It will be four years on the 11th March 2024 since my precious boy passed away. I have been reflecting on my caregiver parent journey, Oh What an incredible journey of both joy and heartache! I faced many struggles and difficulties throughout the years with my late son, but I also experienced moments of peace, acceptance, as well as fulfillment.
Watching my beautiful boy grow and develop in spite of his severe disabilities was one of the most rewarding experiences of my life. He showed me the strength of hope, the power of resilience, and how to live in the moment. Jaden Carl Gallant taught me invaluable lessons about life, love, and faith…
An Extraordinary Boy
Jaden was born on the 16th of January 2004 and he had a form of Cerebral Palsy.
How did it happen? Well, he was in distress at 36 weeks and my concerns as a new mother, at his lack of movement, were not taken very seriously by my doctor, by the time I was admitted into the hospital, the monitors showed Jaden’s heartbeat was weakening and they had to do an emergency caesarian, or he would not make it. That was his first brush with death.
I was so afraid when Jaden came out coughing not crying and my fear escalated when I saw my husband’s face before the doctors rushed off with our boy. My husband got to see Jaden as I was stitched up, I lay alone for a long time not knowing what happened to my little boy, I had not even seen him, and my heart felt like it was breaking.
My extraordinary boy.
My husband came back to me red-eyed and was very vague about the condition of our boy, I was later told that the doctors told him to say goodbye to Jaden and that he was not to tell me how bad the situation was, but I knew…mothers always know. We were at a Private Hospital and could not afford the extra fees they had asked for Jaden’s extra care, so they transferred Jd to a Government Hospital. I bluntly refused to stay at that Private hospital without my son, so I was transferred as well (as if staying was an option Pshh).
The ambulances came to take us, and we traveled in convoy, to the hospital. I saw the incubator with my son wheeled in before me and I started crying. The pain in my chest overwhelmed the pain of my c-section. Told my husband to leave me and not let Jaden out of his sight
My son was delivered late morning and I saw him for the very first time the morning after. My night had been an agonizing journey of physical and emotional trauma, my patience to see my boy had been stretched to breaking point. So, you can imagine how I felt when they told me the next morning, I had to wait for the doctor to do his rounds before I could see Jaden, at which point I pulled out my drip and catheter.
I didn’t care that they all yelled at me, I didn’t care that the agony seemed to be blanketing me in its iron grip hold or that I could barely stand let alone walk. All I cared about was seeing my precious boy and letting him hear me say the same words I said to him on his death bed, ‘I love you, be strong for mommy.’
My husband giving Jaden cuddles.
challenges of being a caregiver parent
When my son Jaden was diagnosed with cerebral palsy, more specifically a form of brain damage that had affected most of his motor and sensory functions. It was like a punch to the gut, as a mother, it was devastating to hear that my son would never be able to do some of the things most other children get to experience.
Parenting a special needs child, watching his body slowly become stiffer as he grew up only added to the fear and uncertainty. However, I refused to let his diagnosis define him and instead looked for ways to make sure Jaden lived life to its fullest potential. We leaned into our faith, believed in miracles, and held tight to our hope; this ultimately enabled us to help Jaden defy his diagnosis of doom & gloom and he was able to live to see his 16th birthday.
Resources for caregiver parents
When we first found out the diagnosis, we felt like the world was closing in on us. We were overwhelmed by the uncertainty. Finding resources {1} and support {2} systems for my son Jaden was an ongoing challenge. Being a caregiver parent can be isolating, lonely, and frightening at times.
I had to reach out (sometimes without success) to friends, family, and even strangers to access tools and services that could help my son. This journey taught me to stay proactive in seeking out help wherever I could find it, which ultimately enabled us to build a strong network of support around our family. It also reminded me that when we ask for support, we often get more than we were expecting from the most unlikely places because no challenge is too big when you have faith.
Jaden in a therapy session with the lovely ladies of SARD
Navigating it all
Navigating medical appointments and treatments for my son Jaden was a daunting task. Believe me when I say that my son’s medical file resembled an encyclopedia and I often teasingly told the hospital staff that they should just have a parking space there with my name on it.
Jaden had countless specialists, doctors, and therapists (caregiver parent resources in Cape Town from SARDA-South African Riding Disabled Association-to Red Cross Children’s Hospital) to coordinate with, as well as numerous medications (my medicine cabinet looked like a pharmacy) and interventions to consider.
I often felt like I was out at sea, in danger of drowning under all the unknowns. However, when I reminded myself that I was doing all of this to give Jaden quality of life, it gave me the strength to persevere. A ton of research, lots of patience, and a whole bunch of faith ultimately enabled us to find a way forward through this stormy ocean.
Building Resilience
Learning to build resilience has been one of the most important lessons I’ve ever learned. Each day brought a new challenge or setback, but with the right outlook and determination, I found resolve in the smallest moments. Having Jaden by my side gave me an indescribable inner strength and motivation to not give up hope no matter what was ahead.
Together, we took on each day with courage, faith, and optimism which was why his death hit me so off kelter.
A selfie with my sweet boy, precious memories.
Self-care for caregiver parents
As a stay-at-home mom caregiver to my late severely disabled son Jaden, I have realized the importance of taking care of myself. Self-care helped me stay strong and mentally prepared for the challenges ahead, so I make sure to make time for activities that bring me joy, like indulging in a good book or learning a new skill.
Taking breaks from being a caregiver mom ( in truth it wasn’t that many breaks haha), when Jaden was alive, was one way that I showed him how much he meant to me because it kept my spirit alive. That is something that I will never regret as it helped me mentally even when I was dead on my feet, literally.
Role of a Caregiver parent
Understanding the role of a caregiver for my late severely disabled son Jaden has been an emotionally taxing journey.
The role I played with my son has been one of the most difficult and rewarding experiences of my life. It takes an immense amount of patience, dedication, and unwavering love to care for someone like him – especially in those moments when everything feels crushing or hopeless.
Despite this, I’m eternally grateful for the strength and resilience that came from being a caregiver mom. He showed me every day just how much beauty there is in facing adversity with courage and grace. Jaden taught me so much about unconditional love and faith, these lessons will stay with me forever and I shall wear that ‘badge’ with honor till the day I see him again.
Jaden receiving his ribbon for completing the SARDA countryside challenge
Conclusion
Reflecting on my caregiver parent journey with Jaden: I am filled with regret that I could not do more; hope, that he felt all the love I had for him and the joy, of what he meant to me before he passed away. The dreams of the amazing life he could have lived if only things were different.
Each night, I feel immense pride in the fact that I was his mother and was able to be a part of his incredible journey. I will always cherish the time we had together; treasuring the precious honor and privilege of having mothered such an extraordinary boy.
Charlie
Charlene is a published author/writer who has embarked on a personal journey, with the hope of providing guidance, support and advice to all who may need it.