Since the first of the year, I have been writing a blog post about our story every couple of weeks, from Isaac’s birth through roughly age two, sorting through some very difficult chapters to lay the groundwork for a next hard chapter: the onset of PANS.

My WHY

Each post is part of the very complex story of Isaac’s dual diagnosis with an incredibly rare genetic variation and ultimately also with PANS, Pediatric Acute-onset Neuropsychiatric Syndrome. Telling our story from the beginning is a daunting task but one I am undertaking with intention, with an eye toward helping other parents who (like us) never imagined they would be raising a child with a genetic or neuroimmune disorder, and helping a larger audience understand the trauma many families experience in isolation so that the commmunities we live in can become more aware and compassionate and offer better support.

The process of telling our story is also a next step toward starting a podcast devoted to PANS awareness. Because while Isaac’s genetic disorder is incredibly rare (1 in 85,000-100,000 live births), PANS is not rare at all, impacting an estimated 1 in 200 children and youth. The statistic is even higher, I suspect, for kids with pre-existing/underlying disorders, which is why the details of Isaac’s story are so important. And yet most people–and many doctors–have never heard of PANS. This has to change. This is my WHY.

Our story, the early chapters

If you’ve been following our story and think you may have missed a few installments, or if this is the first post you’ve read and you want to start at the beginning, here’s a guide:

1. The Very Beginning tells the story of Isaac’s birth and the complex mix of emotions I felt as a new mom. (This story was picked up by Baptist News Global, A mother’s honest story: the very beginning.)
2. Not Knowing recounts the feeling I had from the beginning that something was different about Isaac, including questions about developmental milestones, the judgment I felt from doctors, and our first evaluations through Early Childhood Intervention (ECI) .
3. Still Not Knowing sees us move from Chicago to Houston, where the uncertainty continued. We finally did a genetic microarray blood test and expected to get the same results we’d always gotten: reassurance that everything was fine, there was no explanation for his delays, and he would likely catch up.
4. We Found Something details the phone call that brought unexpected news, the ensuing call with my husband, and the profound grief that followed.
5. A Rare Diagnosis is a peek behind the curtain into what it’s like receiving a rare diagnosis for your child and a deep dive into some of the particulars of Isaac’s genetic variation.
6. He’s not sick is the very personal story of my conviction that there was nothing “wrong” with my son and the longer road toward true acceptance.
7. Writing his own story shares some of the words and wisdom that helped keep me going through this incredibly difficult time.
8. Signs of hope is a reminder–even to me–of some of the amazing things we saw in Isaac’s early development, even though it wasn’t typical.

An appeal

Friends, we live in a “noisy” world with all kinds of media, videos and sound bites constantly competing for our attention. And while it’s amazing that writers like me can publish our own material and immediately launch it to the world wide web, it’s also true that a lot of what’s out there does little to create positive change or contribute to a better society. If you connect with my story and think others would benefit from reading it, too, please share my posts with friends through your social channels. Let’s cut through the “noise” to make the world a kinder, more compassionate place.