Saturday, January 12, 2013

2013 and Here We Are

Tomorrow, it will be exactly 6 years 6 months and 6 days since Lance's breakthrough flare into the PANDAS world - those now famous (in our family) and horrific words - "My ankle is BUGGING me".

Ugh. And what a ride its been.

And how many very special people I have met as a result of Lance's illness - a world full - bursting even - of PANS/PANDAS moms.

PANDAS moms people my world where my friends used to be.

Last week, someone on the PANS/PANDAS facebook page posted something like this - I have to write a book, because I could never make this stuff up.

That is so true, and its just so alienating for many of us PANDAS parents, from the rest of the local human race who seem just so normal, and happy even. Or if they're miserable, they are miserable by choice. Because their child is healthy, so how dare they complain about anything else??

I swear, if my son just is healthy, I will never dare to be unhappy about stupid crap ever again.

The longing for just normal, is so intense. I could never make this stuff up.

To just, leave the house for a few days and go and be somewhere pretty, with fresh air and open skies. The longing.

To just, have a few dollars in my pocket to buy a pair of earrings or go to the (fill in the blank) instead of spending it on appointments and supplements. arggh. The longing.

To go have a martini in a nice place and actually put some makeup on, and go with someone who knows nothing at all about PANDAS, and talk all night about other things!

To make a single plan to do just about anything, in advance. And have it turn out.

To have the energy or even care enough to do one of my favorite things- get up at the crack of dawn and drive the 20 minutes to the ocean to watch the sunrise on the beach piled up in warm cozy blankets with a mug of hot coffee. Last time I got to the ocean? 4 months ago? Five? I think I went twice in all of 2012 - I live 20 minutes MAX from the coast.

To do something to just get over the social isolation and the loneliness of being a single parent, with a PANDAS child, living in a very small town in Northern California on the opposite side of the country from our family.

ouch. ouchie.

OK, its out of my system again, so let's look on the bright side of things.

Lance is, I believe, turning a corner. He has been........ sshhhhhh.....happy and relaxed.....for approximately 48 hours. He denies it - says its because his school basketball team played well yesterday. Ha! He hasn't been able to find a shred of happiness within himself, for any reason at all, for quite a number of months. I have to wonder....

We are exactly one month and 3 days post IVIG number 2.

Is it kicking in?

We shall see.

Best of luck to all of my PANS/PANDAS sisters out there, and PANDAS children everywhere.