As many of you know, my daughter Liv was diagnosed with PANDAS about 9 months ago. It has been a really long road, which eventually led us to a therapist — which Liv did not love the idea of.
“Why do I need to go to a stranger and talk about my problems?”
I am thinking. “Because the truth is that I need help, and I truly am wondering if I am suffering PTSD.” I can barely handle when one of the kids has a hangnail without my skin crawling.
So you can imagine, I practically ran to the therapist this summer, after our 17 year-old son called us when we were out at dinner.
“Mom, why are you not answering your phone? I am really sick. You need to come home.” Not many 17 year-old boys call their mothers unless they REALLY need you, so you go. He was worried he may have mono, as he had been exposed. This all was happening one week before school was to start — his senior fall. Thankfully, it wasn’t mono, but it was strep, and if you know anything about PANDAS, strep is like the plague to a kids with PANDAS.
Here comes the PTSD…
I called the therapist, realizing that I really needed help. I needed to tell her that for 3 years, I have been in and out of hospitals with my family, and I think I am going crazy. I needed to unload the whole story, even if she didn’t say a thing. I needed to get it ALL out, so I vomited…thinking it might unburden me.
“Mother: Parkinson’s Disease; dog: cancer; son: broken wrist, lacerated spleen, ICU, Lyme; mother: broken hip; son: stress fracture in his back; other son: emergency appendectomy; PANDAS and Lyme.”
We all have shit. We all suffer something. I feel like I have been in a river, with the water ripping through, and someone keeps handing me rocks to hold up, and I’m trying desperately to stay above water. At some point, the rocks just get too heavy. I don’t feel bad for myself; I just need a break.
The therapist said very little, but what I remember is her saying “Your well is dry.”
The next day was Liv’s appointment, one week prior to school starting. Liv was still having frequent panic attacks or episodes — shocking and upsetting for a child who previously never experienced any anxiety. I was thinking, “How the hell are we going to get her to school?”
The therapist asked how Liv felt about going back to school. Liv was very composed and said…
“I know I need to go to school, and my mom has to be tough, and no matter what, she has to make me go, and I know I need to stay for the whole day. I know this is going to be hard for my mom, but I need her to be strong.”
I bit my lip, trying not to cry. How could she be so brave?
So here we are, one week into school, and Liv has gone every day — some better than others. When she gets in the car, and I ask how her day was, she says, “It was okay. I had another one of those out-of-body episodes.”
I ask, “What did you do (get a teacher, EFT, get your lavender roll on)?”
She says, “Nothing; I just hoped for it to pass.”
It makes me sad to picture her struggling through something by herself, but I know she needs to learn her own strategies. It reminds me of a time when she was little, and I would put her to bed. I had read one of my favorite books, The Help, and we would recite from the book, ” You is brave. You is strong…” as our prayer or mantra before bed.
One night recently, I turned to my husband before falling asleep and said, “It’s crazy how one case of strep has changed this child’s life.” I wanted to be in the ‘it’s not fair‘ camp.Sometimes we want to feel badly for ourselves, and then it passes.
He simply stated, ” It’s the hand we were dealt. Everyone is dealt a different hand, and we will get through this.” Sometimes I wish I could be him, so matter-of-fact.
The next day, I received a heart-wrenching email from a mother who had a 17 year-old with severe brain damage from Influenza A. My husband was right; we all have a struggle.
And just when I think I can’t do it anymore, I am reminded…
You is brave. You is strong.
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