Friday, November 5, 2021
Relapse is not officially what this would be called but the word fits the experience. Her mind and now her body, overcome. As a mother, helplessness is my undoing. I've kissed every boo-boo. I've tucked in every sleepyhead. I've hugged every fear away. I've stood between her and harm's way. I've swooped in and saved her from certain injury or death. I've calmed every worry, advised every problem, and made sure she has been okay. When she got sick so many years ago I figured it out when all the doctors had no clue.
This time, there has not been a damn thing I could do to stop this. I have watched for 2 months, as the life she knows slips away. Severe PANDAS in all her glory has finally taken her due. We are no longer one of the "lucky" ones. We are no longer a mild/moderate case. We are in deep and at times I can not breath.
I'm likely only writing because we've finally seen some signs of relief just this week. The relief comes from a dampening of symptoms, not from any real healing but it is welcome. I am busy lining up new specialists, making appointments, getting on wait-lists, scheduling additional testing, and working our way through a stepped up treatment plan one phase at a time.
The darkness has been black as night. I can't write about it yet but I imagine if you've lost someone who was your breath, your beating heart, the experience and depth of that grief would be similar. The difference is, I can see her form, I can touch her sometimes, and I can hope that she will be back.
What I can write about is how we are moving through this one and the clue lies in this very sentence; we. She says, "I, not we" and "my, not our." At 12 years old she's differentiating now and letting me know she needs to own this somehow. HER grades. HER homework. HER doctors. HER illness. HER fight. She's letting me know this is not my battle. She's not completely there yet because she still needs me and because she is sick, but there is a shift.
Differentiate. My struggle is and has from day one been letting go but at every single necessary step of the way I see and I do it. This will be one of the bigger letting go's but it will happen. I'll still fight like hell. I'll still be in it with her. But I'll be her teacher and she can now lead some. She chose part of her own treatment yesterday. Empowerment.
My little girl is not so little anymore and it will do her no good to pretend that this isn't what it is. So I'll help her fight. I'll help her to heal. I'll help her to choose. Whenever I can, I'll walk beside her or right behind her. There will be times when I need to lead but it is no longer all I will do.
She needs to find her own strength, hope, and love.
