Monday, February 2, 2020
Lots of gray. Happy, happy, side slammed by hysterics, worries, and a touch of ocd.
Super Monday was not so super. The half-time show last night was a bust. Something happened and although I saw it bubbling for most of the day the eruption still caught me off guard (how the hell does that still happen?). I wasn't prepared for how bad it was and I wasn't prepared to help her - at least not for about 15 minutes. I tried to parent it out of her. Deny it. Consequence it out of her.
Finally, my senses returned and I embraced my PANDAS PANS Mama role. I sat on the bed and opened my arms and she crashed in. Her tear streaked face looking up at me so helplessly, "Mommy I acted like a crazy person. I'm so ashamed."
And I am gutted.
"No honey. You had a really tough time and I didn't help you with it. I'm sorry. It's okay. You're okay. I love you."
Honestly, THIS is what she has to carry? The weight on her shoulders must be crushing. ARGH! How can this be her reality? Fine one day, a mess the next.
My god I'm so filled with anger. Shame overcomes me in those moments because I can't fix this. I have to figure something else out. This isn't working well enough for her. Surrounded by friends with colds and flu mist vaccines (live shedding vaccines) the vitamins are not enough for her. She needs something more.
I'm just so angry. Sadness.
Strength. Love. Hope. (sometimes you fake it til you make it)
Bumping Along, Singing My Song
Thursday, January 23, 2020
I hate to write this post. I'm pissed off actually. She's been bumping along again since September (at least...I think...hard to remember). Multiple flare protocols, upping this, reducing that. Breathing a denial-ridden sigh of relief when she has a good couple of days. Swearing and trying to contain my anger and absolute frustration when it's back.
This morning was scary. Clothes. Nothing felt right. In tears of frustration she looked at me helplessly. Yesterday a beautiful day at the mall. Normal. Mommy-daughter day, shopping and buying some new things. Comfy things. Happy things. Then - it's all bad. Bad. Bad. Bad.
I can barely contain my rage. I am so tired of fighting this for her. So tired of watching her struggle. Filled with worry for what this is doing to her psyche...what it has already done. The shame. The brokenness of it all.
Broken. That's what it feels like. Damaged and broken. Like myself. What to do. What to do. Today, I do not know.
It could be worse.
It was better. A year and a half of better. And now I scurry to try to catch up and get that "better" back.
I think it's too late. That bus has left the station and we're sitting here with PANS. That son-of-a-bitch PANS.
Embrace. Support. Love. Manage.
This is life. The only one she's got. Do better Mama. Do better.
Strength. Hope. Love. I'll pull her through.
xo
I hate to write this post. I'm pissed off actually. She's been bumping along again since September (at least...I think...hard to remember). Multiple flare protocols, upping this, reducing that. Breathing a denial-ridden sigh of relief when she has a good couple of days. Swearing and trying to contain my anger and absolute frustration when it's back.
This morning was scary. Clothes. Nothing felt right. In tears of frustration she looked at me helplessly. Yesterday a beautiful day at the mall. Normal. Mommy-daughter day, shopping and buying some new things. Comfy things. Happy things. Then - it's all bad. Bad. Bad. Bad.
I can barely contain my rage. I am so tired of fighting this for her. So tired of watching her struggle. Filled with worry for what this is doing to her psyche...what it has already done. The shame. The brokenness of it all.
Broken. That's what it feels like. Damaged and broken. Like myself. What to do. What to do. Today, I do not know.
It could be worse.
It was better. A year and a half of better. And now I scurry to try to catch up and get that "better" back.
I think it's too late. That bus has left the station and we're sitting here with PANS. That son-of-a-bitch PANS.
Embrace. Support. Love. Manage.
This is life. The only one she's got. Do better Mama. Do better.
Strength. Hope. Love. I'll pull her through.
xo
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