It's New Year's Eve.
Eighteen years ago, I was in Times Square in New York City with my date, a friend of mine and a friend of his, braving below freezing temperatures to watch the ball--ooh--wow--drop. Seventeen years ago, I was in Madrid, eating 12 grapes from a cup, wearing a tinsel wig and sporting a brand new engagement ring, courtesy of that date-turned-beloved fiance.
Tonight, we stayed home with our kids, played Apples to Apples and weathered a couple of temper tantrums. I cooked homemade French hot chocolate (oh, way too rich) and drank it two hours after taking my last daily doxycycline. I avoided alcohol because I just took Tindamax yesterday. What a sorry thing with Lyme I am!
January of 2015 will mark five years that my son has been very ill. I am happy to report that he's in much better shape today than he was even last year, or the year before that. It's been five years of trauma, post-traumatic stress, diagnoses for him and diagnoses for my daughter and me as well. Surprise, surprise! You've got Lyme!
Pre-kids, I traveled, I sang, I performed in community musical theater productions, bicycled all weekend long, went to movies, restaurants, parties. Everything changed with kids. Pre-PANDAS, we took some vacations, sang and danced at home, bicycled with my husband toting the kids in a trailer, went out for bagels Sunday mornings.
It all changed with illness. The activities, the financial situation, even the bagels.
I changed, too.
I'm no longer fun.
First of all, I'm tired much of the time. I'm not as spontaneous as I once was. I'm very absorbed with dis-ease. I'm stressed, G-d, am I stressed. I try to hide it, though.
My kids claim I talk about PANDAS and Lyme ALL THE TIME. I don't, I swear. Seriously, I don't know what else to talk about, though. And when friends find a tick on someone, it's me they call for advice. Hey, it's not like I can talk about our recent vacation to...oh, that's right. That vacation didn't happen as we had too many medical bills. Oops. I didn't go clothes shopping although I really need something new. Had to buy those supplements off Amazon instead. Hey--Amazon Prime--they ship it out in 2 days.
My son is stable but symptomatic and immune deficient. My daughter is pubescent and Lyme/co-infection ridden. We struggle to make mortgage payments. My dog is happy. It's 2015. Hey, there's no better time for me to find myself again.
So who the heck am I? I'm not the same person I was 17 years ago, and just a quick look in the mirror sure confirms that. I have lines around my eyes when I smile. I have sun spots on my face from those trips in sailboats and from bicycling without sunscreen. I have silver hair competing with my dark brown. The once round cheeks I always hated finally thinned out leaving me looking...older. I'm getting my grandma's hands.
I can't remember any lines from the performances I was in twenty years ago. I can't recall any dance moves. I can't even recall some of the guitar chords from music I learned just five or six years ago. Then again, my memory isn't super-quick as it used to be, although some of that is improving with doxycycline.
My New Year's resolution is to learn how to deal with long-term (here to stay?) stress and to increase flexibility and repair my right hip...through yoga. I took out a beginner DVD from the library and my daughter and I will do it together.
Another resolution is to finally complete that young adult novel I started writing when my son was an infant, the one I put on hold for years. I have so many ideas for stories and I love getting lost in tales that others create. Writing is my destiny.
Another resolution is to plan a vacation, no matter that we can't afford it. The kids are 13 and 11. Disease has already cost us precious childhood years. We must make up for missed experiences. Maybe Washington, DC. The Smithsonian is free.
I would like to say that I'll start singing again. This was the first year I didn't bring my guitar to my classroom; my back hurt too much to carry it in its case. It takes a certain amount of energy and happiness to sing and as much as I love teaching, I have very little energy and patience left over when I come home. The strings hurt my now-soft fingers. I have to toughen up again.
My son wants to bike NYC in April. I don't know if I can handle 45 or 50 miles that early in the season unless March is exceptionally mild and I train on weekends. It also depends upon how many spoons I've got. But I long to do this with him, as long as he doesn't leave me in the dust.
If I could do anything, if money and health were no object, I would travel. I would take dance lessons and horseback riding lessons. I would learn another language. I would write books and see them in hard cover. I would plan vacations with family and friends. I would have weekends in the city and see Broadway shows. I'd have weeks by the beach in a tiny cottage all by myself. I would find someone who loves to play piano just so I could sing show tunes again. I'd have a second honeymoon with my husband.
As parents of chronically ill children, we forget how to dream, how to think of ourselves. We forget that there's so much more to life when our life narrows in to focus on a depressed or raging child. Our life becomes that hole in the wall, the curse word written on the toy, the threat of self-injury, the cognitive decline.
At this time last year, my husband and I were speaking with attorneys. My world was only that wide. A year ago, I could not even dream that I'd be in a calmer place today.
I am changed by all I've been through. Doing for just myself will never be an option, as I not only have my own children to take care of, but all those others whose parents need help navigating the path through PANDAS, Bartonella, Borrelia and more. I've lost a part of myself, but I've also become stronger and more compassionate. I've met some of the finest people in these family support groups. I've met incredible, courageous doctors. I've learned about a world I didn't know existed. I'm forever changed. Damaged, maybe. But strong enough to begin the search for me again.