My son wasn’t born with any “special needs.” For the first nine years of his life, he was considered neurotypical by medical standards. However, everything changed when a sudden illness turned our lives upside down.
We faced PANDAS and autoimmune encephalitis, two devastating conditions triggered by strep infections that stripped away his sense of normalcy. These illnesses brought on hallucinations and seizures, and at their worst, left him unable to walk, speak, or even swallow. As he battled to regain his health, we had to relearn how to navigate life together.
Initially, the situation felt overwhelming. The diagnosis, the research, and the wave of support from others were all new to me. I transitioned from a typical mom to a medical caregiver and advocate for my son. I spent countless hours reading journal articles, advocating for essential treatments, and monitoring his health. While friends reached out with meals and visits, our reality had shifted dramatically, and many were witnessing his illness for the first time. They often expressed their sorrow, which I found offensive; neither of us needed pity. When they said, “I can’t imagine how you manage,” I would grumble, “I don’t have a choice.”
People seemed unsure of how to respond and began to pull away. While I understood their discomfort, I felt resentment towards their absence. This anger and hurt led to my isolation, preventing me from asking for the help I now realize they would have been more than willing to provide.
I maintained a tough exterior, accomplishing tasks while crying in solitude. Attending appointments, tests, and IEP meetings became a solitary endeavor. As I continued to distance myself from friends, their offers of help dwindled. The less I connected with them, the less they understood what we were going through. When my son finally spoke again, I found myself celebrating this monumental moment alone, without anyone who truly understood its significance.
Our lives had diverged from those of his peers, and it felt incredibly lonely. Then, about two years into his illness, a glimmer of hope appeared. On a particularly challenging day, he was hospitalized, and I had to cancel yet another engagement. Rather than being upset, the person I canceled on came to sit with me. This simple act was a humbling reminder that I didn’t have to face everything alone. I apologized for my son’s condition, but they reassured me that their presence was about love, not inconvenience.
That day marked a turning point for me. I began to let go of the pressure to be strong and stopped expecting either my son or myself to revert to who we were before the illness. Together, we rediscovered joy and built a community that accepted us for who we had become. Some friends from the past returned, while new ones emerged, all of whom helped us learn and grow.
My son thrived in this supportive environment. He joined a “special club” for kids with unique needs and formed a lasting friendship with his driver. He participated in inclusive leagues, played softball, and found joy in activities that felt “normal.” He raised funds for our local animal shelter and enjoyed swim lessons. With a teacher he connected with and the company of old neighborhood friends, he started reclaiming his childhood. Although things had changed, we embraced them without expectations.
I wish I could claim that these positive changes were solely due to an improvement in his health, but the truth is, his condition remains fragile. He uses a wheelchair, and his speech varies, yet his zest for life is unshaken. His unapologetic nature encourages others not to tiptoe around his challenges.
This isn’t the life I envisioned, and I would gladly trade it for a more “neurotypical” existence. However, I’m grateful for the community we’ve discovered along this journey.
For those interested in navigating similar paths, check out our blog post on intracervical insemination, or visit Make a Mom for expert insights. For additional information on pregnancy and home insemination, Healthline serves as an excellent resource.
Summary
This article reflects on a mother’s journey through her son’s serious illness, highlighting her initial reluctance to accept help and the resulting isolation. Eventually, she learns the importance of community and support, allowing her son to thrive despite ongoing challenges. The piece emphasizes the value of connection and understanding during difficult times, encouraging others facing similar situations to seek support.