get through the Coronavirus pandemic. Every little bit helps! Please donate!
On January 3, 2020 A Moment to Breathe received our first award, from the Beim Foundation!
We would like to personally thank Dr. Jack Stephenson of the Beim Foundation for supporting A Moment to Breathe!
On October 25, 2017, I was diagnosed with B-Cell Acute Lymphocytic Leukemia, Philadelphia Chromosome. Since then my whole life has dramatically changed. Before being diagnosed, my usual weekday was chaotic. I was driving my sixteen year-old son, who is diagnosed High Functioning Autism and Generalized Anxiety Disorder, to his twice exceptional school in Studio City, which took an hour every morning in rush hour traffic from our home in Northridge. (My husband took our two other children to their local schools and our oldest son, Asher, who is diagnosed with severe cerebral palsy and cortical visual impairment, was transported to his day program via bus. However, just a year before, we were taking our four kids to four different schools every morning!) After I dropped off my son, I drove another ninety minutes to two hours to my job as a vendored psychologist at Harbor Regional Center where I conducted eligibility assessments and provided consultation to families of children and adults with developmental disabilities. If I didn’t drive to Torrance, I drove from Studio City to Simi Valley where I also worked as a vendored psychologist at Tri-Counties Regional Center or to my private practice in Tarzana. After I assessed two children, back to back, I left work, ate lunch in the car to save time, and then drove to Studio City to pick up my son and then I picked up my other children. We often had medical or therapy appointments for all of my children in the afternoons. After returning home, I cooked for six hungry people, did the laundry, tidied up the house, helped my kids with their homework if they needed, and if I wasn’t passing out, wrote a psychological report or two. (Most of the time I wrote reports on the weekends due to my level of fatigue during the school week). To his credit, my husband was of great help especially in terms of showering of our oldest, multi-handicapped son but because I was home earlier them him, I was the one who took him out of his wheelchair upon his return home from his day program. And after I changed his undergarment (known as a diaper for infants and toddlers), I fed him his dinner due to his maximal dependence. All before my husband had returned home from work.
During this every day grind, I remembered praying to God and asking, “Please allow me to keep doing this for the next year and a half (which was when my second oldest son would graduate from his inconveniently located school). However, the universe made its own decision, in the form of my suddenly having leukemia and in turn, I was forced to abruptly stop being super mom to my super kids.
I was that stereotypical parent of special needs children. Meaning, I hardly ever took any meaningful time out of my day to nurture and take better care of myself. Rather, I put all my eggs in one basket- My children and their pressing needs. My husband, bless his heart, was just like me. We were both extremely negligent about taking care of ourselves and each other. And wouldn’t you know it, I was the one who would pay the most for this negligence.
I have been in and out of the hospital for the past year and a half while receiving treatment for leukemia. Chemotherapy by mouth, intravenously, and intrathecally (injected in the spinal fluid), brain radiation, lumbar punctures, bone marrow biopsies, and an assortment of supportive medication to be taken at various times throughout the day. In March of 2018, I was hospitalized for a month straight which was when I had received a bone marrow transplant. A twenty eight year old man from Germany was my match and I am so grateful to him for giving me a second chance at life. I am also tremendously grateful to my sister in law, Alex Cohen (who is really more like a biological sister), for getting me connected to UCLA oncologist, Gary Schiller, M.D. and nurse practitioner, Karolina Faysman, RN, in the nick of time. Most of all, I am so grateful to my family and friends for their constant love and prayers.
In the summer of 2018, just when I thought things were going really well, considering the trajectory of recovering from leukemia, I developed double pneumonia and almost passed away. I recently read that 80,000 people die every year from pneumonia and many of them did not have a chronic illness before they were sick. I made it even with a chronic illness and a very poor immune system. Thank you, universe.
These days I mostly lie in bed and rest due to the extreme fatigue associated with my recovery. I am no longer supermom. Obviously, I can’t be. I’ve come to listen to my body and allow myself the opportunity to rest. I am finally understanding how rest is so healing for your mind and body. I am also eating more thoughtfully and not while driving. Now, I actually sit down at my kitchen table and eat a meal. I am unable to work right now because of my health status so if I’m not feeling a little scattered from taking steroids, I’ll take time to read and write. I also text and call my friends and family and tell them how much I love them. Often times I look out of my bedroom window and stare at the beautiful green leaves on the trees. If it is not too chilly, I’ll sit on a lounge chair outside, stare at the blue sky and majestic trees and listen to the trickling water cascading from our fountain. When I am not alone at home (which is a luxury since I was never at home when my kids were at school), I’ll spend time just talking with my husband and kids in a relaxed, unhurried manner.
I’ve also had time to finally create this charity, A Moment to Breathe. I came up with the idea for this charity about five years ago but never had the time to make it happen as I was in my autopilot life. There were never enough hours in a day to start one. However, because I have some time now, I was able to get this charity off the ground and I am very motivated to make a positive difference in the lives of parents and caregivers of children and adults with special needs.
After all, I know what it’s like . . .
Please take a moment to breathe.