Friday June 23, 2017
I don't know how long it's been. I'm not sure if it's been weeks or a month. I can't even go back and look at my group posts to check because I don't think I have bothered to post much (at least I don't think I have). It's all a blur. The pit in our stomach when it's time to get dressed is back. Her fears of being alone in a room, even her own, grind her independence to dust. "Mommy WHY is it coming back?! I don't want to feel like this!" I don't know exactly how long it's been back, but it's here.
We are bumping along. At eight-years-old there is more capability to reason so we are able to process her emotions a little better than before. Listening to what it feels like to have her body betray her again is crushing but it is something I can do for her. At times it is all I can do and the most difficult thing to do. To listen without trying to help her; no advice, no suggestions, no directions. Just quietly hearing her and seeing her and really being in the moment with her. Sometimes it is the only thing I can do.
We are all doing much better in our actions if not in our hearts. There is a resolve that has moved in which is at once a welcome calm and a frightening realization that this may be our "normal". Up and down. Peace and torment. Healthy and sick.
What is it this time? She either has a cold or allergies and either one could be causing symptoms. We are trying different OTC allergy meds with no luck so far. A new nasal spray will be here tomorrow which has some promising results with other kids like this. One other lyme herbal is coming and we will hope something gets us back to healthy.
I am nearing the end of my hope that herbals and supplements might be the answer. They have helped and we've made tremendous progress in pulling out of the horrid flares we fought for the last year, but I want MORE.
I want my daughter to be able to wear whatever she wants to wear. She doesn't have to like how jeans feel but she should be able to wear anything she WANTS to wear. A comfy pair of shorts should not produce so much trauma. I loose nightgown shouldn't be too overwhelming to put on. So we'll try a few more ideas, wait to see if symptoms subside as this head cold or allergy attack passes, we are trying some behavioral therapy techniques. I've set a date in my mind and if we have not leveled out again by then it may be time to revisit antibiotics.
Progress is wonderful but we need consistency. We need to feel secure in knowing that we won't be thrown in to another horrifying flare without warning. When they start we never know how bad it will get or how long it will last. There is no magic ball. We just hold our breath and I throw what I can at it and hope it sticks. Spaghetti at the wall, as one of my PANDAS/PANS/LYME mom friends tells me. We aren't better "yet" but we will get there. The moms who walk this path with me are in my head - they get free rent up there, coaching me and speaking words of wisdom from the experience they too wish they never had.
Our hearts are not broken today - we refuse. Today is our first lazy-summer-morning, when we get to veg out all morning long. We need the break. We are warriors, she and I and her little sister, fighting different battlefronts of the same war. The three of us are talking about this journey, exploring the experience, and making decisions about how we handle the rough spots. These are two amazingly strong little girls for all they've been through. I am one incredibly grateful mommy. I am also one incredibly stubborn mommy and I will not stop.
Strength. Love. Hope.
