How We Do It

When I feed Sophie oatmeal, I put one hand on her forehead and with the other coax a spoonful into her mouth. Then I put a finger on her chin and will her to keep her mouth closed and chew. Then I quickly scoop up the drool and any food that isn't chewed up and put it back in her mouth. I keep my hand on her forehead the whole time so that she doesn't drop her chin and let it all fall out. This routine is the same at lunch and dinner and I am patient on the outside, mostly, but dying on the inside. Her physical abilities are changed, too, but I don't feel like going into those here.

Do you want me honest or do you want me inventive?

I only have theories as to what's going on and actually don't welcome yours unless you've been helping me out for years or otherwise get it. I am taking the necessary steps to make sure that this is not the new normal. 

Yet, Sophie is incredibly alert and responsive and is having very few to no seizures and for that I am grateful.

I remember talking to my friend Erika years ago when she was struggling intensely with her daughter's cyclical vomiting and simultaneous seizures. Her daughter has a rare genetic defect that causes her countless issues, and Erika was in the full throes of it. I'm talking vomit and suctioning and seizures and more vomit and no sleep and no washing machine in the apartment to wash the soiled linens. No nursing, either, and a dear husband who had to get up early in the morning and go to work. It sounded, frankly, completely insane, yet she was living it and laughing with me over the insanity.

For a while, my friend Jody repeated this to herself and to me, "it's impossible," and I felt released from any burden I might be carrying.

I've walked into Sophie's room numerous times and found her seizing, sometimes safely on the bed and other times splayed in various positions on the floor. One time her head lay in a soft box filled with toys, another time she was on her knees, folded over on the mattress, her arms stiff, as if she were crucified. Honestly. Inventively, she was a prostrate supplicant, a postulant, perhaps (I was once a Catholic and was dutifully obsessed with these things). If you saw this stuff, you would, I imagine, cry or panic and certainly express that you couldn't do what I do. I suppose the rush of adrenaline gets you through, or maybe it's dissociation that comes, ironically, in like a flood. It's only occasionally that I think how not normal it all is, how fucked up. And the fuckery isn't just the seizures and suffering. It's the living it.

Do you want me honest or do you want me inventive?

Imagine a scene in a movie where someone has suffered heartbreak or someone has died, and the streets are filled with women in dark dresses, tearing out their hair as they walk down the street together, always together, and wail. They will eventually stop and eat together somewhere, certainly bread and maybe cheese. They'll brush one another's hair and lie curled up on beds with white sheets, their fingers trailing down backs lightly and laugh, always laugh.

Books & Bakes Re-Cap

Chilled Sour Cherry Soup

Last night a group met at my house to discuss Magda Szabo's novel The Door and eat Hungarian food prepared by my old friend Erika. I think we all agreed that the book was wonderful and the meal outstanding. The novel is about the complicated relationship between a peasant woman and an intellectual writer, taking place in the sixties in communist Hungary. Erika, a native Hungarian, informed us of the novel's distinct "Hungarian-ness," but each of us found something to relate to whether it was female friendship, the role of caretaker and receiver, the complexities of mother/daughter relationships and even that of writing and material. The book was written in the 1980s and only recently translated into English, but The New York Times included it on their list of the Ten Best Books of 2015. It's a short book, but I think most of us at Books & Bakes would recommend it.

Now, the menu. Good Lord, ya'll. Not only is Erika a beautiful writer, a Caretaker Extraordinaire of a beautiful little girl with severe disabilities, but damn. She can also cook. I milled around the kitchen a bit before acquiescing entirely to her skill and concentration preparing authentic Hungarian dishes. I won't divulge that the night before I had attempted to make a traditional Hungarian pastry that I had to throw in the garbage and left me in tears. I thought I'd lost my touch, but Erika assured me that the recipe I was using was at fault. Perhaps that's true, but I think that I have too many proverbial frying pans on the fire and have just lost my mind. I guess I just divulged that.

Here's the menu:

Mulled Wine forralt bor
Cheese Biscuits Pogacsa

Chilled Sour Cherry Soup Meggyleves
Meat-filled Crepes Hortobagyi husos palacsinta
Mushroom-filled Crepes
Chicken Paprikash Paprikas csirke
Mushroom Paprikash Gombaporkolt
Hungarian Cucumber Salad Uborkasalata
Dumplings Galuska
Hungarian Pickles

Assorted Traditional Hungarian Pastries

Highway Thoughts on Help and Stress

This morning I drove west to my annual OB/GYN appointment and blew my news blackout to listen to Morning Edition on NPR. They did a segment on stress and the effects of stress, how most stress reported has to do with chronic health issues -- people reporting that they themselves are ill or someone in their family is ill or needs help because of disability. I don't feel like looking up the link, but I'm sure you can google it on the interwebs and listen yourself, if you're so inclined. I nodded my head at all of it, of course, but was most struck by a statement about Americans' unique hesitancy to ask for help. Our culture is, of course, one of rugged individualism and self-sufficiency which is courageous and optimistic at best and selfish, unrealistic and downright sociopathic at worst.

As I crept westward on the 10, I mulled over this and was reminded of the video I made with Erika and Phil several years ago about extreme parenting. New readers here might not have seen this video, but in a nutshell, I asked people who care for children with disabilities or those who have lost children to disease to take a photo of themselves with a poster stating what they wish they could say to their younger selves on the day of their child's diagnosis. While I wish there had been more diversity represented in the finished video (I used what I got!), the responses were rich and varied. By far, though, the most common advice parents had for their younger selves was "Ask for help," and "Accept help." I think there's a little of that cultural thing going on here, for sure, and I also think there's some control stuff -- when your world is turned upside down, and you realize that we actually have very little control over our children's lives, you tend to control what you can, and at least for me, I might have thought (unconsciously) that what I could control, I'd do myself. Initially, doing it myself made me feel empowered, in control, in charge and confident. After a while, though, at least for me, I was exhausted, burnt out and incredulous that this caregiving was going to be forever. I won't even talk about what the effects on friendships, on relationships with family and even marriage have been because -- well -- that's no blog post. Despite the insanity, I rarely did ask for help or even accept it when offered. I'm being utterly honest here when I say that this might be one of my only few real regrets of my early years with Sophie (pushing more forcefully for full inclusion in school being the other one).

Just some thoughts as I ambled down the highway toward the paper gown that ties in the front and the speculum.

That being said, I thought I'd post the video here again so that you can watch it and perhaps share it, particularly with those who might be just now entering this strange, lonely, often hellish and overall wondrous world of extreme parenting.

Contrived Scenes - Labor Day

 The Husband and I drove with our progeny down the highway to Orange County, where we visited our dear friends Erika, Phil and Izzy. Phil is the genius who put together the slides for the Extreme Parenting Video Project (that has now had over 4,000 hits thanks to all of you wonderful bloggers who posted it on your blogs!). Erika is the incomparable mother, holding on to her flippin' hat in the video, who can also cook some delicious Hungarian delicacies. Izzy is the hummingbird, their delightful daughter who smiles charmingly at my sons as she kicks her legs and giggles, completely belying the fact that a couple of months ago, she lay in an induced coma fighting for an intact brain and her life.

Here's a shot of what it looks like in Phil, Erika and Izzy's parts:

Here's another one:

Here's the contrived scene from the title. Something about my sons in this little hideaway makes me want to mock them. But I won't:

The children at the top of this grassy hill are sitting on cubes of ice and sliding down the hill. They are contriving to sled (is that grammatically correct?). Only in Southern Cal would you contrive to go sledding when the glorious Pacific crashes onto the sandy beach below, tanned and muscled surfers everywhere you look and bikinied damsels frolicking in end-of-summer waves.

Here's another contrived scene - disregard the blurry photo and Sophie's glittery eyes. I really only made them sit there, together, to get a shot of the fantastic chartreuse couch that Phil picked out. I'm still marveling over that. I mean, The Husband can cook, but pick out a gorgeous, completely hip, chartreuse couch? I had a contrived vision in my head of my beautiful children arrayed on that couch. The colors would pop and it would be worthy of a design blog. Never mind that I only had my Android phone.

We had the most wonderful, relaxing day with our friends and reluctantly left in the late afternoon to drive back to Los Angeles.  It's the last day of summer as school starts for my boys Tuesday morning. Oliver just went to bed in what I think are contrived tears as he earlier stated that he was excited to go back to school.

I could never contrive that light and that sky, the road to our little house just there, on the left, nor my gratitude for all of it.

Izzy and Erika

I drove about an hour south today from Los Angeles to visit my dear friend Erika and her beautiful little girl Izzy who has been hospitalized for over two weeks. Izzy has Angelman Syndrome and was in status (seizures not stopping) so had to be put into a chemical-induced coma to allow her brain to rest. As if that's not enough to deal with, when they weaned her from the coma, she got into a little trouble with her breathing and adjusting to life outside of intubation, so she's still in the PICU, struggling. The amazing thing about Erika is that despite a hellish few weeks, she not only looks adorable but continues to laugh uproariously at all the absurdities of this life -- like the sign above that welcomes one to Fountain Valley, a city basically off a huge Southland highway that's one of the plainest and most nondescript places you could ever imagine. That motto A Nice Place to Live was written for the likes of Erika and me who survive this bizarre world we live in by reveling in the absurdity quite literally. When Phil, Erika's very adorable husband arrived, I took Erika away from the little hospital to a nearby strip mall where we enjoyed delicious Greek food and exchanged horror stories. Erika shared a bit of her reading with me (dark tales of dissociation and split personality), I told her about my own dissociation during a visit to a brain surgeon years earlier, and we agreed that hard-core brain surgery for our girls was a line we'd probably never cross. We were actually shrieking together at one point, over the voices of the Vietnamese who have evidently settled in vast numbers in Fountain Valley because fountains are blessed? While my own horror stories pale in comparison to Erika's, the camaraderie between us is something that I just feel profoundly blessed by and another reason why these internets are just a powerful place to connect to others.

I'm sending all my love and healing thoughts to little Miss Izzy, who, while currently hospitalized in a nice place to live, must get better soon and go back to her little house by the sea. As for Erika, I'm hoping she'll get to wash and style her hair at some point soon.

Friday Surf Report -- Things I Like

• There's a common theme running through many of my posts, and that is one of escape. I'm just about dying to escape, actually -- perhaps to one of the cabins featured on freecabinporn, like this one in Finland. No offense, but I don't want company. You'll have to pick your own porn.

• My friends Erika of The Flight of Our Hummingbird and Phil Dzalio of Healing, Empowering and Thriving continue the struggle with Amber, The Girl Who Would Insist on the Distinction Between Non-Persons, Humans and Persons Despite Being Admonished By Persons Old Enough to Be Her Mother, Wise Enough To Be Shamans and Angry Enough To Rip Holes in the Ozone. Erika, who is not only brilliant but incredibly funny, told me that her comments  to Amber (that were possibly the longest comments known to the blogging world) on Amber's website, where she proudly carries on the discussion using all the knowledge that her recent Bachelor's degree in Philosophy has gotten her, demonstrated her (Erika's) own commonality with the None Shall Pass Knight of Monty Python's Holy Grail. I think it's an apt comparison for many of us in the disability community who just can't give it up. Our formidable strength and resilience, though, is only as strong as our ability to not take ourselves seriously. We do have the most amazing senses of humor, if I do say so myself.

• I'm savoring the last pages of The Hare with Amber Eyes by Edmund De Waal. I've written about it before and highly recommend it.

• I love children's books. I really love vintage ones. I really, really like this blog.

Stimulate Your Brain Saturday

My good friend and fellow mother Erika of The Flight of Our Hummingbird said this, yesterday, in a brilliant post on sociopathy and our current political/economic climate:

Anybody who is masochistic enough to read through the comments after disability-related articles is keenly aware that a frighteningly large number of our fellow humans consider people living with disability a mere fiscal burden on society. There is an apparent tendency to assign value to people based on their profitability or their financial contribution to society. I find it rather ironic, or flat-out hypocritical, that there is so much disapproval and railing against "wasting" our scarce resources on accommodations and services for people with disabilities who allegedly don't contribute to society but there is little protest against the outrageous amount of money paid out to basketball players, movie stars and unscrupulous CEO's, whose societal contributions are  questionable. I wonder how someone can find it completely acceptable that a person is paid millions of dollars for being able to skillfully throw a ball, yet suggest that it would be better to euthanize people with severe disability so taxpayers wouldn't be burdened by the 8-dollar hourly wage of the caregiver providing In-home supportive services. 


Read the rest HERE.

We're a weird bunch.

Humor is tragedy plus time.

Mark Twain

My friend Erika and I were talking on the phone last night, and I was sharing with her my recent visit to The Neurologist. Erika has a child with a seizure disorder as well, and even though her daughter is many years younger than my Sophie, Erika's sense of humor is sharp, achingly so, and she jumps right into the Roman gladiator pit with me.

As you might have surmised, Sophie's honeymoon from daily seizures is now officially over. The drug Vimpat has ceased working as well as it was, and now we're on the tiresome wheel of deciding what to do next. We don't really have any options that jump out at one, unless you think another ketogenic diet trial is worth it.  The second and last time we tried the keto diet was about a decade ago (the first time was in the early days -- the mid-90s, when not many people even knew about it), and while it helped Sophie a bit as far as seizure control, it also turned her into a caged tiger, ravenously, desperately hungry with impacted poop (I'm not mincing words). It traumatized me so deeply that I look on that time as being equal to the trauma of her diagnosis and the early days of high dose steroids. That the connection between mothers, children and food is a deeply primitive one is not lost on me, but acknowledging it does nothing to dull the pain of that time.

A second choice is a revisiting of the drug Vigabatrin (or Sabril, as it's also known)-- one of the "newer" approved drugs and one that we tried, also, back in the mid-90s when we ordered it from England. I've waxed philosophical about Vigabatrin in a chapter in my yet-unfinished book -- the chapter was then published on epilepsy.com's website.  The drug wasn't approved for many years in this country because of some very serious side effects involving the retinas of the eyes. It's now approved and used as a front line drug to control infantile spasms, the terrible epileptic syndrome that Sophie was diagnosed with -- a form of epilepsy that continues to stymie the best minds. In fact, very little progress has been made for babies and children with infantile spasms in the sixteen years that we've been part of that club. In order to go on the drug now, one is subjected to a strict protocol -- eye exam baselines and the signing and initialing of pages of caveats and warnings and information. This is what I did at The Neurologist appointment yesterday, and as I told Erika, I found it bizarre and not a little hilarious that I was able to casually check the little box and print my initials, EA, next  to sentences like: I understand that about 1 in 3 infants taking Sabril will have damage to their vision. I understand that if any vision loss occurs, it will not improve even if my infant stops taking Sabril. 

I loved Erika when she burst out laughing when I told her about initialing this sentence: I understand that there is no way to tell if my infant will develop vision loss.

Unless you get it, you're probably not laughing, but we were and I think if we were two women in vaudeville we might have been slapping our knees in hilarity, knocking each other over with the force of the absurdity.

What really set us to being utterly cracked was my description of our other "option" for control of seizures: the vagal nerve stimulator or VNS. You can google and read about it online, if you'd like to know more. It's been around for quite some time and really doesn't have a fabulous efficacy rate -- the rule of thirds, much like drugs (one third improve, one third stay the same, one third get worse or go off). In any case, here's a scan of the box that had the informational DVD and brochure. 

In describing the packaging, I wondered aloud to Erika about the work that went into that marketing and how hard a group worked on  just the right words, the right picture, how much to suggest, how to harness hope and propel people toward treatment. I wondered aloud to Erika whether the two women frolicking on the beach might be our daughters one day or maybe even the two of us, looking beyond. 

We just laughed and laughed and laughed.

Sanity and happiness are an impossible combination.

Mark Twain

Day Trip

Yesterday, I headed south with my three children to San Juan Capistrano where we met our friends Erika of The flight of our hummingbird, her husband Phil and their adorable daughter Izzy. The flowers at the Mission in San Juan Capistrano were outrageous -- a true riot of color and abundance.

California poppies

California wildflowers and perennials

A riot of roses

We walked around the gorgeous grounds for a bit; Erika and I answered a casual passerby wondering about what it was like to have a special needs kid with our customary grace and then rolled our eyes at each other. In all honesty, though, the woman was well-meaning; we learned that her child was an eighteen year old boy with a disability, and she determined that it was easier for her than for us because he was a boy (and therefore didn't have a period). Oy.

Erika and Izzy

Sophie and her 70s rock star hair look

Oliver insisted that when he waved,t he koi came to the surface.

After hanging out with the koi and the flowers, we drove down to Dana Point and had a delicious taco lunch at a local taco shack. Oliver drank two giant glasses of Cherry Coke and proceeded to talk non-stop for the next six hours. I will blame that, entirely, on Phil, as he sat with my boys and allowed it to happen. Erika and I sat with the girls, ate our fish tacos and caught up with each other -- it's amazing to me that I've only known Erika through our blogs and two visits -- she feels like a little sister to me --perhaps even more deeply connected than my own. After our lunch we went to the most amazing park and beach -- walked along with our girls, trailing the boys as they poked in the sand and laughed at Sophie and the amazing pull of the sea.

Oliver entertaining Izzy

I took an embarrassing number of photos of surfers -- but you know I have that thing about surfers --

A beautiful, relaxing day (except for the chatter induced by Cherry Coke!).