Sophie's Birthday Eve Reflections

Sophie will be 23 years old tomorrow, March 8th. Everyone says, I can't believe it! or they say, My God, how time flies! It's hard to believe that she's 23 years old! Sophie would if she could and I will tell you that it's not hard for us to believe that she's 23 years old, that we feel every second of those 23 years, that they have not flown by even for one moment, that she was a tiny baby and I her 31-year old mother in another lifetime, eons and eons ago.

We are filled up with 23 years, exhausted and exhilarated and indomitable.

Richard Engel, the chief foreign correspondent of NBC News has a very young son with Rett Syndrome. Rett is one of the many disorders that we ruled out as a diagnosis for Sophie, back in the early days when the powers that be had discovered a gene marker for it. Sophie tested negative for that particular mutation even as she had many of the clinical characteristics of Rett Syndrome. Since those days, they have found other mutations related to Rett Syndrome, but I admit to being lazy about testing Sophie for them. It has something to do with my ambivalence about the medical community, about what it means to fix and to cure. That's a post for another day.

Mr. Engel has written a beautiful piece about his experience fathering this special child and persuasively argues that his experience as a war correspondent and knowledge of PTSD parallels that of this new parenting journey. You can read it here.

On the eve of Sophie's 23rd birthday, I confess to reading the article with a bit of an eye roll -- well, not exactly an eye roll but more a sigh. I imagine that fellow veterans (war imagery always irritates me, but it's appropriate here) will understand. What struck me, on the eve of Sophie's 23rd birthday, is how innocent and heart-ripping Mr. Engel's yearnings and aspirations are and how dim his understanding of the journey ahead. That is as it should be. I don't mean just the trials and struggles, the cycles of grief and loss and anger and acceptance but rather the knowledge that comes from those cycles, and that contrary to what the psychologists tell you, they repeat themselves over and over and over. Despite the beauty of his prose and the exquisite sensitivity and vulnerability he reveals, he has no idea that he might one day, like we veterans, realize that his love for his son has absolutely nothing to do with curing him.

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.

How We Do It, Part LV

I drove up Venice Boulevard today, back from a doctor's appointment on the west side, no traffic, blue skies, hot dry sun, the silk floss trees dropping their pink petals. This is what I thought. Sophie had a huge seizure this morning, a big one, related, I'm certain, to the fact that we've cut her drug in half. I rubbed some THC on her gums during the seizure, and she recovered fairly quickly. I don't know what's what, but what I do know is that I've lost all trust, or maybe not all but most trust. You must have figured that out all ready.  Trust in what if not what's what? I don't remember exactly when I became unmoored -- was it when that doctor from New York City told me that I'd had a good idea when I suggested that the three drugs my baby was on were perhaps interacting with one another? Was it that moment when he hmmmmed on the phone and I realized the gig was up? Is it because I'm a woman, formerly a girl who was taught to please, to defer to authority, to pipe down, shut your mouth, too opinionated, your head in the clouds?Just the other day, I was told, Who told you that you're special? What makes you think that? with all the implication that I'm not, which I know, at last, to the questioner. But this -- this trust -- lost -- the sense of trust lost, the yearning to hand it all over (not let go, let god), the impossible decision-making, the plunges, the leaps. The silk floss tree blossoms are like windmills on Venice Blvd, spinning and falling. The trunks are spiked, so sharp that we shaved them from the tree in the backyard when the children were young.  My windshield -- wind shield -- covered with flowers that fall, whole. She seemed confused today, her brow furrowed, her eyes too often swiveled to the right, a jitter, a blip. I imagine taking Sophie under my arm and running, running to China, away. She's still that baby, under my arm, so many trips to China. Don't get me wrong. I'm not going anywhere but there in my head. These seizures, those, this loss, that baby, trust gone -- they are compressed in time, over and over, just mused over on Venice Boulevard while I drive.