Never kept a personal blog before. Never had a website until this summer. So, every time I write, it's a first. And this is the first time I'm making a public list of things for which I am grateful. It's that time of year.
Well, actually, it's kinda good to do this every day. Just make a mental or written list of 10 things for which you're grateful. Helps to balance out the negative. Do I follow this advice? Well, I have, at times. But lately, not as much. So, here goes. In reverse order. Not that one thing is necessarily more important than the next, but let's go for it anyway.
10) Life. Hey, every day we're alive is every day that we're hanging out here on planet Earth. I'm not in Israel right now, hiding out in a bomb shelter. Boy, that would majorly stress out a PANDAS kid. I'm in a house, with heat and hot water, electricity, on a sunny day with the sounds of kids's voices (one of my own included) outside. I might not like the number of my age, but I don't look that number yet, thanks go Grandma Stella's genes. And not only the good die young. Bad die young. Good can live to be 100.
9) Song. I carry a song in my heart. Sometimes, it's "Killing Me Softly with His Song." (Roberta Flack.) My boy. And sometimes it's "We will Rock You," (Queen) which my daughter drummed to last night in a drummer's show. My guitar sits in the corner of my room, ready to come into school with me this week. I always have a tune in my mind. It travels with me.
8) Patience. Granted, I struggle with this but as I get older, I find I have more. When my son first got sick, I promised him that we'd get him better. Never did I think that three years later, we'd still be trying to fulfill that promise. I no longer believe that we can fix him in a day, a week, a month. Likewise, I feel that I have more patience for my own kids and the kids I teach. Usually. And G-d grant me more patience for the parents who have healthy children who complain about inane things like a faucet dripping or a kid scraping a knee. You have no idea. And may you remain ignorant as to the pain that PANS parents and children undergo.
7) Creativity. I'm not thrilled that I haven't really touched my writing lately, that I'm not ready to publish that book I've been working on (and off and on and off) for years now. That I don't play guitar or sing like I used to. BUT, my creativity does come out in the classroom. My best lessons are spur of the moment, when ideas just fly into my head, and I tuck the pre-planned lesson away and just go with the whims and curiosity of the class. It's magic in the classroom.
6) Friendship. I'm so fortunate to have some of the most fantastic friends in the world. A godmother who always comes to visit during my son's IVIGs, gets mad if I try to pay for anything and gives the best hugs. A friend who asks ME to forgive HER for not visiting us this time because she's involved in setting up her apartment and calling FEMA after her house was ruined in the hurricane. And I wish I could be there more for her. Friends who call suddenly and take my daughter our for a fun afternoon. Friends who have my son over to play. Friends who find a way to help my husband and me go out to dinner. Friends on Facebook whom I've never met in person but who live parallel lives--these people have become my mentors, my cheerleaders, my sisters. PANDARANTS--you know who you are.
5) Knowledge. Last August, I knew nothing about PANDAS except that I thought that my son might have it, based on my realizing that he had ADHD symptoms, OCD (when I learned that not everyone with OCD has perfectly kept bedrooms,) and of course, his tics. I remember meeting with a couple of parents and hearing about IVIGs, activated charcoal and die-off. I was like, "WHAT????"
Now I can talk circles around those topics and more, yet there is ever-so-much-more to learn. I never knew a thing about Lyme, and when my son was diagnosed with Lyme as well, I went into shock over the amount of information and then over the fact that infectious disease doctors often don't recognize chronic Lyme. I have since learned about friends who have Lyme that has never quite gone away. And through keeping a FB site and reposting information onto my private wall, I have heard from other friends about their own challenges.
4) Empowerment. I am not a victim. Yes, my son has these horrible medical diseases. Yes, it puts strain on our finances and marriage. Yes, it negatively affects my younger child. But I am stronger than ever before. I know more people than I did one year ago. I have found top-notch, intelligent doctors who question the "system." I read constantly to learn more, as most parents of children who have been diagnosed with PANDAS tend to do. I take strength from my work (teaching 5th grade.) I don't worry about a messy house anymore. I am more than that. I know that I'm doing everything possible for my family.
3) Escape. We're struggling financially now, as my husband, who started his own business around the time our son got sick, has spent a lot of time caring for him. So we don't go on vacations. We don't go out to dinner (not that we can leave our kids at night, when the witching hour lasts for four hours.) I don't spend much time or money doing retail therapy. I'm not really into television (see #1 though.) For me, it's books. I love reading. I always have to have a book. I can travel to another land, another time, another body, another life. And the story can end happily ever after. Shades of escapism.
2) Love. Doggy doo. My moppy Kato, who has to jump into my lap (all 40 pounds of him) when I come downstairs in the morning, who would slobber all over my face if I let him. My cuddly boy who has to ask me every night, "Mommy, do you like me? Do you love me?" My daughter who thinks I'm awesome (age 9 is great!) My husband who, with my daughter, made a humungous three-layer chocolate mouse cake with chocolate ganache for Mother's Day this year. My inlaws, who have not always understood what we're going through but have tried to be there for us anyway (and have succeeded.) My dad and his wife, who follow our lives from long distance and then help out when they come back our way.
1) Humor. Laughter. Watching Big Bang Theory with my husband. Or 2 1/2 Men (we finally got around to watching our first episode a few weeks ago.) Sharing a chuckle. Laughing at fart jokes the kids are making. In all honesty, my husband is often the one who starts it. Lately, they came up with some comparison between farts and football positions (i.e. tight end.) Don't ask--I'm the one doing the eye-rolling usually. But inside, I still think it's funny. Kinda. Hey, I can just return to my book when it gets to be too much.
Thank you to all the people who have supported us in any form this year--from making a donation to the PANDAS Resource Center in our name, to giving support or info on a PANDAS or Lyme site, to physically being there for us, to listening to me rant or cry. Those who helped us find laughter again. Those who bought t-shirts. Those who read my postings! Those who have their own struggles yet make time and room for someone else. Hugs!