I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Sunday
Jan132019

Why a PANDAS Parent Didn't Answer Your Email

Today, in the New York Times, an opinion piece, Why I Didn't Answer Your Email, discussed reasons why a parent of neurotypical, healthy children wouldn’t return an email. Her children needed help with homework, a snuggle before bedtime, reminders to clean up after themselves. To conclude, it was a pleasant essay about priorities and the importance of family. But it rubbed me the wrong way because really? You have a normal, healthy family and can't make the time to respond to someone who clearly cares enough to write? Please!  

I asked my fellow mamas, moms of kids with PANDAS, PANS and Lyme about how daily events occurring in the midst of an average day interfered with them answering an email from a friend and this is what I have so far received.

So, here’s an alternative-world essay, pieced together from the voices of many who come together to create a topsy-turvy, true-to-life PANDAS orchestra. In your and my words....

On Monday, when you first wrote, I would have answered your email, except I was spending all day on the phone with the insurance company, trying to get them to pay a claim. And then I had to organize weekly meds and supplements. Not only that, but I needed to support other parents of sick kids in the online support groups.

I would have answered your email after that but I was planning a meal that was safe for my kids. Then, I needed to homeschool because my child is currently unable to attend a full day outside program.

My child is by my side from the moment he wakes to the time he goes to bed—and then, he’s still by my side because he can’t fall asleep without me helping him. Everything I do is interrupted.

But I had resolved to answer your email and would have except that I needed to restrain my child from raging and possibly injuring herself or someone else in the room. Plus I sort of have to micromanage my family to prevent my PANS kid from exploding. Or take care of the arguments that break out in the rest of the family due to the confusion and blame and the general state of chaos in the house.

I was going to answer your email Tuesday except we had a doctor appointment. We got there early, but needed to wait an hour to be seen and I had to run out to get my child to return to the office several times when he wanted to escape. Then, we needed to go to the therapist and then I had to see the chiropractor for myself because every muscle and joint in my body is excruciating to me (I have Lyme also.)

Wednesday, I had every intention of writing to you, but I had a meeting with the educational advocate, prepping for an emergency IEP meeting. I then fielded calls from my insurance about the denial of my appeal for IVIG approval. I arrived home, cooked three separate dinners for family members while trying to keep one of the kids from melting down during the witching hour, ran an Epsom salt bath, got the children ready for bed.

On Thursday, I sat in my car for two hours, after driving for 40 minutes to get to my child’s therapeutic school, trying to get my son to calm down enough so that I could coax him to his classroom. Then, I patched holes in the wall that have been sitting there since his last rage. And took my car to get the shattered window fixed. Scheduled appointments. Took my “typical” child for her appointments and activities. Then dealt with a tutor who lectured me on my “bratty” child while I tried to explain OCD to him.

On Friday, it was too hard for me to write an email as I was watching my child pull her hair out in clumps. I had my hand on the phone, ready to call for the hospital, but the doctor reached me and, as it turns out, a couple of Benadryl and Motrin did the trick this time. Then, I went to the pharmacy to pick up meds, but burst into tears in the parking lot and just sat there, like a fool, crying my eyes out (for I don’t know how many minutes) before wearing my sunglasses while I picked up my prescriptions.

On Saturday, I was actually kid free for a couple of hours! My husband took the kids out and my daughter did great but let it all out when she got home, as usual, and we had rages for the rest of the evening. But totally worth it! So what were my glamorous plans as a PANDAS mom? Well, I spent twenty minutes sewing up a cushion she ripped. Next, I was off to Spackle holes she made in the walls. While the Spackle was drying, I compared supplements online because I actually had enough quiet to think for once instead of randomly clicking ones I know are overpriced on Amazon. Then I tackled some of the chores my kids were supposed to do but have been in refusal mode because if one child can get away with no chores, why should the rest have to do them? And I just wanted a tidy house. Just once, for a few hours, a nice tidy house. But I wasn't answering emails.

It’s Sunday but I won’t be answering emails today. I haven’t slept and feel like a decomposing log. My kid woke me up last night, sleep walking and filled with night terrors. She wouldn’t fall asleep on her own after that so I snuggled her. Once she finally started breathing heavily, my mind wandered, wondering what will become of her if we can’t fix her. I started questioning if we were doing all we could and fretted that we couldn’t see yet another doctor, for we’re out of money. And then I started thinking about the family members who have been doubting and criticizing me. I got up and made coffee to take away my migraine before going to work. And then realized, it was Sunday and I did not have work. But I won't be going back to sleep because I have to break up the disagreement starting between the kids that will lead to a full out rage in a matter of seconds.

So you see, I don’t know when I’ll answer your email. I would have answered your email when I had a slight break, but I was just too tired to think of anything else. It was finally quiet and I wanted to do nothing—finally! Do you understand the words PURE MENTAL EXHAUSTION? It lives here. In my home.

But if you still think I’m important to you, keep emailing. Keep calling. Keep texting. Because I truly do want to answer your email. I do want to have a life outside of this traumatic isolated one. Because you’re important to me and please, please, please, do not give up on me because I am clinging to a lifeline and you just might be part of it.

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