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

 

 

 

Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy

when skies are grey

You'll never know dear,

how much I love you

please don't take

my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Sunday
Dec132015

It's a Small World After....

It's a small world after PANDAS/PANS and Lyme smack into the middle of your shoulder blades and then stab you in the gut. You learn who your best friends and family members are, acquaintances fall by the wayside and you make new friends through support groups. 

For a few years, around holiday time, my little family scheduled picture-taking, only to postpone when our child with PANDAS wasn't well. Had we photographed the kids at the time, you might have surmised they were starring in the worldwide wrestling arena. It helps to have a husband who is a photographer. Then again, if we'd hired an outside professional, maybe the kids would have kept it together for the photo session. As it was, we often had to bribe them. My husband prided himself on quirky creative cards that people would hesitate to throw away when February rolled around.

I loved our kitchen in December and January. Every card we received would be taped to one of our ancient wooden kitchen cabinets. I'd be surrounded by smiling faces and wishes for joy.

Last year, however, the PANDAS, etc. worsened. My husband spent his creative energy soothing a kid who was herxing from Bartonella medication. Hence, no pictures were taken, no cards sent.

I suppose I could have created a card detailing the effects of PANDAS and Lyme on a family. Or a card with simply the words: PANSLife.com. Not that I had the energy to send them out anyway. Lyme had sent me reeling.

But the cards came in and lined the outside of my kitchen cabinets, lifting my mood. I loved seeing the faces of children I had known since they were small. Although many of these people were friends from the past, many had no idea that life for us had changed dramatically. I don't include letters with my cards, documenting the year, telling about everyone's life.

Can you imagine if I did that? "2015 was a horrendous year. My son, who had started out in school (yes, he was BACK to school after being homebound for two years,) made Honor Roll, joined the track team and the Student Council. Despite all this, his co-infections caught up to him. As you may or may not know, he has trouble detoxing--he has two MTHFR mutations--and the 23andMe confirmed this--so we have never fully treated the Bartonella and Babesia.... My daughter, on the other hand, experienced an onrush of Lyme symptoms, while I battled fatigue and joint pain...." 

Yeah, right. Like anyone wants to know. I may as well send out a letter written in a foreign language. And none of this is new. It's been the same story for about six years now. Give or take a diagnosis or two.

It's a new holiday season and thus far we've received only a couple of cards. One from my cousin, who truly cares. Apparently because we stopped sending cards, people have dropped us from their mailing list. Perhaps they think we dropped them from ours. They don't realize that they're still in our hearts, our thoughts. We haven't kept in touch except for holiday cards; years of dealing with a chronic illness will do that to a family. But how would they know? We don't see many people, don't make too many plans. Come to think of it, we're not invited to many parties anymore. Not after cancelling a few at the last minute because of a flaring child who couldn't be left alone or with a babysitter.

Then again, I'm not very good at asking others for help. I might tell people about Lyme Disease, but I rarely ask someone to take care of a child or to drive. And I can't ask anyone to help with meals--that simply is not done (plus, we're Kosher, often organic, gluten free and I'm now dairy, oat, agave, pecan, coffee and pepper-free as well.) We're 'Complicated.'

So, yes, my world has become smaller. My good friends, the ones who have stuck around, have become diamonds. My inlaws, my dad and stepmother have all stood by us. We appreciate everyone we have in our corner. I acknowledge that my own Lyme and my PTSD over the family's ailments may have created a wedge between "ordinary folks" and me. When I speak with a person who has a regular life, I seldom have much to say that isn't centered around PANDAS and Lyme. My good friends put up with me, encourage me, and then I can go on and laugh, enjoy myself, be myself, celebrate being with them. They understand that there's an underlying sadness that pervades our lives, our days. They also can help us rise above that. As can parents in the online support groups, who with a word or two, can convey so much love and acceptance. But to share the events that unfold at home with people who do not deal with Lyme and PANDAS? I don't even blog about the specifics. People would judge.

While my world within our town, our local community has shrunk, my outside world has expanded. I am in touch with wonderful people in all different states and countries. The Lyme Disease Challenge has put many of us in touch with people from all over the world, because Lyme is...well, it's everywhere. And it continues to spread. And where there's Lyme, there is going to be some PANS.

I guess I'm saving money on stamps, saving time addressing envelopes. I do miss having a picture of my two children, though, and we haven't any good ones of them together this year. Despite the hardships, there are memories I want to keep. There are friends I treasure also. Because they reach out, keeping us from isolation, they remain in our world. And when times are better, I try to reach out and remain in theirs.

 

"It's a world of laughter, a world of tears
It's a world of hopes and a world of fears
There's so much that we share that it's time we're aware
It's a small world after all."


Read more:  Disney - It's A Small World Lyrics | MetroLyrics 

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