The Grit and Grace of Caregiving

My friend and fellow caregiver, Jason Lehmbeck, and I have launched our passion project, a podcast about and for caregivers of children and young adults with special healthcare needs and disabilities. It's called WhoTF Lives Like This?! and is available anywhere you listen to podcasts. We've been working on this for more than six months, and I am just so excited to tell you about it. We'll be interviewing the most amazing people who do the most amazing things with their lives -- both publicly and privately. We'll be talking to men and women who care for their children with special healthcare needs and disabilities, to siblings and to those who support us -- the doctors, educators, therapists, etc. working to help and make our lives and the lives of our children better.

I hope you'll subscribe to the podcast, check in regularly at the website to learn about the guests, interact with us on our Facebook page and in the comment section or otherwise get in touch with your suggestions and ideas. If you'd like to be a guest, you know where to find me!

You can listen to the teaser which gives you a good idea of what we'll be doing on the podcast, and we've also launched the first episode where Jason and I interview one another in much the same format that we will be using going forward.

Please help us to share this resource with all those who might be interested. This is a podcast for everyone. While the podcast pays particular attention to the lives of caregivers, their grit and grace is relevant to all human beings, and just like we have found, our work with and love for these most vulnerable of our fellow humans will expand your own heart and view of the world.

You can access the podcast at our website HERE.

Please subscribe! Leave a review, too! Thank you!

Benignity and Trickery

I'm going to tell you about what might happen to siblings of kids with complex medical needs. No matter how conscious you are about giving them equal time, things slip through the cracks, stuff is blown off, "little stuff" is overlooked. Oliver complained about pain in his finger for a year. I acknowledged it, but I also blew it off. I blamed it on diet or inflammation. You need to stop eating junk, I might have said. How bad could it be? Both Oliver and his brother Henry are strong in every way. They are strong and sensitive. They are honest and funny as hell. Like their sister, except they haven't gotten as much attention. It turned out that Oliver has an aneurysmal bone cyst. Benign but tricky. Today he had a second surgery to remove it as the one in December didn't work. The tumor came back, began eating into his bone. Hopefully, today's intervention will last. I sat by the bedside in the recovery room for hours, running my hand through his hair, watching my nearly grown boy sleep off the drugs they gave him. He made jokes in his sleep, smoothed all my rough edges worn thin by time in hospitals those weird hours ticking by. Precious child. Brave children.

I'll be catching shit for the "inflammation" and "too much sugar" talk -- but that's okay. We all need to be humbled and set straight.

Power to the siblings.

White Elephants

Last night, the wind was whipping around the Los Angeles streets, cold for these parts. We had been at a white elephant party, a silly affair with beloved friends. Sophie has been good. She can't walk too well but she's seizure-free for the last ten days or so and is preternaturally alert.  Maybe even more but who's counting? I weaned her a bit more from the benzo, so who knows when the withdrawal seizures will kick in. I have also added CBDA to her regimen of cannabis medicine. Maybe she'll never have another seizure and live happily ever after. The boys helped me to bring her in from the car, and maybe it was a let-down from the party and maybe it was how difficult it is to maneuver her around (I mean really difficult despite her weighing only 72 pounds), but one of them had her and one of them worked on hauling the wheelchair from the back of the car and I fumbled with the white elephants and Sophie's bag and then the alarm and the door, and I heard Oliver say Hey Henry aren't you glad to be back from college? and there was rue in his voice and maybe it was the fuckery of the day, and maybe it was the wind but it gave me a jolt and everything everything that I am and made was wrapped in rue for as long as it took me to disarm the alarm and usher them into the house.

Listen to all, plucking a feather from every passing goose but follow no one absolutely, goes a Chinese proverb. 

Seizures and the Full Moon

I realized this morning that I hadn't posted a follow-up to Friday's dire post about Sophie's seizure clusterf*@k. I expressed my gratitude on Facebook toward all those people who sent us such loving and encouraging words, but I neglected to do so here, so thank you, thank you, thank you for buoying me. Sophie hasn't had a day that bad in a couple of years, and I have no idea what prompted it. I have several friends in the seizure world whose kids had particularly difficult days last week and over the weekend, too. We all did the dance that I alluded to in my last post, and we all, in our weak attempts at control, tried to figure out why. 

Was it the full moon? Possibly, as many of us are convinced that full moons exacerbate seizures despite there being no "scientific evidence or correlation." The fact that our kids seize regularly and more violently during full moons is generally reduced to anecdote by the great and almighty Science Community. We of the tiny little mother minds™ are apparently just howling at the moon in between wiping our children's brows, preventing their limbs from banging into furniture as they seize, agonizing over whether or not to administer rectal Valium (because the after-effects are so awful), syringing liquids in them because they've forgotten how to swallow between the seizures and the drugs and weeping on the sides of beds at the goddamn relentless of it all.

So, Sophie is home from school today, recovering. I hope. She is refusing liquids -- or not exactly refusing but rather having difficulty taking them. She reaches for her sippee cup and brings it to her mouth but doesn't seem to remember how to suck out of it or how to swallow other than in gulps. I am, basically, force hydrating her, dropping 1 ml syringes of liquid into her mouth and rubbing her cheeks and throat. Last night at dinner,  I compared myself to the British police force-feeding the Irish Catholics and suffragettes. The boys were horrified. Every now and then, the instinct to purse her lips seems to come back, but then she flings the cup away. I've resorted to looking in her eyes and threatening the hospital and IV liquids if she doesn't get it together. This is, of course, in my mind. I don't actually say it. People love to say that extreme parenting teaches you to not sweat the small stuff. It's been my experience that the small stuff is often what breaks you, and this weird liquid strike has the potential to break me every single moment. OK. I broke and wept this morning after getting 4 ounces into Sophie and wondering for one impossibly long moment whether she had permanently forgotten how to drink and swallow. It's happened before, though, so I'm hoping that she'll regain the skill as the drugs leave her system and things calm down with the waning of the moon.

My friend S who is no stranger to extreme parenting (and far more extreme than I despite her son being less than a third of Sophie's age) gets the grand prize of cheering me up the most.  When I shared that my tiny little mother mind™, in its dogged attempts to control the situation, believes that the full moon might be the cause, she revealed that her son had had a brief and unusual seizure with the full moon but had never heard of that theory.  Here's a snippet of our texts:

But her best comment -- the one that released me from my angst and made me laugh long and hard was this:

We both agreed that the whole thing is particularly frustrating because we -- well -- love the moon.





I'm a little giddy from the loss of sleep and Force-Feeding of Liquids. Can you tell? Saint Mirtha is here, though, to relieve me, so I'm going out with Oliver. Thank you again for all your love and support. I could never, ever do what I'm doing without it.

Disability/Healthcare Systems Equations in The Greatest Country On Earth

One arbitrary Medi-Cal denial form from months ago that isn't really a denial but more a shifting of benefits from one agency to another, yet neither agency knows which one

Call all these numbers. Be told to call back. Call another number. Be told a different number. Be told another number. Get through to recording. Be told that when your Medi-Cal identification has letters, in addition to numbers, this is what you do: Press *. Press key that has letter on it. Press number 1,2,3,4, for whatever position that letter might be, press rest of numbers and repeat previous instructions if another letter occurs, press #. Make mistake. Hang up. Start over. Get through and speak with telephone operator who can't help. Get new number.

The BIG FILE CABINET with twenty years worth of paperwork, roughly representing above factors times twenty (for years)

A tear-stained woman, clutching a mala in her teeth who has decided to let it rest for a bit since no one has answered her question.

Bare Arms, Not Bear

The woman in the black cardigan is my Italian grandmother, and she's standing next to her sister outside of their ramshackle house in the small town of Cosenza in the Calabrian region of southern Italy. I imagine it's nearly 100 degrees outside despite the heavy clothing, but they're all protected from drafts, the kind of wind that grabs the neck and kills you if you're not careful. I have lately begun baring my arms after a period of many years. My attitude is a sort of screw it, I'm fifty years old and who the hell cares if they look like my Italian grandmother's? Covered or uncovered, my grandmother was a very strong person physically, if not mentally. Legend has it that she carried bags and bags of groceries for many blocks in New York City and then up many flights of stairs unassisted. I, too, have pretty decent upper arm strength which has come in handy with the disabled child, but my arms are just not cut in that sinewy way that comes from exercise or genetics. They look soft, and they are soft and their strength is buried deep, like the plastic king in the middle of the dough of a King Cake. How's that for metaphor? This summer I was inspired by a friend of mine at Expressing Motherhood who made an amusing video about baring one's arms, and for three days in a row I've worn three different outfits and bared my arms and am now crafting a post about the act.

That leads me to something a bit more substantial -- or should I say as substantial as my bared arms?

Anywho.

Last night, Cheryl Strayed, the mega author of Wild, posted an interesting article by Katie Roiphe on Facebook. Listen, I'm not really friends with Cheryl Strayed, I just "liked" her Facebook page, and every now and then I'll "like" what she posts along with tens of thousands of others. Roiphe's article was about the very hot (both literally and figuratively) Karl Ove Knausgaard's new series of memoirs that are slowly being translated into English. Her article basically proposes the question "what if a woman wrote it?" Knausgaard's memoir evidently outlines in minute detail his every personal struggle, including the minutia of his daily life as father. He talks about diapering his babies, I think (I haven't read it), along with philosophy and whatever else is going on in his life and mind. The books are a huge sensation. I want to read them, frankly. But, yes, what if a woman wrote it? Roiphe makes an amusing case that a Karla Ove Knausgaard would probably receive a far different response than her male counterpart were she to publish the same, and much of that negative response would come from women.

Generally, I'm beyond bored by things like the mommy wars and the work vs. nonwork stuff. I think the extreme parenting I've done has given me a sort of trump card that I admit to periodically over-using, but this article by Roiphe really struck me, particularly in the context of my own recently published ebook. Now, I'm not comparing myself to these fancy pants writers. I have a $2.99 ebook that is about 36 pages and covers roughly one and a half years of my life. I've gotten a great response to the book from people of all persuasions, and I've also gotten some criticism that I believe was considerate and worth absorbing. However, one person made the comment that she (a woman!) didn't see it as a book, really, for a literary community but rather as a "passionate article for a mother's community." I've been thinking about this statement for days, actually -- not in any obsessive, upset way but more in a curious, cud-chewing way. There's a tiny ding in that statement, a criticism not so much of my writing's literary quality (which is always arguable) but rather in the suggestion, however faint, that a mother's community holds nothing literary.

Like I said, I'm chewing on this quite placidly. With bare arms.

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.

Sibling Story: Meet Dylan and Her Brother Bear

A good friend sent me the following short essay written by Dylan, an 11 year old girl whose 8 year old brother has autism.  The essay accompanies an appeal for donations to the upcoming Autism Speaks walk in Los Angeles. Siblings of those with autism and other developmental disabilities are sometimes lost in the shuffle for obvious reasons. Statistics indicate higher rates of depression, anxiety and other mental health issues for siblings of the disabled, too. It's something most of us who extreme parent are painfully conscious of, I'd venture to say, every single moment. Those of us who parent "typical" children are often told that they will grow up to be more compassionate because of the relationship, and while I find this somewhat comforting, I subscribe more to the who the hell knows how we all turn out mode of thinking. That being said, I found Dylan's essay so profound, moving and authentic that I asked whether I could share it here. This is an extraordinary child, a sibling of another extraordinary child.

My little brother is autistic. It doesn't bother me much. He's different, but in a way, just the same. I don't ever find myself wishing he wan't who he was. I would not be myself if he was someone else. My parents say they were devastated when they were told that he was autistic. I most likely wondered why they were crying. What about this was bad? Of course, I was too young to understand. I didn't notice he acted somewhat different than others until I got older. One way I could tell was because some people stared at him, or gave him strange, sometimes rude looks, and some people still do. Not many understand. Luckily, my friends have accepted his differences, and are able to have nice conversations with him, despite his disabilities. 

We like to play together, my brother and I. Sometimes tag, hop-scotch, hide-and-go-seek, or any game that siblings enjoy. We have a great time. It is within these moments that I realize: he is not at all different from anybody else in the world. There are many stereotypes that claim that anybody who is different is bad. Back in ancient Greece, the government would leave children who were weak or different out far away to die. It is not only wrong that different is bad, but the way they are using the word "different" is wrong, too. Technically, nobody is exactly the same. There is no "normal" human being. Everyone is different.

There are some things about him that annoy me, some things that make me laugh my guts out, and some things that just blow my mind away. It's annoying when he throws tantrums (which is rather often), and when he hums and moans for no reason. Well, maybe, there is a reason, just one that none of us know of or think is particularly important. It's also not that pleasant when he breaks things. I feel like he only ruins my stuff, but I'm sure I'm wrong. And when he pauses and rewinds movies when I'm trying to watch. But, it is very funny when he sometimes says sentences or words incorrectly. "Come for here," or "I was born until 2005." "Yesterday, for longer time ago," means a while ago, or sometime in the past. Every once-in-a-while, he'll say to us, "What the fu-heck?" He used to call the ocean the "ochin", and tells my pregnant aunt, "You have a full tummy." His enthusiasm is hilarious, too. It's like putting a thousand exclamation marks after a sentence. Even though it makes me angry, it cracks me up when he scolds me. "If you don't do homework, you get no [devices], Dyl-wan." I keep telling him he's not in charge, but I don't think he will ever stop scolding me. His memory is amazing. He can easily memorize addresses. If he ever doesn't remember, he'll ask, "What's that's number for?" Dates are also very easy for him to remember. His drawing skills are definitely incredible. 

If a cure for autism was ever created, I would refuse our offer. My brother is the best brother anyone could ever ask for. I would never change him for the world, but I know I will change the world for him.

-Dylan

If you would like to join us on walk day, please click the link below and search for Team Bachman:

www.walknowforautismspeaks.org/losangeles

I

Maggie Margaret McDonald

It's with a heavy, heavy heart that I dedicate today's post to Maggie McDonald, one of the brightest lights to shine in our community. Some of you might know Maggie from her mother Sally's wonderful blog titled Maggie World. That's where I came to know her, lighting on her shining face, reading of her raucous sense of humor and her dogged persistence to live life joyfully despite serious disability. I had the pleasure of meeting Maggie in person several years ago when I visited San Francisco, and I can still remember her riotous joke-telling -- Maggie couldn't talk, but she used an augmentive communication device and loved a good joke, told me several the afternoon we sat in her house. I texted Sally on Saturday morning, expecting to get together with them again. I had hoped Sally and Maggie would join us in Golden Gate Park on another beautiful day. I looked forward to hearing some more jokes and to laughing with Sally, too, whose dark sense of humor easily rivals my own. Sally called me, though, and told me that they had lost their girl the night before, unexpectedly. Unexpectedly because while those of us in this extreme parenting world might expect to live beyond our children, it's still shocking, still unexpected when they leave us. My heart goes out to Sally, her dear husband Steve and their beautiful sons, Tim and Eddie. I am blessed to have gotten to know Maggie through her mother's words and then my visit with her, but I'm going to miss her. We all will.

How We Do It: Part XXXV in a Series: Normal

Henry, March 2012

This is a meditation on normal. Last night, Henry asked me for help with his Honors English homework. I had to read the short story assigned to them, a John Updike titled A&P, that I'd never read before. I found it exciting and the questions that Henry needed help with, exciting, too. Henry is an incredible reader and a pretty damn good writer, but he currently states that he hates writing and Honors English. He hates getting so deep into a text for annotation and study that the actual reading of it is no longer enjoyable. We talked for a bit about that last night, and I told him about the time I saw Updike at UCLA a couple of months before he died, how his fingers were so long and tapered, how he loved his craft, how I wanted to jump onto the stage and into his lap. We also talked about the upcoming Homecoming Dance, about the girl he invited and what he needs to wear to the dance. I need real slacks, he told me, and shoes. I sat in rare normal, lay in it like a pig in mud. Those of us who are extreme parents generally shush those of you who are not when you counter your normal with comments like oh, I know this is nothing compared to what you go through. We don't want to be any more isolated than we are. We are told that normal is relative. There's no such thing as normal, I've told my sons. My friend who has a son who was normal at two and is now neurologically devastated by a rare disease grapples with a new normal. Last night I recognized normal for what it is. Normal.

Biking from Venice Beach to Santa Monica, Moonshine, Walter White and Looking for a Job

I actually rode my bike with Henry and D from Venice Beach to Santa Monica this afternoon. It was completely overcast when we started, as the summer beach often is, but after lunch and before we biked back to Venice, the sky had opened up to a glorious blue.

Outrageously tiny skaters were racing, jumping and otherwise defying death at this skate park.  It made me want to watch Lords of Dogtown again. Have ya'll seen that? Along with my desire to come back in another life as a surfer is the desire that I have a child who competes in the X Games. Don't tell Henry or Oliver that.

We jumped off our bikes somewhere along the way in Venice Beach, and Henry entertained us in feats of athletic skill. Even at 15 years old, though, he was no match for a guy who looked at least fifty, sported tattoo sleeves, a long ponytail, purple shorts with a spiked belt and was about as agile as a monkey.

I can't figure out how to upload this video properly, but that guy in the beige suit and fancy dress shirt walked up the boulevard screaming for the salvation of our souls. He carried a Bible and was seriously loud. Proselytizers are so interesting to me, and I often wonder how effective they are. As I sit here at my desk at 8:30 in the evening, the sprinklers hissing on, my legs sore and my feet still sandy, I hear his voice shouting Hallelujah, The Lord Jesus Will Save You! in my head, and I wonder what he's up to right this moment.

Ouch.

Tongva Park, Santa Monica

When I got home and Saint Mirtha had left, I lay on my bed with Sophie and read magazines.She slept and occasionally jerked in what I thought was a seizure -- many times -- but then decided was not. Sigh. I read an interesting article in MORE Magazine (for women over forty, ONLY) about a woman in Asheville, North Carolina who produces the best tasting moonshine in the country. Her company is called Troy and Sons. The story was fascinating and very inspiring as she is the mother to three sons, two of whom, now in their mid-twenties are severely disabled. Most of you out there in extreme parenting land know how difficult it is to have a job and take care of your child. Those of you not in extreme parenting land should know that many of us would have a job or wanted to have a job or a career but are unable to do so given the demands of extreme parenting. This is no argument between women who work and women who stay at home -- have I told you before how much I despise that discussion and find it so boring it makes me cry?

Anyhoo.

I'm currently looking for a job, as the big contract I had with a national organization is finished, and the other contract I have with an organization that helps children in foster care, doesn't have enough work for me. Did you even know that I actually have a job and have been working nearly thirty hours a week, off and on for over six years? I like to work, and I need to work -- both because it's stimulating and because I need the money. These jobs have been perfect because they're flexible and allow me to work, for the most part, from home. I get to do what I do best -- write and inspire and advocate for children with special healthcare needs. When Sophie isn't doing well, I can take care of her and stay at home. After reading that article about the woman who makes kick-ass moonshine, I felt inspired to get creative. I'm never going to support myself baking cakes, but there must be something I can spin my skills toward and make a living.

Wait, isn't that what Walter White thought when he broke bad?

Rubber Ducks in a Bird Bath

I woke up this morning with a bit of a headache and bits of thoughts, inane thoughts, and I wondered, inanely, why bits of thoughts come so early, so apropos of nothing, the day being new, the body having rested.  Rubber ducks in a birdbath. As I unpacked yesterday, I wondered when the week spent in Victoria would recede. I changed my young adult's diaper seven times yesterday, put each one into a plastic bag, twisted and tied a knot into the top, threw it into the garbage outside and lit candles in her room to diffuse the smell. My mind was a lake, placid, serene, at worst, matter-of-fact. Hysteria is so often tamped down by those of us doing this extreme parenting, particularly those who have done it for decades. Even a decent practice of meditation brings one only into the present in the present, if you know what I mean. The past, the future, the eternity of it all, leaves traces, bits, at least for me, even on the edge of equanimity. But that week of respite from it all, (even the money, taken care of) filled me up with it all. I glimpsed who I might have been without it all and brought her back, her bits, right here on the edge. Rubber ducks in a birdbath.