We didn't put R2 in school until he was 9. Up to that point I had attempted to homeschool/preschool him, but it seemed like he needed more structure and routine, plus physical, occupational and speech therapy, so we put him in public school and he loved it. Most days he seemed annoyed to come home.

This past Thanksgiving break is when he stopped walking and started his rapid decline, so we haven't sent him back since then, because he was so terribly sick. A teacher from his school comes to our house an hour a day, and that seemed to be working until last week when he started screaming "OUTSIDE! OUTSIDE!" at her. Like us, she was mostly just overjoyed to hear him talk. Later we figured out that what he was trying to tell her is that he wanted to go to school outside our house. He verified that by screaming the word SCHOOL at me for an entire day later that week. It was loud and frustrating and totally awesome. 

Our first trial run was the "job fair", an exhibit the school district holds annually, in which the special education kids get to practice job skills that they might be qualified for. At first I was kinda like, hey, isn't this a little insulting, with the silverware rolling, shelf-stocking and other menial tasks, but then I watched 70 special teenagers go from table to table, learning these skills and getting so excited when the timer beeped and the teacher would hand them a prize ribbon or medal. Richy had the best time. He was so excited to see his friends, and they were yelling his name and making little excited noises. He had to have a lot of prompting to get a can from the table to the shelf, but once he got started he was so proud of himself. He earned 3 medals, which he wore for days. 

The next day we drove up to his school to try an hour or so. I was so touched that every teacher we saw knew his name and was thrilled to see him. It's hard to send a nonverbal kid to school and to trust that he's known and understood and loved. I have total confidence now, though, after seeing teachers who don't even have classes with him cry out of happiness that he's doing so well. We spent an hour in his classroom, and he played the visiting rockstar, only participating in activities that he liked and snubbing the other choices. He didn't talk for them, but he did a lot of jumping and chuckling, and more than one teacher and administrator dropped in to tell me that they had been praying for him and planned to keep it up. 

So we're going to give it a shot. His energy level is super high but he doesn't understand endurance, so he still gets really tired after a little while. Starting next week (this is spring break), we're going to send him on Tuesday and Thursday and see how he does. 

It's hard to believe, still, that he is almost back to normal and in some ways, better than normal. It's starting to get super happy, though. I'm thinking about doing some jumping and chuckling myself. 

R2's recovery continues. Yesterday and today he and I did little test runs to see if he's up to returning to school and it was such a good experience, and I'm gonna tell you all about it, but not today, because this is Funny Week, in honor of my dear friend Tracie. Y'all pray for Tracie's son Mattie as he fights a serious infection and consider helping in a practical way. Now, back to Funny Week.

---

And just like that, the funny is gone. The pressure, people. I'll tell you my first joke, one that used to slay 'em when I was 2. "There's a guy, walking down the road, and..." (a healthy pause, because timing is everything) "and a PIE SMASH IN HIS FACE!"

Obviously, it was a calling. Now I deal primarily in the, "Nice to meet you, Hungry," game, which is met with open derision. "That is not funny, MOM," they say, like I asked for a review. I could tell them that people on the internet say I'm funny, but it wouldn't make any difference, because I have convinced them that the internet is a web of lies, which has helped Toby install less freeware on our computers, but may have lessened my impressiveness around the ol' domicile.

I could talk a little trash about the man I love, but he's delicate these days, what with the near-death experiences and whatnot. I tell you what's gonna happen. I'm going to hit publish and then 40 things will pop in my head and I'll be giggling at myself all night, ALL ALONE.

So that's it, that's the end. Don't worry, Tracie, I'm gonna have a comeback real soon.

March 13, 2013

A Kansas City woman exhibited unimaginable courage and creativity this morning by buying groceries at Walmart. Jessica Clark, 34, took the proverbial bull by the horns today and brought home multiple bags, sending shockwaves through her home and surrounding neighborhoods.

"It was a pretty normal morning," said Clark, a well known Facebook status-updater and mother of 4 medium sized children. "I was having some toast in my bed, you know, holding it up high so the baby couldn't reach it, catching up on some TV, and it hits me: we are totally out of milk." It's a scenario we've all feared, a dilemma that strikes at the very core of every human. These are the moments that define us, will we rise to the challenge or fall by it?

"If there is no milk," says Nobel Prize winner and renowned molecular biologist Hazi Neutenberger, "then what is there? Is there cereal? Dry cereal? Is there anything? There is nothing. Without milk, the people will die." Clark was not unaware of the risks. "I can't say I thought about it for long. The choices were no milk or, you know, putting on real pants and going to get some more." She tells the story in a self-effacing manner, downplaying the agony of struggling into her medium-fat jeans and dressing the baby, moments that any of us would recognize as overwhelming. No one would have blamed her, says an anonymous neighbor, if she had just let it go. "We watched her, from, like, the window. She was just walking out there like it was, like, nothing, just putting the baby in the car and pulling out like, like, well, like a hero," the neighbor says, breaking into tears at the retelling. "I don't know what I would do, I don't know if I have that."

Clark, seeing no way around it, drove her minivan to Walmart and bought not just milk, but extra baby wipes and a frozen pizza. "I seen her," says the cashier, "I seen her standing in line, feeding the baby them colored Goldfish and I thought, my God, what a woman."

Was it easy? She says it wasn't. "The waistband of these pants is starting to really dig in, you know? And it's just... parking is not easy. It's not, we all know that. And it's like 11 in the morning, so I'm breakfast hungry but McDonald's is already on the lunch menu, and I don't, you know, want a cheeseburger for breakfast..." Eyewitnesses watched her load the sacks into her Toyota Sienna, wincing in the cold wind.  When we asked her about her achievements despite the odds, she answers with a chuckle, "Listen: I'm no hero. I just did what anybody would do," she says, humble even in the face of staggering accomplishment. "I don't want to answer to my kids someday, say, well, it was hard, so I didn't do it, I didn't get the milk. Now I can say, you know, eat your cereal."

It's a lesson for all of us, a day to eat our cereal and to be our better selves. Thank you, Jessica Clark. Thank you.

I was an old kid. I was a weird kid, bookish and awkward (but hilarious, seriously, I think I was very funny) but I spent most of my time with my parents and their peers. Adults have always made a lot of sense to me, not so busy with chasing each other with bugs or making extensive lists of “Boys Who Are Cute”. I had a list, but Reagan was on there… anyway. I was odd. I am odd.

I tell people, “I have always been 40,” and that is not true in a numerical sense, although 40 seems to be gaining speed as I cruise through my 30s. But I was an old soul and then I got married young and tragedy hit repeatedly through my 20s and now I am old.

So I’m just going to be old here and say something to all you youngsters, and that is, none of us know what we’re talking about. We’re all winging it through life, trying to do what we think is right for our kids, for our careers, for our bodies and our relationships, and sometimes we hit gold and something goes right and so we write a book about it, like the formula will work for everyone. It won’t.

I’m not anti-advice. I’m not anti-parenting books or nutritional advice or relationship tips. It’s just that they mean less, the older I get and the more I realize we’re all screwed up a little bit and there’s no cure. You know what I mean? There was only one perfect guy and His book is a little vague about vaccinations.

I’m gonna dish out some advice, since that is the thing to do: love what you’re passionate about, teach from what you’ve learned, and give grace to everyone else to learn, too. Takes all kinds, y’all. Your life will be much easier if you are not offended by the way other people live their lives.

So if your friend feeds their child only jelly beans and they sleep hanging upside down like sloths and all of their clothing is made from foil, but they seem happy and healthy, maybe just bless them on their journey and love them for their weird selves and don’t try to fix them.

And get a haircut and a real job, ya darn kids.  

I've had the revelation lately that maybe Doubting Thomas gets a bad rap. I think he and I could have a slightly cynical conversation over a couple of pots of tea and both get up encouraged. See, I have an easy faith in God, I feel like I get the basics of His heart (like 1/gajillionth of His heart), that He loves us and He weeps with us and rejoices with us and so on. What I don't have a lot of faith in is how much control we have over the events in our lives, how prayer affects that, how "faith" affects that. Lots of questions there. So I kind of have a "Won't hurt to ask" policy, which anybody with big that-leg-is-gonna-grow-back-on faith would find seriously lacking.

So even during this horrible trial with R2, I was doing what the doctors said to do and asking, in my deepest heart, in the place in my heart where my first baby has his rooms and boxes, if something could change. I never expected anything to change. People around me had higher hopes, greater faith, maybe. I didn't mind that. I just had the facts and my desperate hopes.

And we've gotten some kind of miracle. I can't call it something else, the neurologist can't even call it something else. We sat in a circle in his office, the MOG and I, R2, and the neurologist, and we all laughed because it doesn't make any sense, but he is not dying, not now. He's still broken, but this threat has passed, and it seems like further recovery is underway. There is no way to know what the future holds. We're definitely more aware of his fragility than ever before. You better believe we are relishing these days.

So, how do I feel, people have been asking. I never feel like I feel appropriately. Like, I should just be ecstatic, out of my mind excited but I'm a little numb, like an observer watching a really great movie. I can tell I'm deeply relieved, that most of the weight and tension of the last 4 months has lifted, but so much of the heavy and the deep and sad has come to live with me, and so the joyful and the thankful still has that weighty undertone, there is no giddiness. I'm weighty with gladness. This has been the Narcissist Hour. Same time, same channel tomorrow.

So Thomas, in the Bible, for those of you less familiar with ol' Tom, was a disciple who wouldn't believe that Jesus was Himself, resurrected, until he could touch the crucifixion scars in Jesus' palms. I've always given Thomas a little bit of a side-eye, but now I think maybe Tom had been through quite a bit, and maybe the unpredictability and the loss just made him a little slower to catch on to the miraculous. It gives me a lot of comfort that that hesitation didn't seem to hurt Jesus' feelings at all. It gives me a lot of comfort that Jesus is really really familiar with our weakness and our humanity and He is not shaken by our unbelief, He just keeps doing what He does. It makes me feel like I can come close to Him with my questions and my fear and my immaturity and it's okay, because He likes me and He's not afraid of the work. A lot of comfort.

If you follow us on other social networks, then you probably already know what I am going to say. Kate Middleton can rock a hat. I kid, but that's true. What I'm actually referring to is the amazing progress we are seeing in R2.

If you haven't followed the whole story, I'll sum up. Our special needs son was diagnosed with a neurodegenerative disease a few months ago, after an extended period of losing functions, losing his ability to sit or stand without support, losing control of much of his muscular system and eventually refusing even to be spoon fed. In February his situation was so severe that our medical support recommended we call in end-of-life specialists and set up hospice care for the home. I can't even go back to the agony of those weeks. Every morning I would walk into his room, trying to brace myself in case he had left us during the night. He was so deeply tired and in many ways, we felt like he had given up on this life, had been given a glimpse of heaven and was ready to leave us.

We tried our best to release him, to explain the situation to the little kids and to tell him that we'd be okay, that he could go if he needed to go. We braced ourselves for weeks or months. And then something changed. It's spiritual, it's physical, it's all of it. He started trying again.

We went from forcing him to drink smoothies from squeeze packs to using scarfs and wrap blankets to hold him in an upright position so we could spoonfeed him avocados and bananas, with another band holding his head up since he could no longer do that, to now, sitting independently in a chair, eating anything we feed him and even experimenting with feeding himself a bite or two with much prompting.  He is walking, he is sitting up all of the time, he is so happy.

The most exciting thing to me is the vocalizing. R2 talked as a baby and then lost that function gradually over the years, about 5 years ago he stopped entirely. This week he has started trying to speak again. He echoes some words, (his first words were "thank you") but a lot of what he is doing is just trying his voice, moans, giggles and whispers. And he is goofy almost all the time. It has been so long since he was happy that I forgot his real personality. Isn't that crazy? Anyway, he is "making jokes", vocalizing these long tones and then laughing. Brynn says he sounds like the whale language from Finding Nemo. :D

I, despite loving Jesus deeply and being raised in church and Christian school (or maybe because of those things), am always hesitant to use churchy language or "Christianese" on my blog, or in my life. I can't get away from the miraculous elements here, though, y'all. I don't know what tomorrow will look like, I don't know what any of this means for the long term, but I know we're seeing miracles today. All I asked for was more time, and God is giving me back my son. It's so huge that I can't wrap my mind around it. I can't even get super emotional yet because I am just trying to process what is happening. To go from fully releasing him to the Lord to realizing that he might have a long life, and be even better and stronger than before, that's a lot to work through. I am so thankful, so amazed, so deeply grateful. Thank you all for continuing to pray for him, for us.

Here's a little video R1 and R2 made:
http://www.facebook.com/photo.php?v=10151471617613416.

"Thank you for calling Bank of Stupidity, we appreciate your call. For your convenience, we will use an automated hypersensitive robot female to mishear you. Is that okay?"
"NO."
"I'm sorry, did you say Billing? Transferring you now."
"I..." 
"I'm sorry, I didn't understand that. Please choose from the following options, 'Saturday', 'German' or 'Obstetrician'."
"CUSTOMER SERVICE"
"Okay, you'd like to speak to Customer Service. Is that right?"
"YES. Please for the love of God..."
"Did you say 'Pork Chops'? Your approximate wait time is 94 minutes. Please be patient, you are so important to us. We at Bank of Stupidity live for the sound of your soft breathing. Our customer service representatives are eager to assist you, manic to assist you. Please do not hang up, you are the one bright light in this dismal existence. Our customer service representatives consider you the wind beneath-"
"Mama?" 
"I'm sorry, I didn't understand that. Would you like to be redirected to a representative from India?"
"Maama. Maaaaaaaaama. Maaaaaaa-"
"NO"
"MAAAAAAAAA-"
"Transferring you to India now. Your hold time is 94 minutes. Please remember your ticket number 'FSFBV1DDC' so you can repeat it to your representative who knows 14 English words."
(soft weeping)
"Did you say Customer Service? Please hold. Our customer service representatives are talking to someone they have no affection for while they wait to talk to you. Please enjoy this collection of hit Slayer songs played on harpsichord and triangle while you wait. Your hold time is 106 minutes."

My original plan was to not have kids. I was an ambitious 7 year old, and I knew that being the first female President was going to be consuming enough without throwing in a family. Then later, when the hubs and I simultaneously reached the age of accountability and got married, we agreed that ministry would be easier without kids. I tell you what, nobody knows more than a couple of 18 year olds with wedding rings and a bank account.

A couple of years later we found out we were pregnant (well, I was) and threw that whole plan out, gleefully. Then I had R2, the twins, and then Toby. Every pregnancy, I was sure I was having a girl, and I would name that girl Caitlyn Bryn. So by the time I got pregnant with my 5th baby, I had decided that I only had boys and I was trying to figure out how to name my son after Smith Wigglesworth without naming him Smith Wigglesworth. AND THEN IT WAS A GIRL. Let me tell you how long it took me to decide to name her Brynn. No long, that's how long. 8 years of writing down that name and I finally had my shot. We changed the other name to Kathryn in honor of Kathryn Kuhlman, but Brynn stuck.

I made it to 29 weeks with Brynn, and it was a hard fight. As soon as I had her in my hands, everything changed. There is something so elementally different about a girl, and not just the stereotypical things, although she is awfully stereotypical. There is a fragility in Brynn, a thin veil between her skin and the eternal. She feels, she sees, she knows. It's a strange quality, this iron core of her will and intentions wrapped in an eggshell of passion and emotion and depth. She's beautiful and compassionate and stubborn and sweet.

She is so made of strength. When she was born she was 2 lbs, 12 oz and not much more than a foot long, but she exuded strength. I leaned on that strength for the 2 months it took her to grow enough to come home and then I leaned on it when she would push her tiny frame to crawl, to walk. Now I run headfirst into that strength on a daily basis as she exerts her independence, which I am equally proud of and terrified by. Her humor and her confidence are a strength to me. She gives me such joy.

Last night I crawled up in her bunk to have our ceremonial "last-night-you-are-5" talk, and she told me all the things she planned on doing when she was six. At the top of the list was being much, much taller. She giggled and she planned, and I laid beside her, soaking in the end of five, watching her talk and knowing that she is changing, she is growing.

Whoever she will be, whatever she will do, I am confident in who she is. What a gift my girl is to me. 

I used to spend my days counting down... days still summer, days till school began, till I graduated, till my wedding... and then one day my pastor's wife reminded me that I was discounting today, that all my anticipation was robbing me of the gift of today. Or, maybe even more eloquently, what a salty roommate told one of my brother-in-laws as they worked their way through rehab, "If you got one foot in yesterday, and one foot in tomorrow, you're gonna end up peeing on today."

And then I had a baby no one expected to live, and the countdowns came from everywhere. 24 weeks, they said, 72 hours, the first month, the next hour is crucial. I learned quickly to live in the moment, to let today's worries be enough. The future was an unknown, but today had enough work to keep me busy. So I learned. It served me well, through more babies and bedrests and developmental delays and tours and now it is crucial.

Because now I spend my days and nights in a waiting room. There is no urgency to attend to normal tasks, everything routine seems extraneous and maybe even silly. It seems very important to be in the same room with my baby, to be able to see him breathing and eating and crying and smiling. Sometimes it seems normal in the waiting room, like everything is not wrong, and we live out our days and we talk and we forget for a moment that we are waiting, until we are reminded that everything, everything is temporary. Sometimes that reality hits like solid punch to the stomach, other times it is a tiny gasp of surprise, a bittersweet heartache.

All I know is, without a miracle, my son is on a course to leave this waiting room, this lobby, to be born into what is real. Months, years, we don't know. Today, tomorrow, what will be, we don't know. Somehow he, with his broken body and his damaged brain, understands far deeper realities than I do. On his worst days, talk of heaven will bring out bright eyes from him and his infectious smile, even as we cry.

We're asking for a miracle, or at least for more time. Please, more time. What is becoming increasingly real is our surroundings, our waiting room for the real world. It is undeniable. So for now, for today, we cling to what we know, to love, to waiting, together.

Inside info: I almost always write my blog title last. I ramble through 300 words or so and then after I have figured out what it was that I ended up saying, I brainstorm for a title that will make people interested in reading it. Sometimes Toby offers impractical suggestions for titles, because his kind of nerdy jokes are impractical, unless you, too, are a nerdy joker. Demographics suggest that many of you are, so maybe I should be taking more input from the Tobester. But I digress.

This time I wrote the title first and was reminded of the initially interesting and historical "Keep Calm and Carry On" posters, which have become a scourge on the face of humanity and have made Pinterest even more of a source of rage for me. If you ever think about repinning "Keep Calm and Read Twilight", then I don't know if I have anything else to say to you. I just... our relationship is threatened, I'll say that.

Anyway, back to this blog post. The other night, we went to see the neurologist about R2 and it was awful, really bad. It wasn't new information, per se, but it felt like final information in a lot of ways, and knowing that brought up more questions than answers about all kinds of difficult and completely hypothetical things. Plus, the MOG and I process completely differently, so I had my emotional collapse in the car and built a guest bedroom for a nurse/relative in my head and tried to plan end-of-life-stuff and he was in a totally different place, feeling hopeful that we may be able to ease some symptoms after we get all the dietary and med testing, having already processed the longterm weeks ago. It's so complicated, being married to the opposite gender and trying to grieve preemptively, separately and together-ly. It is complicated. We love each other, we're in this together, but our different-ness has never been more obvious.

So we got home and Toby was laying on the couch, flushed with fever. The other little kids quickly followed suit, Brynn waking up at 3 am hallucinating about her bed dropping down and, later, while she sat on the potty, screaming, "The potty is wobbling, it's wobbling, OH DEAR!", which, come on, is the cutest thing you ever heard. It was almost a relief, if you can believe it, to be dealing with normal kids being sick in a normal way, responding appropriately to fever-reducers, vocalizing loudly about their needs. One of the hard things about R2's illness is that he is completely unable to tell us what hurts, what he wants, etc. It's nightmarish, thinking about how he must feel, unable to even communicate that he is thirsty. He has a few signs and his ipad but currently, we are only able to operate on process of elimination, and that is hard.

This morning, Tristan had a febrile seizure, which was scary because none of my "typical" kids have ever had a seizure, but even with the fear, I was so aware of exactly what was going on and that the most likely outcome was a totally normal Trissy in a short amount of time. So we went to the pediatrician and multiple nurses came in to hold Brynn down for a throat swab, which is sad but also, super impressive, dynamite in small packages and whatnot. Sure enough, they have the flu. So we're trying to keep them quarantined in the sunroom, bribing them with unlimited TV and comfy blankets, and trying to keep them away from R2.

After a bit, when things keep getting bad and then they get bad-der, it starts to get just slightly funny. Or possibly, I am going nuts. Whatever the case, we are carrying on.