We leave in a couple of hours to see Dr O for more tests and an IV medication to detoxify her system in the hopes that it reduces inflammation and provides healing. I want to test for everything we can this time before our insurance deductible resets in a few weeks. Heavy metals, mold, vitamins, minerals, and the normal ANA, CBC, and CMP.
This morning I let her stay home from school; I would have picked her up 2 hours in to her school day anyway and she can use the rest from this rough week. I also let her stay home because I wanted to give just one peaceful morning to her little sister. My kindergartner woke up before me, got dressed, and was making her bed when I came to her room. She is a child of this illness too but in a different way than her sister. She tries to be extra good, extra sweet, extra loving, to balance out all the yuck that this illness brings to her world. The screaming, the unpredictability, the mommy-time she's robbed of because her sister's needs must be met as they arise, no matter when or where, or else. Waiting on the sidelines so much of the time, I wonder if she is starving for normalcy, calm, attention. What will the story of her childhood be? My energy is focused so much on the story of her sister that I haven't thought about her story so much. One day she will write her story and so as her mother I ask myself, what can I do now to co-author it?
I made chocolate chip pancakes for her in the shape of a teddy bear with a chocolate chip face. This is something I can do. It's not the first time I've done cute little mommy-things but it is the first in a long time and it doesn't ever happen on a school morning. Mornings are too hard. I cut up some fruit too. I even wrote a love note and slipped it in her school lunch bag. A beautiful morning with my little girl who is growing up by leaps and bounds, too quickly. We had a beautiful morning and the bitter-sweetness caught in my throat and choked me as she waved goodbye through the yellow bus window. This is as it should be.
Her sister played, staying in just her bathrobe so she didn't have to endure the torture of putting clothes on her inflamed body. It's been a very rough week. Sensory, agitation, emotional. Insomnia has been horrid as she's been unable to fall asleep until 10, 11, or 12 o'clock each night. Hyper, manic, agitated. Last night she cried as we began her math homework and I saw for the first time her brain wasn't working right. She struggled with something she does all the time - something that always comes easy to her.
"WHY is this so hard?! Why am I so agitated?! I don't want to be like this!
None of the other 21 kids in my class have to have needles in their arms for bloodwork!
No one else has this and I don't want to be different!"
Homework was hard and bedtime last night was a challenge but she was asleep by 9:10, likely because she was completely exhausted from the previous nights' sleeplessness. This morning I haven't asked her to do anything but take her lyme herbal water. She's on the Kindle and I'm here doing my therapy writing. I just wanted a peaceful morning, for her sister, for her, and for me. But mostly, for her sister.
My kindergartner and I walked outside to wait for the bus in our front yard. She wore her mixed up outfit that she chose by herself and her self-made ponytail was messily tucked in to her furry hood. It is a sunny, brisk, winter day. Bright blue sky, crisp air, little whispy white puffs sailing by. We laughed about how she could almost stand on top of the foot of snow that had hardened along our driveway. We talked about the mommy-day I would set for her in the coming weeks when just she and I would play hookie from school and go out to lunch. I gave her a bigger hug than usual when the bus pulled up and yelled an extra "I love you" as she rounded the front to get on. She waved as the bus pulled away, making sure to see me. My sweet. I won't be here when she gets home from school and I know that bothers her. It bothers me too. That I am not here for her as I would be without PANS/LYME ruling our world. Thank the universe for Grandma's.
I'm going to make a list of all the things I don't do because of PANS/LYME and then I'm going to start doing them. I'm going to make teddy bear pancakes on school mornings, cut up fresh fruit, talk to my kindergartner as we wait for the bus, and write love notes for lunch boxes. I'm going to make a big list and do everything that I might wish I had done looking back five years from now. If I have to do it in the middle of the night I will. If I can only do it a couple of times a month on days that aren't so hard I will. I will not let this illness take their childhood from me. In 5 years what would I say to myself? "ENJOY every moment you can. FIND them. STEAL them. MAKE them. Don't let them be robbed of you. They are YOUR moments. They are THEIR moments. LIVE them, no matter what."
Got it.
Strength. Love. Hope.
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