Monday, January 28, 2013

You guys probably saw this post coming, from the woman who turned Vacation Bible School into some kind of angst-ridden rite of passage, but Toby and Brynn started school today, so get out your hankies, or a wad of Great Value 1-ply Toilet Tissue or whatever.

Last night Toby came in late after a daddy-date, and I held him in the chair in his room. It's getting more complicated to hang on to him with all the arms and legs and his tallness, but we found a way and he snuggled up to me, just like he did as a infant, back when his very presence reminded me that God hears prayers. "Tomorrow," I said, "You will go to big boy school. And that's different for us, but you are going to really like it." He turned his head in, too tired to be a brave big kid and whispered, "I don't want to go to big-boy school, I want to stay with you..." And that was the moment, the moment when I let go with arms that ache to hold on, when I have to fight every instinct that says, "Hold on, hold on!" and force myself to send him, to send them away from me and towards who they are becoming. "You're going to love it," I stammered, lying to myself and telling him the truth.

This morning, I walked in with them after promising Toby I would stay as long as he needed me. Surprisingly it was Brynn that got shy and nervous. I stood in the corner for a minute while they got settled, Toby completely disregarding "school etiquette" and chatting up the boys around him. I am grateful for this school taking my kids mid-year and being willing to take on unschooled kids, literally and figuratively. I worked my way to the door, so proud of my children for their adaptability and willingness to embrace change, and at the same time, feeling a tearing inside, a separation from the babies I fought to carry, fought to keep alive, fought to teach joy and contentment, compassion. I am fighting now to give them what they need, to give R2 what he needs, to embrace this season and to be joyful and content regardless of the circumstances.

I cried all the way home, ugly cried. I cried because my first baby is so, so sick, and because my plans have changed, and because my life is out of control, and because God is good but He's not obedient. I cried because this is not what I wanted. Then I stopped crying and bought baby wipes and changed some diapers and accepted it. It's not what I asked for but it is worth it, and I know God is with us. Life is still good, God is still good. I am so, so blessed, and I will be thankful.

(Oh, and they loved it and asked if they can please go back tomorrow)

Sunday, January 27, 2013

Several Fridays ago, we were given the devastating news that our son R2 (Richy II) is in a process of degeneration as a result of an unidentified genetic disorder. We've been the recipient of bad news plenty of times before, but this is the first time since he was a baby that doctors have not given us any hope, so we were totally shocked and brokenhearted. Some close friends texted me for an update and I just gave the unvarnished report, too shellshocked to make it "nice". Within hours they had organized a meal train and unleashed armies of prayer and practical help for us. I described them to someone as "The committee of friends that is helping my life".

Well. The committee has been busy, folks. Last week we were sent to Bethel in California for a time of prayer and ministry, and then they arranged for 2 days at a resort/waterpark with all of our kids. A vacation with children is always equally beautiful and exhausting, but this time the committee had arranged for helpers to come and help with the kids during the day so we actually had time to spend with each kid. It was so good for my mommy heart, especially since school is starting Monday.

Little did I know that they were also getting us out of the way. ;) We know now that a secret group had collected and fundraised to renovate and totally redecorate our home. Dozens of volunteers came and donated hours and hours of hard work, renovating the majority of 2000 square feet in less than a week. Many of the people who gave countless hours didn't even know us, and we are so deeply moved by their love for God and for us.

When we walked in, there were people with video cameras, so I'm sure there will be an edited video soon. I wish we had been more dramatic in our responses, we mostly walked around in shock, saying the word "Amazing" too much. We had had a particularly discouraging day with R2 and to walk in to this beauty and generosity was stunning, humbling, amazing, to use our favorite word. Later, the kids came in and saw it all, and R2 showed us with his eyes that he loved his Toy Story room, designed for him. The Committee hid back in the hallway and wept while they watched the MOG walk him around to see all the new things.

We woke up this morning in a beautiful new house. We're still reeling, taking it all in. People that we know and people that we have never met worked morning and night for a week to create this gorgeous, peaceful space. There's no way we can thank anyone enough for all of this, but we want to try. Thank you for making our home so warm, so welcoming and so peaceful. We are walking through the Valley of the shadow, and your generosity has blessed us so deeply. We are surrounded, we are loved. R2 is loved. It means so much, more than I might be ever able to say.

Here's a series of short vlogs to walk you through the house. It should play automatically through all 6 short videos, although it seems to pause for 10 seconds between each individual vid. Wait for it, I'm coming back. Unless it's the 6th video, then it's not a fake hangup.

Monday, January 21, 2013

We've been in California for a few days and have received some beautiful ministry, but R2 is really struggling during the hours that no one is praying for him, and we are wearing ourselves out trying to anticipate his needs and entertain him, to keep the panic and the anger at bay. By the time lunchtime rolled around today, the MOG and I were a little punch-drunk. All of our songs and animal noises were falling on very angry little ears, and we knew leaving was inevitable and it did not appear that R2 was going to get any more open to the idea. So we put him in the car and drove to a restaurant, giddy at the thought of being outside our rooms and enjoying some highly-rated Mexican food.

We piled into the booth and got him settled with a pillow, talking in careful code about how we were going to manage getting him to eat something, since he's been living on a diet of yogurt and Ensure for like 3 days now. All was calm and bright for a little while. I ordered refried beans but he was getting wound up, and we could tell his frustration was on the verge of boiling over.

There's this one second where you know the screaming is coming and the whole world slows down and zooms in and you just can't get there in time. And the screaming these days is from down deep, it's a horrible bloodcurdling scream that shatters the peace like a hammer. We're not rookies to having an abnormal child, but we're new to this immobility stuff, to having to lift him and move him speedily without any cooperation from him. So we were panicking, covering his mouth, trying to calm him and talk to him and stop the scene, but he was done. For whatever reason, pain or hunger or sheer frustration at being unable to communicate, he was done. After what felt like a year but was probably a minute, R1 had wrestled him from the booth and out of the restaurant, shrieking, and I sat alone with a table full of food and a room full of customers who didn't know where to look.

There's a tendency to fight continual guilt and failure when you have a special needs kid. I feel like I should have been smarter, should have predicted it, should have gone to a drive through, should have had the tools to stop him. Should have had the tools to fix him, to fix the broken places. If I were right, he would be right, it seems. It's not true or logical, but it's real.

So he and his daddy leaned against the car in the parking lot, emotionally and physically spent, while I tried to gather the humiliation and the deep sadness of losing a child piece by piece.  The waiter came to me, put his hand on my shoulder and offered in broken English, "It's okay," he said. "You no worry." A moment later he brought the check and touched my shoulder again. "You no worry," he offers gently, "Love your son. I have one of these." And with that, I wasn't sick and embarrassed and alone in a room of strangers anymore, because I was offered mercy by a comrade-in-arms. "Thank you," I stuttered, unable to articulate the relief.

With the gift of his empathy, I walked to the car with new grace. This is hard, it is a valley, but I am continually reminded that we are not alone.

Saturday, January 19, 2013

Disclaimer: the following post is going to contain a ridiculous amount of exaggerations and embellishments. It’s all for the humor, pals. < /disclaimer >.

I like flying, I tell myself, in that way that you tell a 4 year they like broccoli. “I do?” they ask, and then they try it and they hate it and the seeds of betrayal are sown. I like flying, I say, but in reality, the only thing I like about flying is going somewhere, and getting there fast. I happen to know for a fact or possible hoax that more people are killed every year by donkeys than in plane crashes, but even with that reassuring statistic, I am just not logically able to justify climbing into a giant metal tube and zooming off into the ozone with only the wind holding me up. “Egads!” maybe you’re saying, “Everything in that sentence is not accurate!” Listen, as far as I know, that’s the way it basically goes. So, for me, with my level of understanding, this is crazy town up here.

At this moment I am 1 jillion feet above earth, traveling at a rate of about 700 miles an hour, held in space and time by wind currents and a 70’s seat belt. It’s not that I’m actually afraid, it’s more that it just seems like an absurd risk. Still, when it’s a tossup between a couple of days in a minivan or a couple of hours in a cosmic pencil case, I guess I’m cool with taking the risk. It’s mostly the takeoff and landing that bother me, that tenuous moment when the pilot has to wonder if he’ll pull it off again, or if gravity will finally have its revenge. During those moments, I just close my eyes and think, I am in a van, a bumpy van. I am in a boat that is sailing merrily along and TIPPING PERILOUSLY ON ITS SIDE AM I RIGHT WITH GOD oh, I am in a bus, a bus.

I think about lots of things up here, though. Maybe it’s the proximity to God that makes me reflective, but I think about things. Like the lavatory. In a plane, I know that logically, there is some kind of tank that contains the what-not, and that when you flush, the toilet does not actually open up and reveal the sky. Still, I think about it every time, about being sucked out of the plane via the lavatory receptacle, if you catch my drift. I’m deep, I won’t apologize for that.

Another mystery of life and humanity is the SkyMall catalog, which I love deeply. Someday, when my books have become smash hits and then movies, or maybe if I invent a diaper and milk drive-through, like Starbucks, only useful and become fabulously wealthy, then maybe I will buy things like a Massage Helmet , in chrome or fuschia, or a Hug Sofa, that is shaped like a giant supine teddy bear and wraps you in its furry sofa arms. BTW, I invented those things, just now while I was typing. But they would totally work in a SkyMall. Or maybe some ClimateGlasses, where there is a superimposed image of your favorite landscape, like mountains or a beach, so you can look for the Great Value Nasal Tissues with a lovely scene in the horizon. I could go on all day, I could. Especially because typing all this has almost made me forget that I am a pawn in a science experiment to see if humanity can be suspended in midair and propelled from location to location at a staggering pace.

30 minutes to landing. All is well, all is well, all will be well. 

Friday, January 18, 2013

The plan is to leave for California so early tomorrow that I technically would refer to it as "today". There's a healthy to-do list in my head, which typically renders me motionless. Today is no exception. I have to do all the things! I think, so I sit down and refresh Facebook over and over again. Eventually something breaks the logjam and I do things on the list, a lot of the things, until the last minute and it's so stressful and it didn't have to be, if I would have made a plan and thought logically. But you know, whatever.

Yesterday we took the babies, who are still going to be referred to as "the babies" when they are middle-aged, to the school they'll be attending for a tour. We've been talking it through the last few days, the change of plans and whatnot, and I realized I might have laid it on a little thick during some homeschool battles, because there was a lot of concern about hours and hours of school, and hours of sitting down and such. "How long are we talking about?" Toby asked, already mid-scowl. "4 hours!" I say brightly, like all of this is my idea. "Home after lunch!" He considers it for a moment, weighing the amount of Mario time he's going to be trading. "No," he concludes, "No, I don't think I can do that." Which is exactly what I have been saying about this whole plan, but it is the right plan.

During the tour, the kids listened while we viewed a classroom and then talked philosophy, policy and tuition. Somewhere in there, a band of small females streamed past and Brynn just went with them, exactly like a social female 5 year old would, I think. Other parties that were with us were not interested in recess. I, being intuitive to the emotional dynamics of mother and son, and understanding that we are on the brink of a natural and necessary separation, gave Toby the floor. "How do you feel about all of this?" we asked him. "Anything you'd like to know?" Toby dug deep. "Do you serve food here?" he asked. They don't, but he is able to bring his own snack. "Okay." he says, and that's it. School accepted. Brynn came in after recess, flushed and surrounded by people.

Sometimes I think maybe they won't be messed up.

They'll start after this California trip, and I'm excited. I'm terrified but excited.

On the topic of California, we're taking Richy to be prayed for by a church that has a real heart for physical healing and, while we are weak in faith, we're still asking God to heal him. Please join us in asking for a miracle.

Wednesday, January 16, 2013

One of the things I've been trying to figure out during all these medical happenings is how to parent my other 3 children. To be fair, I've been trying to figure out how to parent my children for 13.5 years, and still, faking it. I would say that somebody should write a guidebook but everybody has and I hate them all. Not the people, mind you, but the books. Nobody around here does anything like the books consistently. They walk late and they talk early, and sometimes they don't talk at all. They teach themselves to read but some could only be defined as "toilet-trained" by the very loosest of standards, like the New York Subway Musician Standard of Toilet Training. They don't say "I hate you," but they  occasionally use an expletive they read on a Mario and Luigi message board, when they are very, very frustrated at a computer. They eat everything, which is great because they aren't picky but horrifying when it is a french fry on the floor at the movies. That's right, a french fry. They don't fall asleep at night until the wee hours, and they fall asleep in mid-play, in the middle of the floor. "All of this," you say, "is not the fault of the child, it is poor parenting." And maybe you're right. I will be happy to read your parenting book, as soon as you have more than one child. (exaggerated winky face)

One thing there is never a shortage of is or are parenting horror stories, secondhand ones. "Oh, yeah," they say, half-whispering, "they adopted that kid and sure enough, everybody got rabies." or "Well, I heard that Son of Sam killer was formula-fed. Just saying..." So I am going into what might be a prolonged illness with R2, hearing echoes in my head of grownups saying that the first time they considered selling meth was when their parents let them play video games all day to keep them out of the way during a crisis. This is it, I think, this is where it goes off the rails and their relatively happy childhood gets complicated. In reality, they have grown up this far with a very disabled brother, a dad who traveled half the time, and a mom who has the top half of a face and the bottom half is a computer screen, so maybe it wasn't all that idyllic. And I know we're good parents, I'm mostly kidding around. But I do worry, it's kinda in the job description.

For the first time ever, I'm strongly considering putting Toby and Brynn in school, in a small private school, if it is right and we can work out the details. Expect some insanely emo blog entries about letting go and rivers of tears and such if that happens, because I have never claimed to be good at raising and releasing. If I could make them stay 5 forever, and it wasn't some sick scientific experiment that spawned countless made for TV movies, I would. I am crazy about 5 year olds. This is one of those times when I'm having to let go of a dream, maybe for a season, maybe just a season, because life has shifted directions and I have to keep up. Rolling with the punches, they call it. I could spend some time wailing, "This is not what I wanted!" and maybe I will, but really, the sooner I adapt, the better for everybody.

In the end, however this goes, I know that I love my kids and somehow, we're all gonna be okay. OR, we will make a killing selling the movie rights to Brynn's tell-all, if she ever learns how to spell.

Monday, January 14, 2013

If anybody had said to me, 14 years ago, hey, this is what you will have to do to have kids and this is how it will all go down, with the bedrests and the sirens and the hospitals and the teensy tiny hard-wired babies and the paperwork and the emotions, I mighta been like "90's catchphrase!" with my Meg Ryan wannabe haircut. I'm glad nobody told me, though, because nobody could have told me how great it would be, before and after and even during storms.

That's a thing about trials. If it wasn't good, what you have, then it wouldn't be so painful to fight for it. Grieving is evidence of goodness. It's all mixed together, all the laughing and crying and fighting and pleading and dancing, all of it. I wouldn't trade it, as crazy as that sounds. It's all part of this insanely loud, beautiful life that God gave me as a gift.

In Ecclesiastes when Solomon whines about times and seasons.... (And when I get to heaven, maybe Solomon's gonna be like, "Called me a whiner, eh?" and I'll be all like, "Are you Canadian?" and also I might be like, "I bet your 3000 wives never got to write a whole book of complaints for the world to read for all of eternity..." or something like that, and then I'll notice Mother Teresa giving me the "eye" and I'll probably get kinda embarrassed if things can even go that way up there) But there Solomon is, "wisest man in history", with his women and his money and his brains, and he's bummed, talking about seasons. The thing is, sometimes seasons are all jumbled together. I mean, time to weep, time to laugh, all of that. Life doesn't slow down so you can make a transition, you just tumble around sometimes like a human in a giant dryer, smacking into the funny and the profane and the sacred and the agony, all of it.

So this is it, this is what we get. It's a blip, a nanosecond on the timeline of eternity and somehow so full of richness. We get to love, to live. We get to. 

Wednesday, January 9, 2013

I have been trying to write a blog entry for a couple of days, but during the day, I am distracted on a moment-by-moment basis and lose my train of thought and when I come back to my computer, the thought is gone. I read my partial posts and think, "When was that funny? Was that funny back before I heard Tristan eating yogurt out of the garbage? Because it is not funny now." And then that post gets saved as a draft, because my hoarding tendencies go beyond baby clothes and now I hoard words too.

So now it is evening, and I wouldn't call my house quiet, since there is a stream of worship music coming from the MOG's office with the occasional diversion to a Michael Jackson track, like he has a playlist called "Early Vineyard and MJ" which is probably not true, because his songlists are all called things like WorshipSoak1 and FINALalbumfinalcopymaster2. Also Tristan is singing something to the tune of Jingle Bells in his crib. So it's not quiet but it's relatively calm.

How are things going? Well, they're emotional. There are moments, late at night when the house is asleep, that the what-ifs and the realities hit like a sucker punch and we're too tired to be brave and so we crash. There are moments during the day where R2 looks peaceful and happy and we forget for a moment that he is changing. The small people are still hilarious and somewhat oblivious and selfish and compassionate and hungry, always hungry.

For me, I walk through my days gingerly, feeling kind-of bruised, like I had a little tussle with a tornado and I know it could get me again at any moment. I try to walk the line between borrowing trouble and dealing with today. I ask for miracles, make sandwiches.

I have a soul-deep understanding, so, so deep that these days will come to be the most precious days of my life, whether he is healed or he is not. We are living love and gratitude, because we have the gift of today. I didn't see that last week and I think I do now.

We have been surrounded with kindness, with prayers and support and food and practical help. I worry that I'm not saying thank you enough, that I'm not expressing how grateful we are. We're in a whirlwind of questions and changes and answers and in the midst, great, great kindness and we are so thankful for all of you.

Monday, January 7, 2013

As most of you know, Richy II (R2) was hospitalized in late November, after a week or more of not wanting to sit up or stand and showing signs of great discomfort and pain any time he was upright. Initially the doctor treated him for constipation, but his symptoms continued. We spent 2 weeks undergoing rigorous testing, CT scans, X-rays, extensive bloodwork and an endoscopy and colonoscopy, among other things. All of his tests came back negative, meaning they found nothing physically wrong to explain his pain and lethargy.

When the staff could find no cause and were at a blank for any further testing to be done, we asked to be sent home to attempt to bring him to some kind of recovery at home, assuming we were dealing with a recovery process from some sort of healed injury. After a few weeks at home, his symptoms grew a little worse. Although we are able to get him to sit up briefly for meals, he seems to have lost the memory of how to feed himself and has to be spoon-fed, and his core strength is so weak that is difficult to keep him upright for the amount of time he needs to consume a good amount of food. As a result, we are supplementing his diet heavily with nutritional shakes. We are able to get him to walk with assistance for a few minutes every day, but he usually cries and seems to be in pain and needs a lot of physical support to remain upright. 

On Friday we met with his longtime pediatrician for her further recommendations. She reminded us that she and Richy’s neurologist have long suspected that Richy’s disabilities and even physical features show signs of a genetic disorder. Given his loss of functional speech gradually since the age of 3, and his progressive loss of other functions, it is their determination that we are facing a degenerative genetic disorder that they do not expect him to recover from. There are countless symptoms to back this diagnosis, now that we have been faced with it. They and the other specialists we have been working with feel that there is nothing more for them to try.

So what does it mean? Let me start by saying we believe that God can heal, and we will ask Him to heal. While we ask and we wait, we will deal with the practical and medical realities. Since this disorder is not known, there is no specific time frame or “schedule”. We are seeing some rapid decline in his will to be active in any way, and he seems to be very, very tired, which is greatly concerning to us.

What we do know is that our timeline with Richy, which we always thought ended with us, very old, changing diapers on a very old man, has been drastically shortened. We will get more finite ideas of what to expect, we hope, in further consultations with the neurologist. Our estimate based on our understanding is that we might have a year, or a few years left to spend with him.  We are aware that since we are dealing with the human brain, that timeline could be further shortened without warning, or that he could unexpectedly regain some function and gain time.

It’s our intention to contend for the most time possible, for the best life. We are scheduled this week for a wheelchair evaluation and will be outfitted with the best option for his specific needs. Someone has paid for us to fly to a church in California that has seen a staggering number of physical healings, others are working to see if we can get into St. Jude’s or the Mayo Clinic for more examinations, and we are planning to get second and third and fourth opinions. We have a lot of options to try, and our heart is to love and to live fully, however this goes.

We are so thankful for the outpouring of support and prayers that many have shown in the last several days. We’re blown away by your generosity and want to assure you that everything you’ve given will be used for travel and expenses to get R2 the best help possible. Thank you from the bottom of our hearts.

A Facebook page has been set up to communicate needs and updates, feel free to join there for the most current information. We ask for your continued prayers.

Wednesday, January 2, 2013

All is not right. There is a very real discord here in this gap between heaven and earth, and it's impossible to ignore anymore. But we keep moving, and eating, and laughing, until it's too much and we're too tired and then the grief and the fear comes like waves and we are down, immersed, drowning, until the grace comes and lifts us out of it, gasping and exhausted. And we lay on the shore of our own pain and try desperately to connect, to hold on to each other, so completely human, and not swipe with weapons of blame and doubt.

And then it's morning, and maybe it will be okay, and life always carries on, always, so there are babies and laundry and bills and we forget, for a minute, that injustice is alive and well in our living room.

And always, always, He is there. I ignore Him, I blame Him, I question Him. I beg Him for answers and I negotiate. His presence hurts more than His absence, or what seems like His absence. I try to earn His comfort and find it despite myself.

So we fight to find our balance, to live and not just survive, to walk through the Valley faithfully. How do you live in the storm without being washed away? How do you cling when the winds are unmerciful? The only comfort is Him, who I know Him to be, because He never lets go. Help my unbelief, You never let go.
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