I remember a time when I was younger and life hadn't quite kicked my ass so well that the hope of a new year was... hopeful. I'm not referring to the specific night of parties, that never meant much to me, being a profound morning person. I'm not even referring to the typical resolutions, though that is sort of in the same vein. I'm thinking of the idea that a new year brings with it a chance for a fresh start, a turning of the page, some sort of natural revitalization or re-imagining of your current circumstances.
Oh, to be that idealistic still. I look back fondly on that version of myself. Nostalgically. Not without some pity. Not without some (a lot of) jealousy.
Last year we got Moose's Fragile X diagnosis. We also had to move out of our less than 5 year old house for two months while our foundation was completely piered down to the bedrock... and repainted the whole house, and repoured the driveway, and replaced all of the flooring, and all of the sewage lines, and you know, fourty thousand dollars worth of restorations on a house we no longer wanted in a district we wouldn't send our children to school in if they paid us to do so. Did I mention that one of our infants was diagnosed with Fragile X? Yeah... it's much easier to bitch about our stupid house than that.
But, 2011 didn't beat us. In fact, I think we kicked 2011's ass as much as it kicked ours. We got Moose set up with Early Childhood Intervention through Easter Seals. I successfully advocated on his behalf to secure him as much services as any child in the state is able to receive. I got two of his therapists replaced with two wonderful and gifted ladies to round out our team. We put the boys in an amazing school. They accept special needs children as well as typically developing kids. They have all manner of customizations and adaptations, and every child gets and individual learning plan. The guapos' teachers are amazing.
We made the grand tour of just about every kind of pediatric specialist Austin has to offer - genetics, development, cardiologist, neurologist, gastroenterologist, ophthalmologist, and neurosurgeon (more on that momentarily). We also hooked up with three Fragile X research teams. We saw Dr. Hagerman et al at the MIND, and Dr. Jane Roberts at U of South Carolina (LOVE). We also went out to St. Louis for a specialized MRI study that has been expanded from autism research to include fragile x infants. I further worked with a naturopathic doctor, a pediatric chiropractor, and three nutritionists to supplement what western medicine is bringing to the table.
I've started blogging. I connected with national Fragile X resources and communities. I established a private Facebook support group for Fragile X moms. I joined the board of the guapos' school and adopted another family in the school anonymously and provide food for them one week a month. I submitted an abstract to make a parent-oriented presentation at the National Fragile X Conference in Miami this summer.
We also hosted Thanksgiving, over a dozen family dinners, I wrote handwritten notes to my aunt, I stayed up late making adorable and ridiculous bento box lunches for Goose, I planned and styled an enormous first birthday bash for the guapos, and a graceful and casual upscale picknick shower for my soon-to-be sister-in-law. I helped my sister launch a new business, took photos for a close friends wedding, made calendars for the grandparents, kept up with Skyping with the guapos' aunt in FL, and had custom holiday gifts made for each of the therapists and teachers, as well as thoughtful gifts for all of our friends and family. I wrote a shitload of thankyou notes. ...are you getting the sense that I could go on? Yes, that would be correct.
I'm not saying this because I'm looking for some kind of medal. I am not some sort of superwoman - FAR from it. I actually had the audacity (and complete inexcusable rudeness) to say to a well meaning lady at a friendly ladies cocktail party, who casually asked in what I think was an intent to be complimentary fashion, how I manage it all with the comment 'well, in all honesty, I'm lightly medicated and I don't sleep very much'. I am such an asshole sometimes. Poor lady. [I'm both regretful that I reacted as I did and said that, and at the same time acknowledge that this reaction springs from a part of me that rebels against the notion that special needs moms are somehow magical and the generally unpalatable inclination for women to both revere and demonize each other as mothers.]
So if not going for the gold in the poor me olympics, what's my point? My point is that January 2012 blew. Moose had a brain surgery to place an intracranial pressure monitor wire IN HIS BRAIN to try and give us some clarity about whether his enlarged ventricles were just a typical Fragile X brain or if there was actual pressure in his brain. See, his head size has always been large, but it jumped out of range at the 9 month well check. Then an ultrasound through his fontanel showed enlarged ventricles. This lead to an MRI and a CT scan - yes, enlarged ventricles. Then they wanted to do surgery to place a shunt to drain off excesses of cerebrospinal fluid, but no one could agree that there actually was an excess of CSF. The Fragile X community seemed to agree that FXS kids have big ventricles and this was nothing to be alarmed about. The pediatrician and neurologist said don't get a shunt, they are awful and they fail constantly, unless you really need one and then it's a life saver. Awesome. Then we went to St. Louis for the full fledged MRI scans through their study and sure enough, very enlarged ventricles, and 1/2 as much white matter as a typically developing 12 month old, less even than a typical FX kid. More awesome.
So, we placed the ICP monitor wire on Jan 3. And Wednesday morning they had plenty of info to know that there was too much pressure. So on Jan 5th, Moose got a shunt. He got two more burr holes in his skull and a shunt, that will definitely malfunction and fail multiple times over the course of his life and require additional brain surgeries to replace. So awesome.
And then I got pneumonia. Oh yeah, did you know that if you are crazy, and over stressed, and never sleep, and don't eat anymore, and don't take care of yourself because you are too busy having twins and working full time and doing community work and entertaining family and having a special needs child and seeing 4+ doctors or therapists per week for your child and generally trying to take over the world because you're crazy you can give yourself pneumonia? Well, you can.
See, as it turns out, I am still buying into the notion that if I somehow do 'it' right, then things will work out. How many times do I have to learn this lesson? How many times do I have to get the bitch slap for the universe to finally accept that there is no cosmic bank of good fortune in which I am depositing future luck with my current deeds? I mean, if you could manifest something via an act of sheer will, trust me I would have done it by now. Or my mother would have. For real, I can put my Irish on and suffer with dignity through basically anything at this point. That's not a challenge, Universe, that's just truth.
But why?
What true merit is there in the whole suffering with grace and quiet strength thing? I mean, first of all, that's just a facade. I am a total and uninhibited mess swirling just below the surface of this polished and diplomatic presentation. Anyone who is close to me who I've opened up to even a little about what's really going on could tell you that much. Secondly, who is really buying it, and more importantly, why do they matter? My sister has an amazing ability to keep haters out of her head; she literally told a stupid coworker who mocked a picture of her child and later apologized that it was no big deal because they didn't matter. Honestly, she stone cold looked this person in the face and said "I don't care what you think because you don't matter." And she meant it. She didn't say it to be mean, or get retribution for the shitty comment, or to malign the person, she just stated her truth. I wish I had that ability, if not to actually say it, to at least feel that way. I imagine her internal dialogue to be so liberated and uninhibited.
So, add to my list of goals for this year the move towards a more honest and vulnerable representation of my true inner self. I guess a sub-goal will have to be finding my way into a community of people who are ready to accept or at least tolerate this version of me.
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