By: Mia Thompson
As a mother of a child with special needs, my husband and I often find ourselves trying to comprehend the unique workings of our son Max’s mind. When a rare medical diagnosis is introduced at just six months old, it can feel like a chaotic whirlwind of uncertainty and fear. Yet, we strive to stay grounded in the present, navigating each day with love and determination.
In many ways, my mind resembles a bustling train station—full of activity without a clear map. It’s a complex hub where only a limited amount of information can be processed before it spills out in unexpected, sometimes comical ways.
You may recall those old public service announcements depicting a brain on drugs with an egg frying in a pan. If that’s how a drug-affected brain looks, then the brain of a special needs mom is like an extravagant omelet filled to the brim with ingredients: ham, cheese, bell peppers, spinach, and so much more. It’s an overwhelming blend of thoughts and emotions that can only be contained for so long before it all needs to be folded back in.
Thoughts race through my mind: Will Max walk? Will he talk? Will he have friends? Will the world treat him kindly? As I sit in front of my computer, I hesitate over the email to his fourth-grade teacher, worrying it might be too long. My inner voice shouts “YES,” but how can I edit my child? So, I hit send and take a deep breath.
I often jest that I should have pursued a law degree, as it might have simplified the complex IEP paperwork I deal with regularly. Yet here I sit, grading my college students’ assignments in the waiting room of Max’s occupational therapy session. One of my students recently overcame a significant learning challenge, and I’m eager to share my pride with his mother, who sacrificed her career to support him fully.
But it’s against the rules for professors to converse with parents of students, so I keep my thoughts to myself, wondering about her journey. As I air-high-five an imaginary mom I’ve never met, I accidentally honk my car horn. No one notices, highlighting the isolation that often accompanies the special needs mom experience—filled with highs, lows, and thoughts too complex to share with even those closest to you.
Occasionally, I find a kindred spirit, like the checkout clerk at the grocery store. Years back, she asked, “How’s your day?”—a question that could lead to tears or triumph. On that particular day, following a tense IEP meeting, I found myself enthusiastically recounting our advocacy efforts, feeling a rush of relief. Fortunately, there was no one in line behind me, and it turned out she too had a child with an IEP, reminding me that we are drawn to one another, forming an unspoken tribe of support.
I constantly wonder if my other children receive enough attention. I know they are learning compassion and inclusivity, which helps me find balance amid the chaos. Each small victory with Max feels monumental, a reminder to stay hopeful. Life, even when tinged with loss, can be rich and beautiful, encouraging us to laugh louder, fight harder, and dig deeper.
If only I could earn points for the mental gymnastics my brain performs daily. Before motherhood, overthinking was a burden, but now it feels like a superpower. I check off tasks on my mental to-do list: tutor paid? Check. Endocrinology appointment rescheduled? Done. Music lessons booked? Of course! And let’s not forget the tiny moments of self-care, like squeezing in a shower.
Recently, my husband shared news about a 21-year-old with the same condition as Max. He’s thriving and spreading positivity, which brought a sense of relief to my husband. But then I recalled the young man’s mention of missed early interventions due to a late diagnosis, and I felt compelled to reach out. My brain is a treasure trove of information on therapies, nutrition, and research, all woven together with a mother’s unwavering love.
I remind my husband that we need to discuss his vasectomy plans, as I have dreams of adopting every child with a rare condition. Time is ticking, and we haven’t yet had our weekly talk about reproductive matters. My wandering womb, which gave life to a remarkable child, is still full of hopes and dreams. Max’s infectious smile serves as a reminder that love can indeed change the world.
In summary, the life of a special needs mom is a whirlwind of emotions, responsibilities, and triumphs. Each day presents new challenges and victories, but through it all, the heart remains boundless.
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