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

 

 

 

Monday
Mar032014

Ramblings of a Grateful Mama

"What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key
Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm going to try with a little help from my friends...." (Beatles)

I'm feeling grateful and it's not even Thanksgiving. I'm singing outa key lately (figuratively. I've still got it when it comes to singing. I think.) I walk around with weird headaches in which I feel like my brains are swimming in my head, as if my head is one large snow globe. My hair hurts constantly as if I've worn my hair up in a ponytail for far too long. And my friends listen. Commiserate. What would I do without my best friends, people in and out of the PANDAS support groups? I'm very lucky.

My children's birthdays are this month. My son will be a teenager--tomorrow! His bar Mitzvah is two months away, planned for warmer weather (hey, he was born in the middle of a snowstorm.) Amazingly, for one who stresses when his dad and I organize his schoolwork, the kid is self-motivated and practicing for the big day. And I? I wonder how to tell everyone to step the back up--don't hug my kid--don't get your germsy, snivelly faces next to his. Nice, huh? But really, that will be one crazy weekend. We're letting him eat anything (i.e. gluten and dairy) so long as it's Kosher. We're letting him into the midst of a crowd. Oy. What will the following week be like? PANDASville?

Got two more exciting months to plan. Sometimes the fun is in the waiting. The writing down of songs to be played. Receiving invitation responses. Going shopping for my daughter's dress with a wonderful friend who asked for the honor of purchasing it for her.

My daughter's birthday is in three weeks. She asked for a sleep over party this year. And because my son isn't raging nightly anymore, we can do it. But then, her guest list grew to 10 girls. From PANDASville to PANICville. I teach ten year old kids all day long. I don't think I can handle a house of ten 10 and 11 year olds all night also. So, we changed the scope of the party and she's happy. Happy! Yay! I aim to please, especially when I feel that so much attention goes to the sicker child sometimes. Mama-guilt is potent. All the same, I felt the need to write on the invitations that a member of the family is immune-deficient; please contact us. In other words, if your kid has a cold, we won't be watching Pitch Perfect. We'll be experiencing Invasion of the Body Snatchers

I adore my kids. When I had the flu a couple of weeks ago, they both ran up and down stairs, making and carting up tea for me. I have to admit--I'm more accustomed to my daughter in that role, but my son took it upon himself as well. Karma. He's giving back. He has so incredibly much potential, I know, and I hope he recovers enough to tap into it. 

Still trying to get him another IVIG. He's so raw, so fragile, in the big wide world that's full of germs. And stress. He succumbs to stress in seconds. Some of that is the Lyme, I know, now. Because I feel it, too. I understand my kid better. But it doesn't mean he gets a free ticket. He's going to have to handle that little bit of extra stress and just keep going. 

We begin homeopathy for my daughter this month. I am now nervous about any medication/remedy as I've personally experienced herxing. Still, to NOT treat active Lyme is worse. Family members have questioned me about Lyme, not yet understanding that neglected Lyme can spiral out of control (pun intended--spiral--spirochete--get it?) and cause heart disease and a lot more. 

On a not-so-funny note, when I was recovering from the flu and had a determined barking cough, I took cough medicine, then the hottest epsom salt/bubble bath ever. It was the first "Calgon, take me away bath" I've ever had (usually I'm bored in the bath and wishing for a hot shower.) I could breathe, my body aches disappeared, I nearly fell asleep. I got out of the tub, wrapped myself in a towel and...woke up when I hit the floor. So, here's the ironic thing: I'd been walking around so brain foggy. Well, I think I knocked some sense into my head! (Or maybe it was the bath that caused me to herx and detox?) Who knows? I am very grateful for my husband being there to peel me off the floor! And I'm fine...truly fine. But I learned my lesson. Avoid anything with codeine. Drink water before a hot bath. Try not to get sick.

On the positive side, epsom salt baths have been helping my son with joint pains--yes! Something that works--and, he's learning that it works. 

So, enough rambling. It's a new year, in a sense, as both my kids were born in the month of March. My godmother was born in March. Spring comes in March. Winter is nearly out the door. My Lyme is here to stay for a while and I'm learning to deal with it, albeit furiously. 

And I'm getting by because of the friends who have been in my life for a long time as well as some friends I've only met via the internet. So perhaps someone or some higher power is looking out for me still.  And perhaps there is more for me to do in this life as well.

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