Echoes of hope

I started journaling when my trenches were just dips in the mud. It started as my son’s food diary and notes of medications, doctor visits and symptoms so I could be prepared. I had no idea how important those things were until I needed them as our journey got more complex and heavier. As things got harder, the notes turned into entire journal entries, detailing the day, the behaviors and symptoms we saw, along with how we were feeling. It was so messy on the days that things were terrible, and I was drowning. The typing was erratic, scattered with random thoughts and sadness and typos. No one understood what I was going through, and it was the only way I could ‘say’ those things you don’t want to say out loud. It was the only thing that got me through some of the truly dark weeks and months.

I took a break during a particularly hard year where I had to focus more on my mental health and my willingness to participate in the world. When I went back, the previous words were all too traumatic to read over. It felt like dumping salt into a healing wound. I left it alone completely for another two years while I struggled with crippling PTSD, depression and anxiety.

I came back again to the file with fresh eyes. It was 57 pages chronicling the journey we had taken on the passage through the soul sucking, life altering diagnosis of PANS. I realized what it could be: a road map for other families. A comforting hug. An ah-ha moment. I thought about the books I’d read from other PANDAS/PANS parents and how validating and important it felt to be seen. That’s why, after lots of medication, therapy, and time, I went back to that file and decided to fill it out, detail it and really give it my all.

If just one parent reads it and thinks “wow, this is exactly what we’re dealing with” and chooses to ask their doctor for testing, then I have succeeded. If just one medical professional reads it and realizes it’s not the first time they’ve heard something like this and decides to learn more about it, I have succeeded.

If I can help any families to avoid the long, drawn out and treacherous battle that others and I have faced while looking for diagnosis and treatment, I will have succeeded.

This book is in the works and is called Echoes of Hope.

I can’t see you at the beginning of your tunnel, but I hope you can hear the echoes coming from the end of it, where I sit reaching my hand out. You can do this, we can do this; we can push awareness.