It's NaCaGiMo, Folks! Day 10

I've been veering all over the place -- despair to anxiety to "power to the people" enthusiasm and resolve and then back. In keeping with NaCaGiMo, though, I'm going to tell you that I feel the most panic when I think about what might (and probably will) happen to those of us dependent on disability-related federal subsidies. I'm talking the Affordable Care Act and it's dismantling, what it means to Sophie and her "pre-existing condition." The amount of stress -- both emotional and financial -- that our family and millions of others had before the ACA was PTSD-inducing, and it looks like we're in for another round of it. I'm talking SSI and IHSS, and the various services that many families of children with special healthcare needs and disabilities depend upon for not just their quality of life but also their existence. We had actually made progress the last eight years, and now it looks like it'll be ripped away, systematically. I got a grim reminder of how it happens yesterday as a job I had -- acting as a peer reviewer for a federal grant -- was suspended late in the afternoon. I needed that job, and I'm certain that those who wrote the grant proposals needed that money. It's started already, and if the past is any indication (the 8 years under Bush), anything related to caregiving and the disabled is the first to go on the chopping block. One of the first things that Obama did when he took office was to lift the ban on federal funds for embryonic stem cell research. At the time I was working on a national collaborative team trying to improve the quality of healthcare for children with special healthcare needs (with special effort toward closing the equality gap for the disadvantaged), and the relief was palpable, not just for the medical professionals but also for families who have children with genetic conditions and serious life-threatening illnesses. I'm thinking of the prospect of a Chris Christie in a cabinet position, a man whose draconian stance on medical marijuana could actually kill children and adults who need it. During his short presidential campaign, he vowed to go after those states that had legalized marijuana and turn the clock back. 

I'm going to be honest and admit to my fear, even as I don't despair. It's a matter of principle, I think -- the fact that the Republican party, a majority of white people, INCLUDING WOMEN, put this creep of a man into office and acquiesced to the assholes that will surround and advise him. We need to all WAKE UP and fight back.

It's NaFaCaMo, Folks! Day Three

Sophie the Phoenix and her driver, The Pile of Ashes

TEN RANDOM REASONS HOW I PERSONALLY "DO" AND HAVE "DONE" IT

1. LOVE Contrary to what some believe (and probably don't even realize), most of us love our children with disabilities as much as we love our children without them. This means we are committed to not just their welfare, but also to our responsibilities as parents. They are still our perfect babies. This is why when people say they couldn't do what we do, we roll our eyes and growl.
2. GRATITUDE I am grateful that Sophie has a father who loves her, has always loved her and been a wonderful caregiver to her. I am grateful for my sons Henry and Oliver, for the joy they've given me, for the perspective they've given me, for the babies they were and the young men they are. And they're pretty damn perfect.
3. GALLOWS HUMOR Even though I've made a groove in the shower with my forehead where it fits perfectly and from which is etched a narrow channel where tears have mixed with water that pool around my feet, salting them, I generally hit a point where everything -- and I mean everything is absurd. My two sons seem to have inherited this quality (is it a quality or just a characteristic?) as well which I think means the universe is abundant. One of my fondest memories is of Little Oliver, aged six or so, lying on the floor trying to pull a cup out from under a piece of furniture in the kitchen where it was thrown by a seizing Sophie. Who lives like this? he muttered. What kind of life is this? There are those who believe everything is a blessing and has a meaning, ordained by God. There are those who despair and give up. And then there's the rest of us, and we roll around and laugh.
4. MONEY Yes, you've read that right. I'm perfectly aware that money doesn't make for happy or give us a cure (lord knows I've raised so much money for epilepsy research and we all know things seem as dark as ever). What money does, though, is make things easier. You get better healthcare when you have money. My parents have supplemented me with money for as long as Sophie has been alive. I use the money to pay for caregivers or for any expenses related to Sophie's care. I also get money from a program called In Home Supportive Services. Basically, I am paid by the state of California to keep Sophie at home and out of an institution. I'm paid under $9.00 an hour which isn't exactly what I'd probably have made if I'd had the career that I originally planned on having, but the money goes toward the near $20.00 an hour I pay Sophie's helper. Money doesn't just make things easier. It has saved my sanity and my family's life.
5. FELLOW CAREGIVERS I would honestly have died inside if I didn't have my amazing community of fellow caregivers to share the road with me. I'm hard put to write anything but cliche about these men and women who offer support, camaraderie, mutual senses of humor, similar horrendous and wondrous caregiving experiences and always love. The beautiful world of the internets has made this possible, and I'm also hard put to imagine how in the hell I did it back in the dark days of the last century when there was no such thing, when I tossed out my copy of What to Expect The First Year. Oh, yeah. I remember how I did it. I met Jody and Susan and Lauren and Gigi and talked to Eleanor on the phone (literally the only person I knew who had a child with a disability). 
6. MY REGULAR LIFE FEMALE FRIENDS I know everyone has their burdens, but there ain't nothing like having a child who is severely disabled. That being said, my friends who have not been uniquely blessed and cursed have taken me out of that very small world and supported me. We drink and laugh and go out to lunch and to see movies and complain about our teenagers. I have some online relationships with fellow writers and bloggers who sustain me as well. It's a beautiful world.
7. MY PROGRESSIVE POLITICS I have a relative who once bragged to me that despite his unemployment and economic duress, he never accepted or expected help from the government. We all need one another, and I'm telling you that no family member or even neighbor is going to help me out in the way that I need help. I'm talking about changing dirty diapers for decades, lifting my daughter into and out of a wheelchair and a car, buying her drugs to keep her alive that cost thousands of dollars a month and providing her with a quality of life that is stimulating and has a modicum of beauty. I need help. Show me a conservative politician with truly progressive values who claims to honor the sanctity of life and supports policies that help the profoundly vulnerable in our country. 
8. MINDFULNESS MEDITATION I took the basic six-week mindfulness meditation for stress reduction class when Henry was about two months old and Sophie went on a two year screaming jag. It saved my sanity. I might go days and even weeks without sitting (the practice of meditating), but I have honestly tried to live mindfully ever since. That means recognizing each moment that comes, the bodily sensations it evokes and not judging them. 
9. LITERATURE, POETRY, ART AND BIRD PHOTOGRAPHY I'd be dead in my mind if I didn't surround myself with books and poetry and art and those who love them. My writer friends are probably my closest friends because we know that our salvation is our suffering and what we create from it. Oh, and then there's the bird photographer.
10. SEX Just kidding. Maybe.

It's NaFaCaMo, Folks!

I'm actually a day late to inaugurate the National Family Caregivers Month series of blog posts that I plan on writing in November. My friend and fellow Family Caregiver, Sandra, likes to call it NaFaCaMo as a sort of twisted take on NaNoWriMo, when writers the world over write a novel over the thirty days of November. There might be some NaNoWriMo folks out there who are also celebrating NaFaCaMo, but let's call a spade a spade and admit that if you are doing both (writing a novel and being a family caregiver) -- well -- we don't believe you. Despite the fact that President Obama wrote a very nice proclamation for this significant month (you can read it here), and I'm basically a sucker for everything that man does, including being recognized as a full-time caregiver of a disabled family member, my interest on the old blog is to tell it like it is and is means uniquely slanted (biased) toward the dark-humored, the rueful, the cut through the inspirational crap about being a full-time caregiver.

In the dark days of the last century when the internets were just a kernel of rice in the brain of Al Gore, my friend Jody, whom I had met in a mothers' support group at New York Hospital in that other big shitty, turned me on to a newsletter for mothers of children with significant disabilities. It was called MOH, or Mothers From Hell, and it was a perfect antidote to the treacly Mothers From Holland that was de rigueur at the time.  

Don't get me wrong. There are a myriad of blessings that come with being a full-time caregiver, and I've written literally hundreds if not thousands of posts here that testify to what I say is the honor of caring for someone who is entirely dependent on me.  I can tell you about resilience and virtue and strength and a community of human beings that are, without doubt,  the most courageous people on the planet. A designated NaFaCaMo calls for some levity, though, because -- well -- just because. I've just come out of a particularly grueling couple of months with Sophie in a sort of perpetual crisis that culminated in a fairly useless hospital stay that cost nearly $70,000 (so far, and I'm not joking). It took her approximately three weeks to recover from that stay and whatever was going on before she was admitted -- three weeks of barely being able to walk, of losing weight, of near-constant seizures in the early hours before dawn, among other atrocities. I'm thrilled to say here that she's turned a corner and is back in school with a spring in her step. It seems that the combination of increased Onfi and a new version of CBD and THC is doing something good, at least for now. I don't want to jinx it, though, so let's not dwell on this perhaps temporary hiatus other than to give thanks. Thanks!

It's taking me longer and longer to recover from these downturns, though, and can I tell you that it's not really Sophie -- or her disabilities -- that takes its toll. It's what we call the systems of care -- or lack thereof -- and the culture in general that makes our lives so difficult, when they're difficult. 

Hopefully, I can touch on some of these issues over the next month. I'd also love for you, dear Readers, and especially you dear Caregiver Readers, to tell me your stories. I want to know what your personal record is for changing wet bedsheets in the middle of the night or the greatest number of calls you've made to your insurance company about a particular charge. I'd love to know what outfits you've worn to IEPs (I myself wear a leotard and do a tightrope walking act) or your methods of dealing with constipation. How about doctors who refuse to acknowledge the efficacy of CBD or who downplay side effects of anticonvulsants? How about commercials for pharmaceuticals and making a case for medical necessity when you have to renew prescriptions at the drug store? What's the longest you've gone without a full night's sleep -- months? Days? Years? How about the siblings? How resilient are they? Did they learn how to buckle themselves into a five-point harness before they knew how to walk? How do you deal with the phrases of the well-intended -- the I don't know how you do its? the God knew what he was doing when He gave you [insert the name of your child], the God never gives you more than you can handle, or my personal favorite There's a reason for everything, and your daughter must be teaching you so much.

Let's hear about the marriages and the divorces -- hell, let's hear about the affairs. You spend a lot of time at home! There are no judgements here during NaFaCaMo! If you're a woman have you turned your home into a convent or cloister? 

And, here's the golden question that I know you've been asked at least two million times:

Are you TAKING CARE OF YOURSELF?