Written by Annie Harper

The most surprising aspect of my mental health journey has been my quickness to irritability. I’m still very frustrated with my lot in life: my child has Joubert Syndrome; he has no mobility or speech, life expectancy is unknown; and it’s unlikely he’ll enjoy an independent life during adulthood. 

So why my child? That subtle question triggers irritability and can unintentionally manifest itself in interactions with my able-bodied children. Why their brother? I feel like they should understand, but why should they? How could they, when I am still processing it too? 

They are kids just being kids, and I am still a work in progress, trying to prioritize my mental health through a bi-monthly appointment with a free therapist, thanks to the June Jessee Memorial Foundation (JJMF). 

Mental health can take on many different forms. Irritability is what I am managing now, but in the beginning it was anxiety and PTSD. When our youngest son, Joe, was diagnosed with Joubert Syndrome during his 20-week ultrasound, we were very unsure about the viability of the pregnancy. We prepared ourselves for the possibility of not meeting our child. This was the first time that I experienced a panic attack. Shortly after Joe’s arrival, we suffered another traumatic experience that landed him back in the NICU due to breathing complications. After many weeks of uncertainty, Joe left the hospital. However, I experienced many post-traumatic stress episodes while learning to transition into a pandemic world with a newborn on oxygen. 

Fortunately for me, the June Jessee Memorial Foundation and its founders walked this path before me, realizing the necessity to provide free mental health services to caregivers of neurologically complex children so that parents like me don’t have to endure the financial burden associated with seeing a therapist.

Annie Harper is the wife of George and mother of George, Mac, and Joe and a board member for the June Jessee Memorial Foundation.

Learn more about the June Jessee Memorial Foundation here.