Oh, the humanity

Okay, I talk about poop too much. I know that about myself. But I cannot take this (literal) shit anymore. And yes, I know that I sort of started the whole thing. In my very brief career as a nurse before Elena (my oldest) was born, I chose to work the oncology unit. Listen up, nursing hopefuls: If you don't care to handle poop, oncology is not for you. Honestly, a good portion of your day will be spent helping patients to either start or stop pooping. Even when there are such grave matters at hand, people care a great deal about their bowels. I'm telling you.

I remember one patient in particular, who had not pooped for well over a week. We started our fun-filled journey with a garden-variety fleet enema. We mobilized, drank prune juice, took stool softeners, and ended the day with the always-sexy hot oil enema. Side note: Even if you have just met that morning, if you give a grown man two enemas in one day, you are now besties, and are required to invite each other to your kids' baptisms and whatnot. It's, like, the rule. Anyway, I was in the hallway charting, and he called me into his bathroom to behold the fruits of his labor. A chocolate morsel would be a good reference point. We just each threw an arm around the other's shoulder, and laughed until tears ran down our faces. Poop will put you in touch with your humanity, folks.

So anyway, Elena was born, and other than the garden variety up-the-back-down-the-legs fun that all parents enjoy, we had no problems. Then, I had twins. Although initially on board with the idea of new babies, Elena went on a nine day poop strike when they were born. There were tears of joy all around when she finally fired one off. But the struggle continued. She entered her avant garde poop art phase, wherein she would sneak the contents of her diaper into the babies' co-sleeper next to my bed, or else use it much like a crayon on various household surfaces. It was a joyful time for all of us. But, things settled down. Three babies in diapers is a lot, but we made it.

Now, Elena is six years old and Gabby and Jonah are almost four. One would think that these people are old enough to handle their own toileting, and yet, they are not. I am still master of ceremonies for all potty events, and I am SO ready to retire. Okay, Jonah is delayed in his potty training because of his SPD. No problem. BUT, he was doing so awesome, making it through whole days without accidents, etc. Over Christmas break, we decided to try big boy panties (briefs? whatever) and naturally, he got a stomach bug that day and decided that underwear is foul and disgusting (in this case, he was not wrong).

Gabby, much like her sister, has decided that she just doesn't want to poop anymore, and spends a great deal of her time (and my patience) in the pursuit of prevention. That girl has buns of steel, no joke. So, tonight as I was taking Jonah out of the tub and drying him off, I called to Gabby to check on her. No answer, so I ran to the tub, and she was standing there, you know, squeezing. Red-faced and panting, trying to prevent the inevitable. So, I called to Elena to ask her to help Jonah into his pull-up, while I put Gabby on the potty. Gabby was totally wet and sliding all over the seat, and still trying to keep her knees together, and I'm trying to push them apart, and she's wide-eyed and fearful because a) she doesn't want to poop and b) she doesn't want to fall in and die in a toileting accident like Elvis. Finally, I get her legs open, and it's like I'm working the labor/delivery unit. "Push-push-push! You can do it! Almost there! Puuuuuuuush!" Meanwhile, rather than helping Jonah to step into his pull-up, Elena has opened the tabs on the diaper and is trying to get this four-year-old to lay down like a baby, so she can diaper him, which he finds hilarious and infuriating, equally. Finally, Gabby and I succeed in our efforts, and I throw her back in the tub, and get Jonah into his diaper. Now, naturally, the product of our labors will not flush. And why would it? The physical properties of this specimen (mass, density, dimensions) simply forbid it. I'm frustrated, and trying to get the thing to flush (repeatedly) while muttering obscenities under my breath. Sensing a moment of drama, Gabby puts her head in her hands and laments, "What have I done? What. Have. I. Done?"

Indeed.

This is my life, y'all. I wouldn't trade it, but I wouldn't say no to a vacation, either.

Thanksgiving

Last year was our first year for Walk Now for Autism Speaks. I remember setting up the donation page for Team Wonderboy, and when I set the fund-raising goal at $1500, I had to check myself. I thought- Okay, crazy. People are not going to care about this just because it's important to me. I re-set the goal at $150, which was blown out of the water almost immediately. My beautiful family and friends donated over $2,000 and it took my breath away. I know that autism is common enough that most of us know someone affected by it, but for me, I felt that all of you were supporting my Jonah, lifting him up and cheering him on.

This year was no different, and again, I am overwhelmed by the kindness and generosity you all have shown. I can tell you, these kids are so worth it. More than that, when they get help early, it makes all the difference, so thank you, thank you, thank you for your help.

Team Wonderboy 2011:

John Hooks
Mary Hooks
Katie Hooks
Weldon & Glenna Ferrell
The Banister Family
Otis Rhodes
The Davila Family
The Smith Family
The Moffett Family
Sarah Mitchell
Shauna Spear
Aaron Keffeler
Lindsay Scarborough



A special thank-you and sad farewell to Steve Jobs. You have changed the world for all of us, and for the autism community in particular. You gave a voice to so many locked in silence, and gave so many autistic children a new way to learn. You will be missed.

Enough

My friend Bea and her family are struggling so hard right now. Her son was born with a serious congenital problem, and he's already had the first of many surgeries and been hospitalized several times. I remember the day he was born, and I called Corbin, excited to tell him the name and measurements and all of that first day stuff. Later, I came into the room with tears in my eyes, and said, "Something is wrong with Bea's baby. He has surgery tomorrow", and Corbin just sat back in his chair, closed his eyes and said, "Come ON". I knew just what he meant. It seems lately, nothing comes easy.

About a year ago, Jonah and my friend Lisa's son got their diagnoses around the same time. Jonah was diagnosed with autism, and Lisa's son was diagnosed with a malignant brain tumor. She had had trouble with infertility, lost twins at 20 weeks, and finally had a beautiful family of four. And then this. It put our diagnosis into sharp perspective. We might be fighting for Jonah's education, for his happiness, but we were not fighting for his life. Lisa's son is finished with treatment now, and has passed the last two screenings without incident, but really, will his parents every sleep easy again?

My friend Ashley finally brought her babies home from Ethiopia a few weeks ago, after trudging through six years of infertility hell. I can't tell you how happy it makes me to see such joy on her face, but I know that after what she's been through, she'll carry a stone in her heart forever, no matter how much love builds around it.

Honestly, I'm so grateful for the blessings in my life. In many ways, I have had things pretty easy. I never had trouble conceiving, my children are all physically healthy, and Jonah is learning and improving every day. But. Lately, it is so hard. Everything feels like a struggle. Each time I change Jonah's diaper, he either fights me with all his strength, or runs, giggling (and naked) around the kitchen island. Note: my island is about 9 feet long and 5 feet wide, so I can't just grab him (and he knows it). It' sort of funny, but not. I do have to get kids to school on time, and when everything is a fight or a chase, it's just exhausting. And absolutely everything can be this way: meals, bath time, getting dressed, getting into car seats, going to bed, getting into the building at school, grocery shopping, therapy appointments, everything. He screams for his iPad, then immediately starts screaming in frustration. If he hurts himself, or gets too frustrated, his response is to lash out at one of the girls, hitting and kicking. It's relentless. Relentless.

The real issue for me is that there is no end in sight, not even any break. Maybe Jonah will improve enough with his therapies to make it through mainstream school without incident. But, maybe his aggression will worsen, and get us kicked out. Maybe, when he's a teenager, and strong, he will be a physical danger to all of us. Maybe he will never go to college or be married or have children or be happy. Or maybe he will do all of those things, and I am worrying for nothing as usual. The maybes keep me up at night, break me down, make my blood run cold.

I guess I just want it to be okay to sometimes say- this is so, so hard. It's too much. It's unfair and it sucks, and I wish things were different. When my mother was going through treatment for breast cancer, absolutely everyone told her how tough she was, what a trooper she was, how impressively she was handling everything. It was true, but eventually, she did get sick of hearing it. She was sick, and she just wanted this terrible thing to be over. She didn't want to be a "rock" or a "tough old broad". She wanted this bad thing never to have happened, and what's wrong with that?

There's this pressure to feel constantly inspired and motivated and grateful. To feel the grace, and learn the lessons God has for us, and you know what? I do feel that, nearly all the time. But it can be heavy load for all of us, each in our own way, and sometimes I just want to say- enough. I need five minutes or five hours or five days to just cry and be angry, and I need that to be okay.

School starts next week. All three of my kids are on different schedules, but there are tiny windows (two hours on Tuesday, and two on Thursday) when they are all at school at the same time. Four hours a week. All to myself. Chances are, I will spend those hours cleaning or grocery shopping, but it's four hours of possibility. Rest and respite. For now, it's enough.

For Greg

When I was in high school, my friend Greg gave me the nickname "dream-squasher". I'm sorry to say, it was apt. Many of my friends had aspirations for careers in theater and other arts, and my constant refrain was, "Yeah, you might wanna back that up with a business degree or something". To be fair, my sister had just come back from New York City Ballet, her career already over by the age of 20. It just made me sick to think of all the years of work and all the heart she put into that, and it was already gone. I just wanted everyone to play it safe, to set their sights on the middle, which I reasoned would give them a better chance at success.

Then, I had kids.

I mean, where is the fun in keeping your expectations low? What's the worst-case scenario? You spend your life in the pursuit of something you love, whether you are "successful" at it or not. What better chance do any of us have for happiness? I can tell you that I will be cheering at the top of my lungs for my kids, whatever they choose to pursue. My wish is for them to have the biggest dreams possible, and not to be held back by doubt.

I'm glad to say that my friends did not take my (terrible) advice. They are all quite successfully pursuing their dreams (Emmys and Golden Globes come to mind, Mr. Parsons), and Greg is a very well-loved and hugely successful theater director at a high school near Houston. It must be thrilling for him to know that he is changing those kids' lives and giving them such a unique experience. Really, I'm not sure I know anyone with so much imagination, and he is starting those kids on their way with such a gift.

A few days ago, I posted a rant on Facebook about name-calling/discrimination against autistic kids. Greg wrote, "Some of my favorite and most brilliant students have been artistic/autistic!" And I just thought... huh. He has autistic kids in his theater? It never occurred to me that Jonah might pursue something like that. I mean, the whole empathy/emotion thing can be a problem for kids on the spectrum, so it just never crossed my mind. And shame on me. Jonah is the sweetest, warmest, funniest kid, and who knows what he might do? God willing, I hope he'll find fantastic teachers like Greg who will support him, encourage him, and lift him up.

As a parent, I worry nearly constantly about my kids. About accidents, illness, bullying, keeping them off of drugs (I know, they're 6, 3 and 3, but still...). You know- pretty much everything. But, I'm glad to say that my overriding emotion these days is hope. I just hope and hope and hope for them. For everything they wish, everything they can imagine.

"Ah, but man's reach should exceed his grasp, or what's a heaven for?"
-Robert Browning

Twelve

Things I like about my husband:

He still wakes up early with the kids every other morning and gives them their bath every other night. It's my understanding that many dads don't do this, and I can tell you- it rocks.

His default emotion is joyful/content.

He is boyishly charming in his enthusiasm for Texas Longhorn football, and I get to cash in on that with season tickets and trips to Dallas for TX/OU.

He'd rather read than watch TV (which gives me free reign over the DVR).

He does nothing to excess.

He takes care of lawn and car maintenance, which I hate doing myself (Okay, I have never actually mowed a lawn, but I feel certain that it sucks).

Everywhere that he has worked, patients bring him gifts for holidays, and take the time to tell me how well he takes care of them. He is kind and generous with people.

He's really tall, and can reach things on the top shelf for me.

If he "can't think of anything else", he gives spa packages at Lake Austin as gifts.

He restricts his commentary to rolling his eyes when I drive over curbs (to see the value in this, you should know that I do it CONSTANTLY).

Okay, there's a lot more I like about him, but you get the idea. I ended up with a better partner than I could have ever imagined for myself, and certainly a better man than I deserve. We started dating only a few weeks before he graduated, and only a few weeks after he ended a long-term relationship. I felt sure that I had missed my chance with him, and it makes me panic to think of all that I would have missed. That single blessing has led to pretty much all other blessings in my life, and I can never say how grateful I am. Corbin, you are the best thing that ever happened to me. Thank you for every day we've had together. Here's to the next twelve and the next and the next. Happy Anniversary.

Give

Do it for her

I met Ashley in nursing school, and we were fast friends. Really, the only way I made it through pharmacology was gossiping and sharing the daily crossword with her, (and then later having to cram intensely for the two hours prior to an exam, which we all know is the very best way to learn). In this picture, me and Ashley (she's on the right) and our friend Bea are celebrating graduation, just weeks before Elena was born. This is just around the time Ashley and Lee began trying for a family. Elena is just finishing kindergarten, but Ashley's arms are still empty. The past six years have been filled with tears, hormones, costly procedures, and ultimately, five failed IVF procedures. Five. Now, at long last, she has met her babies and they will hopefully come home with her very soon. In one way, at least, she has been lucky. Her babies are doing well in their orphanage, despite the crushing conditions. Many other babies are not as lucky, and they need our help.



Do it for them

Ashley and her husband Lee are just what you might picture when you think about ideal parents. They volunteer with the homeless, and participate in the Big Brothers/Big Sisters program; they are active in their church; they are well-educated and able to provide for children; Lee is a children's musician; they are fun-loving, kind, and generous. If we all had to have such rigorous criteria to be parents, the world would be a nicer place. Really though, what it all comes down to is this: They desperately want to be parents, and their babies need and deserve to be loved and cared for. The orphanage is the bridge between the two parts of this family, and they are struggling mightily. (They took this picture in NYC just minutes before finding out that they were matched with their babies. Despite everything they went through, they believed.)



Do it for the babies

There are more than 4 million orphans in Ethiopia. The total population of Austin is less than 2 million. Really, I just can't wrap my mind around that. These are human beings, children, no different from my children or yours, and no less deserving of a family. Many of them are sick and have needs that will never be met. It feels hopeless, but it is possible to help. Even the smallest contribution matters. Diapers. Formula that won't have to be diluted to stretch for every child who needs it. A clean place to sleep. You'd be amazed by what you could provide with so little.

Do it for you

You always hear, "Give 'til it hurts", but I say, "Give 'til it feels good". You'll never regret it. No matter how much or how little you can spare, it makes a difference in their lives and in yours. There are so many good reasons to give these days, and so many causes that need our help. It can be completely overwhelming. I just do what I guess we all do- choose the things that move me most, and do something. I hope that you will be moved to help these families find each other, and to share your blessings.

http://ourbabybots.blogspot.com/

Swan

I've been thinking about my sister and this time in her life since Black Swan came out. Rest assured, she had a much more pleasant experience with her ballet career, and a far more graceful exit. I remember her leaving for New York on my very first day of high school, and how much changed on that day. I wouldn't trade a minute of my time in high school (though my fashion choices remain a mystery), but our experiences were so different. I mean, she took her SAT with Vanessa from the Cosby show. I'm pretty sure I ended up at Denny's with Sarah, Jim and Greg after mine.

I guess I just envy that she had that time in her life that was truly extraordinary. I wonder sometimes if there is still something in me that might make me special in that way. My fantasy WAS to write a critically-acclaimed novel, which Oprah would then put on her list (I love Oprah- I can't help it). I can't BELIEVE she's retiring. Now I have to come up with a new plan. Also, it's sort of unlikely that I would be able to write such a book, seeing as I lack the imagination, talent and tenacity. Also, I subscribe to US weekly, which doesn't seem very writerly.

What I do have are my own extraordinary moments, the ones that changed my life. The day Corbin first asked me out, just outside of the tower at UT. I was already sure about him, even then. The little moments I had with patients and their families in my brief career as a nurse- when you know that person has been stripped bare, is opening their true self to you. The morning I found out I was pregnant with Elena, and held on to that delicious secret all day before telling Corbin. The ultrasound that showed I was having twins, and the first time I held them and thought, "Oh God, now what?".

All I have ever really wanted was a happy home, but that is not such a simple thing. Many people who are wildly successful in other ways never have that, so I recognize my unbelievable luck. It is, in a way, extraordinary.

Peachy

This morning, I dropped off Laney and Jonah at school. Jonah greeted his teacher, took her hand, and followed her into the school, with a last wave and smile for me. One week ago, I was prying a screaming toddler away from my body, thrusting him at his teacher, and walking quickly away, tears running down my face. Certainly not a gold-star parenting moment.

I simply can't believe the change in Jonah over just one week. He clearly loves his new school, and his new teacher pretty much rocks. Ms. Peachey. I admit- her name makes me love her even more. I think all special educators are amazing, but Ms. Peachey is remarkable. Her ability to read children and support their needs is unbelievable. Last year, she wrote a grant to get her kids a second room filled with sensory equipment. If you've ever had the misfortune of writing grants, you know that it's a huge undertaking- something you wouldn't do unless you really cared. She also made sure that we spent a lot of time with her in the classroom before Jonah started the program. That has made all the difference, for Jonah and for me.

The adjustment has been hardest, I think, on me and Gabby. She keeps asking where everyone is (especially Jonah), and I'm like- hush up, you. I'm trying to hold it together! We are adjusting, again, to a new normal. I feel certain now that we made the right choice to go forward with this program, and I can already see doors opening for Jonah, big changes ahead. But, the truth is, I miss him like crazy. When I picked him up on Friday, he fussed about leaving. So, that's good- he obviously loves it there. But. Oh, you knew there was a "but". I'm worried about losing the strength of our connection, worried (if I'm being honest) about not being #1 anymore.

I know. There's no pleasing me, right? I want him to be happy and do well, not to cry when I take him to school in the morning. But, I still want him to miss me and to show that in some way. I'm trying to keep a lid on my crazy, but with limited success. What can I say? I am a flawed human being.

Anyway, things are good. Jonah's teachers feel that he'll catch up with no problems, and be ready for kindergarten when he's 5. Magic words. All in all, we're just Peachey (oh, come on, I HAD to do it).

Favorite

When Jonah was just five weeks old, he caught a cold that Elena brought home from preschool. He spiked a fever, I took him to the pediatrician, it was fine. He developed a chunky cough, I took him to the pediatrician, it was fine. Days later, when he was still sick, I took him in again, knowing that they would roll their eyes at me, and send us home. Instead, I got the face.

You know the face. Suddenly, everyone is quiet, listening, waiting for the words. The nurse checked Jonah's oxygen saturation. Low 80s. Instantly, I could hear the blood pounding in my ears, feel my heart start to race. The rapid test for RSV came back negative, good news/bad news. Not RSV, good. Pneumonia? Already, I knew that we would have to go to the hospital for testing. What I was not prepared for was that Jonah would have to be taken there by ambulance. I can tell you, watching my newborn baby boy getting strapped into the back of an ambulance... it was bad. And once you see that, you can't erase it. It's one of the clearest images in my memory, I am sorry to say.

We made the long ride to the hospital with me holding Jonah's far-too-large oxygen mask in place, so the medic could work. When we got there, I knew it was going to be rough. Many, many attempts to start a line on a dehydrated newborn. Snapping his tiny body into an immobilizer for x-rays. Some wise, kind nurse suggested we leave the room for the spinal tap, which I will always be grateful for. They urged us to go eat- it was going to be a long night. So, we went to the cafeteria, put plates of food on our trays, and then sat there just staring at it, tears in our eyes.

In the end, pneumonia was ruled out in favor of bronchiolitis, we spent a couple of days in the hospital getting Jonah fluids and medications, and everything was fine. But. I think that that very day, my brain was hardwired to think- fragile, special, different. As it turns out, I was right. I've been accused of treating Jonah as a favorite, but that's not it, really. He just needs me more, has always needed me more. Honestly, the girls have always been tougher, more resilient, more independent, whether by design or by default. Don't misunderstand, they get their share of attention. Lord, do they ever. But, if I have to work twice as hard to get a smile out of Jonah, I'm going to do it, every time.

The truth is, they're all my favorite. When the babies were born, I wondered if I could ever love them as much as Elena, given that she had a two-year lead, and was obviously the best baby in the world. Gabby makes me laugh all day long, is a world-class smarty pants, and is stinkin' cute, if I say so myself. And you know how I feel about Jonah, my beautiful, wonderful boy. I love them all to the point of breathlessness, and they're all my favorite.

Vaccines? Still? Seriously.

So, I follow Autism Speaks on FB, but I'm going to have to stop looking at it. The new study in the news this morning, suggesting a link between closely-spaced pregnancies and autism, is causing the usual ruckus.

Folks, the study does NOT say that IF your kids are less than two years apart, they WILL be autistic. There is merely an increased risk/incidence, even after adjusting for age, race, education, etc. It is an area of scientific interest, not a scape-goat.

Nevertheless, the boards are lit up with angry parents fuming that we are being fed a pack of LIES. That somehow our boogey-man government is trying to "distract" us from the real problem (vaccinations, naturally). Look, I'm pissed that my kid has these difficulties to overcome, and I would like to know what the causes are too, but when I read these responses, it makes me feel even more alone.

I just don't understand why we are STILL talking about vaccines. The ONE "study" that showed a link of any kind was done by Andrew Wakefield. The study was retracted by the Lancet, Wakefield lost his medical license, and now it has been revealed that he deliberately falsified his results, in addition to having a conflict of interest (some of the participants were litigants in a suit against the vaccine manufacturer). And keep in mind, there were only 12 subjects in the study to begin with. AND, now children are dying of PREVENTABLE diseases. For. No. Reason.

Several parents made posts to the tune of: show me the studies comparing autism rates in vaccinated vs. un-vaccinated kids, and then I'll listen. Um. Okay. There are literally dozens, including a Japanese study (Honda, Shimizu, Rutter, 2005) with a gigantic sample size. Meanwhile, Wakefield's findings have NEVER been reproduced in ANY study, and if your findings can't be reproduced by your peers, you got junk.

I just don't understand the dedication to this issue, when it has been proven, again and again, that there is not a link. How many research dollars are we going to waste disproving this nonsense? There IS a cause (or, more likely, many), and we really need to move on find out what it is/they are.

I mean, is it just me? Anyone? Anyone?

Crazy Train

Okay, so I suck at blogging.

Anyway.

So, this is a shameless bid for support. Jonah will start his PPCD program on Monday the 17th. Cue shallow breathing, sleepless nights, hysterical bursts of tears. I really just got used to sending him to preschool 10 hours per week, and now I'm sending him to the elementary school for 25 hours per week. Bad thoughts: I feel like I'm handing off my kid for someone else to "fix". I feel like I'm ripping him away from his twin. I'm afraid that the close connection we have will suffer with all these hours apart.

Rational thoughts: He is autistic, and needs 20+ hours per week of DTT, plus speech and OT. I am obviously not qualified to do any of this myself (and even if I were, Gabby would just jump in with the answers before Jonah could even respond). Plus, he needs the social interaction with a real peer group. His new school schedule will also allow me to put some of my focus on Gabby, which she deserves, because let's face it- the squeaky wheel gets the grease, and she's been pushed to the back of the line far too often.

Jonah has responded so well to private therapies, and I suspect that he will really take off in this program, but I'm letting my fears get the best of me, as usual. Right? Like, this is the right decision and all will be well and Jonah will thrive. Right?

Oh, and PS- Did you know that there is a particularly unattractive form of psoriasis that you can get following a strep infection and/or period of extreme stress? Oh, yes. For extra fun this holiday season, I upgraded from garden-variety housewife frump to full-on gargoyle. Ho ho ho. Thank God for steroids.