by Cindy Lamb
Watching your child struggle with an illness, whether it is a cold, a broken leg, or a bout of poison ivy, you feel every sensation of their pain, discomfort, and fear of the unknown. You try old remedies from your own childhood, over the counter drugs and doctor’s prescriptions to soothe and comfort them. Your pain subsides only when their discomfort begins to wane. It does not matter if they are 3, 13 or 30 years old. As a parent, you feel for them physically and emotionally. Putting your own internal anguish aside to search for the answer that will make them comfortable is the only focus of your being in the moment. Only then, when they are comfortable and at peace, can you allow yourself to feel…anything.
When my son was diagnosed with Grade 4 Glioblastoma Multiforme February 6, 2019, I remember the exact moment every single thing happened over the next 18 months while I held all my physical and emotional anguish in a small uncomfortable place under my heart. What I allowed to escape my heart for all the world to see, and for him to see, was how to make it through every day with the most positive outlook possible. God set the stopwatch to eighteen months, I did not have the power to change that, but I was determined to make every minute count. BUT it was not how it counted for me; it was how it counted for him.
We did not spend a lot of the precious time discussing, “How do you want to be remembered…how do you want to die…where do you want to be buried…who do you want to have your stuff…” There were short conversations about a few of those things as needed, although most of it was unspoken. We did not even spend time saying, “I am sorry,” for past issues. Those no longer mattered. It was the here and now that was important to him. He spent the time looking for normal things to do, together and with other family and friends to create memories. He had 18 months to live an entire lifetime with the people he loved and cared about, and a ticking stopwatch that was fast moving to zero.
Jason was extremely intelligent. I did not have to tell him what his choices were. No one had to remind him to go to the doctor, to treatments, to pick up prescriptions. Most importantly, no one had to remind him that this was his disease, his terminal diagnosis, his stopwatch. He searched out others who were going through the same journey as he was and became their friend. He talked about these people as one would talk about a hero or mentor. I never asked, but I believe he watched them, the true experts, and learned how he wanted to walk down his own path. He maintained a positive attitude and normal life to the best of his ability. He did not look for sympathy. He did not talk the about doctors, surgery, treatments and how he felt. He continued to work full-time for as long as he felt he was contributing. The most remarkable thing that I saw in him: he was not angry. Never once did he ask, “Why?” He did tell me several times when I was being overbearing to back off. Hovering was not allowed, regardless of how much I needed it.
I lived 800 miles away during his journey, but I was able to spend a substantial amount of time with him. We took random road trips to see things he had heard me talk about over the years. We went to river towns where I grew up. I told him stories about when I was young and about when he was young. He insisted on eating “roller dogs” from roadside gas stations; we walked old cemeteries and riverbanks. We planned weekend trips. He was a foodie and always in charge of feeding me. He could make a lifelong friend out of anyone, anywhere. I put myself in charge of surprising him with things I was sure would make him happy. I needed to keep that smile on his face as long as possible, for both of us.
With his 40th birthday approaching in December of 2019 he wanted a party, but nothing too splashy, and most importantly, no gifts. He is my son. I must give him a gift. What do you gift to someone who is about to die and celebrating what most likely will be his last birthday? I tried several ideas like contacting his favorite musician, author, etcetera, to no avail. One thing he always had to deal with as a child and as an adult was his middle name: Duane. For many reasons he hated his middle name, too many to list. As an adult he told people his middle name was “D.” When that would not satisfy curiosity, he would tell them his middle name was “Danger.” So, for his 40th birthday I told him that we were going to go to the courthouse after the holidays and legally change his middle name to “Danger!” The look on his face and the tear in his eye told me I should have done this sooner! He leaned in, kissed and hugged me, and said, “Mom, I know you love my name. Just the fact that you are willing to change it…that is gift enough. But please put that on my headstone.” The happiness I saw in him on that day with friends and family around, knowing I would do anything to see him happy – that was enough for me.
We continued to hang out, talk, and bond in an unusual way. Even the trips to the doctor’s and various treatments became occasions to find a new restaurant, have a cocktail, tell a story, walk in the park. Most importantly, we continued to find ways to enjoy life in the moment. We never discussed the stopwatch. As the cancer took more and more of his brain, sometimes it was harder for those around him than it was for him. His short-term memory became affected. He could tell you what his grade was on a sixth-grade exam but could not remember he had just eaten a double cheeseburger…so I would get him another cheeseburger.
The stopwatch took his ability to drive, then his ability to work, his ability to read, to reason, then some of his physical mobility, and of course a lot of his short-term memory. He took all of this graciously with his chin up and a smile to light the room. He still dictated who he was around, where he wanted to go, but never dwelled on his illness. He did not like to be uncomfortable and would let us help him with that, to a point. We would pull the car to the door and let him out, make sure assistance was available for long walks in hospitals, etcetera. But, when we were in a social situation, he maintained full control…until the final sweep of the stopwatch.
I thank God every day that he only lived eight days with no control of his life. This was the most difficult and devastating, for both of us. He could hear but not speak. He could feel but not react. He could see the end but was not ready. He knew. He fought hard, the indignity of not being in control of his body was completely devastating to him. The anguish was in his face, in his eyes, in every muscle of his body. The turmoil he was in was like a knife to my heart. I protected him as much as I could. I told him, I did this for you when I brought you into this world and I will do it for you now because I love you the same now as then. That helped to calm him. We only allowed a few of his closest friends and family to visit in the final days, his inner circle, to preserve his dignity. Again, I thank God every day that it was only eight days, for him and me.
Jason did not die happy because he did not want to die. I deal with that off and on in my own way. I am glad he did not want to die and what I always reach for is that he was happy, as one with a terminal illness could be, in the seventeen months before the final eight days. If I could offer any words of advice to another parent going through similar circumstances, I would say do not grieve before they die. Be happy with the time you have. Most importantly, help your child be happy and enjoy life. This is their disease, not yours. Support their decisions whether you agree with them or not. Look for simple ways to put a smile on their face…that is the memory that will get you through the dark days after they pass.
Since Jason passed on July 14, 2020, I have continued to travel to some of our planned destinations we were not able to make. I spread his ashes everywhere I go. He would like this. He would have done this for someone else if he had the chance. That is how I get through each day. All of the people who loved Jason, who knew him intimately, continue to do things that would make him happy. They talk about him. They share memories online randomly. They keep him alive because he made such a profound impact on their life, and they cannot imagine life without him.
Jason’s only son became a father on August 17, 2021. Jason would have been proud to be a grandpa. His name is Maxx. Maximum Danger Eastham.
About Cindy Lamb
Cindy is the Business Development Director for EGH Architects in Biloxi and Jackson MS, and lives in Diamondhead, MS. Lamb is deeply involved in the coast activities having served as the President of the Pass Christian Chamber of Commerce Board of Directors; President of the South Mississippi Contract Procurement Center Board of Directors; President of the Gulfport Business Club; President of the Gulf Coast Symphony Orchestra; Program Director for the Gulfport Rotary Club; Leadership Gulf Coast Board of Trustees and the Mississippi Gulf Coast Chamber of Commerce. She also volunteers much of her time to various committees, municipalities, and non-profit organizations across the coast.
The Gulfport Rotary recognized Lamb as a Paul Harris Fellow and Outstanding Rotary Spirit 2017. USM awarded her with the Charles Ueltschey Family Economic Partner Scholarship, and in partnership with MEDC the Jimmy and Ray Heidel Award in Economic Development. She is a 2017 graduate of Leadership Gulf Coast, 2018 Graduate of 403rd Keesler Airforce Base Civic Leadership, and 2018 graduate of the Gulf Coast Business Council Master’s Program.
Forever chasing knowledge, Lamb is an honors graduate of MGCCC with an AS & AA, magna cum laude BA graduate of Tulane University, and recipient of the prestigious Tulane 34 Award, and USM True South. She is currently a student with University of Oklahoma in the Economic Development Institute. She plans to pursue her master’s degree in Economic Development to enhance her position with EGH Architects.
In addition to the position at EGH she is an accomplished photographer, a published author, flips houses when she can find one, and her most prized and rewarding positions: mother, grandmother and great-grandmother!
Previously Lamb has worked in non-profits, was a residential general contractor, residential designer, worked in retail (for a very short period of time!), college instructor, fine dining restaurant manager, event planner, graphic designer, secretary, bartender, city alderman (even ran for mayor once)! She hopes to decide on a single career path when she grows up.