Sometimes mothers blog about cleaning their houses. I'll admit to feeling perplexed and slightly jealous when I read these entries. We have lived in three houses since we started farming, none particularly tidy (except maybe the one we were borrowing and could only bring a few boxes' worth of possessions to). Though putting away our suitcases last month was a triumph, it didn't result in that room actually being clean for more than a day. I can't blame the special needs parenting, because farming and other things come into it too.
I have a grandma who makes it sound like cleaning your house is the most noble, enjoyable thing in the world. In her eighties she was still telling me how good she felt because she still scrubbed her kitchen floor on her knees every time (I do too, for the record). At her house, the dishes are always done. Mealtimes are the framework for the rest of the schedule. She knows everything that needs to be cleaned, organized, and erranded. She watched neighbor babies or children when needed for 60 years. All the kids around there would come and knock on her door for a cookie. And she seemed, as far as I could tell, absolutely proud and satisfied of her work in a way that I have never seen in someone without wrinkles. Most times when I talk to her by phone, I still hear something about her housekeeping and how it is going with her current health. I hold up her stories and sniff them, hoping that the essence will go into me and make a slight internal change. It does.
On Sunday, it was 80 degrees, and the kids had the most wonderful afternoon. John and Sister painted with tempera paint on the porch. They painted on fingerpainting paper and cardboard boxes. Sister earned two dollars for helping John with the paint, while I worked in the kitchen just off the porch. Do you know how long a little non-walking kid can occupy themselves painting a cardboard box and then lifting it on and off of a bench and studying it from every angle, including crawling up and down the front ramp between each viewing? I didn't either.
After painting, we put last year's wading pool at the bottom of the ramp. With duct tape, we made it useable one more time. Sister had the honor of holding the running hose (and thus the power to annoy and startle John in infinite ways). They spent a long time in the pool, and suddenly I realized that John had missed his resting period. It was so nice to see them absorbed in playing outside.
On Monday, John had a fever again, just a little one. I couldn't take him out, but he was still playing. We started to work on Sister's room. I told John that we would look for the red ball, an important ball from his hammer-ball toy that has never been lost until last week. John watched as I separated trash from toys, going through the room with two big bags. We rotated slowly around the perimeter of the room. Layers of papers, markers, crayons, plastic pieces from toy sets, and clothes had settled geologically onto every surface, somehow all held in their inertia by five flattened pieces of (!) bubble gum that I finally discovered on the wood floor. The bubble gum must have exercised an unintentionally-evil, downward force, causing it to be impossible to pick anything up in that room. When I got three of the lumps up, the spell lifted and the room almost looked like a room again.
We had to stop for the day before we reached the red 40 gallon bucket by the closet.
The next day, John's teacher was sick, and he still felt hot, so back into Sister's room we went with fresh bags. I took anything that was not trash but not easy to put away, and put it in a bag to hide and tackle on another day. The bucket was emptied and shooed outside, and we cleared the closet floor. Outgrown clothes were hid in another bag, for me to wash and give away on another sisterless fever day. I washed the closet floor and John played hiding-in-the-closet.
In about two more days, the room could have be really clean, with a trip for plastic containers and a long book and toy weeding. Instead, with another plan cancellation the next day, we moved on to the living room. I took the Santa, snowman, and nativity scene down. Because the nativity scene is fun to play with, the windowsill where it sat had turned into a surface to coat with other small toys. We came up with more places to look for the red ball, and in doing so put away John's toys. I scrubbed the fly spots off the fan pulls. I took all the little taped cutout toy pictures off the windows that Sister had put up to show Santa, and washed the window where she had written in window marker: "It is almost Christmas! My Christmas spirit is so merry and light!" and more words to Santa. The only thing on the windowsill that would stay was a ceramic pot with a small semi-succulent trailing plant that I received at the baby shower before Sister was born. When she was two or so, I had told the giver by email that the plant was still doing well and the pot hadn't yet been broken. She replied: That the plant and [sister] are doing well is a testament to your loving care of them both. I was surprised. Almost six years later, I remember but don't know if I understand those words.
When Sister came home from school one of those days, she not only found her clean room, but a package from the mail with a few new clothes that actually fit. I turned John over to his dad and invited her to the coffee shop. She must have either been relieved that she was finally getting the right amount of attention, or wondered if her real mom had been abducted by aliens and replaced. We found that the coffee shop was out of business, probably because of the economy. We went to the downtown of our little farm town to find an alternative. The bookstore and ice cream shop had also closed, so we went to a beer-heavy corner grocery to buy a packaged ice cream and we went to the park. Sister played on all the equipment and even came when I told her it was time to go.
Everything was cancelled for three days, and I temporarily pretended to be a normal mother, to both kids. No therapies. No paperwork day. I just cleaned the house, changed John's diapers, fed him, and cooked dinners. I only made four or five bureaucratic phone calls the whole time.
It's funny, because on Sunday, while the kids were still at church and I was home, I called a friend who is a mix of angel and a firm procedure-and-paper support. Not only does she say a lot of funny stuff, she's nice enough to laugh at many of the stories I tell too. I said: "I need someone's permission to discharge John from OT." I explained the situation and why it would benefit our family to take John out of one more therapy, just for a few months. This would mean we would be down to three therapies per week, from six last fall. She listened and gave her blessing. I told her I was almost ready to consider the possibility that there was a way to get caught up with my life constructively, instead of being enraged and underwater about not being caught up. It's funny, because I thought going down to three therapies a week was going to be so good, but instead, the very next morning, I got a taste of what it would be to have no therapies. Don't get me wrong, I find therapy and development fascinating, and I was vigilant in trying to find the right therapists for John--but I'm sorry to say how much I loved it. I'm so tired of fucking fixing everything.
I'm curious what will happen with this trend. Don't ask how much more there is to do around here. It is, or seems, about Mount Denali sized. Comparing supposed obligations to supposed resources, it seems like threading a mountain through the eye of a needle. Lots of people climb Denali and love it. Some don't make it. Would I climb that mountain voluntarily? No, absolutely not. Would I do it if I was set in the middle of it and there was no going down?
I think one of these days something is going to click, and the mountain is going to change. After all, first you see a mountain. Then you see there is no mountain. Then you see it really is just a mountain.
Sunday, March 15, 2009
Sunday, March 8, 2009
Eating rice with words on a moving sidewalk
I got to eat my old words a couple of weeks ago. The aug comm representative whose product line we don't plan to use sent a nice email to check in and see if he could be of service. By hitting reply, he happened to include the text of my very first email to him (to any aug comm rep), where I had described John and asked a lot of questions.
On October 24, 2008, I had written:
If we assume that the 18 months would begin after acquiring a device (and we haven't acquired one yet, so perhaps they would begin around May 7, 2009), that would put him at combining words into phrases on November 7, 2010.
So why John? Why did he get a miracle talking cure?
Or is it a miracle talking cure, if the public can't understand him and I am still translating half of what he says to several intelligent people who he loves?
Communication with the public is undetermined for now. A mommy's translation is high- quality but not omnipresent, including across time. But to me, the team leader, and the vessel of mommy love poured in from some universal source, this talking is substantial and miraculous.
Some people's efforts did set my estimate straight, -er along the way. Just days after I wrote that guess email, a new speech therapist who specialized in aug comm took over John's case. Being both experienced and judgmental, I don't expect too much from younger professionals who don't have kids. But she sat John down with his 9-button talking machine that he had back then, played for a few minutes, and said that he was too smart for the 9-button device and that she would like him to trial a more advanced device that I had coincidentally been reading about the night before. I perked up, like someone who has been camping for days on a nonfunctioning moving sidewalk at the moment when the power comes back on.
The next time we walked in, there was the device, a Vantage Plus, and in three weeks with about nine practice sessions, John was saying some single words. They were the words from the Vantage, by the way. We stayed with this sprinkling of words until a doctor came along and started up another broken moving sidewalk, and soon the words were a torrent.
I was frustrated the past couple of weeks, about not being able to reach Dr. Sidewalk, about the nonanswer I got when I did reach his office, and for a little while, about the 9 months that passed waiting for this amazing treatment. I mentioned it to a mom I know who works in the medical field, and who has no doubt seen a lot of both healing and death. She calmly pointed out, "At least you found it sometime." Oh yeah. 9 months, as opposed to never.
That little sentence was so well delivered that I even got completely out of my progressive disease funk for the time being.
We have found so many answers that have taken John so far. Why us? Is this related to some future assignment for me? I hope so. Or, is the present assignment enough --stop, and accept it honorably.-- ?
I sat down at the computer this morning to order more of the magic maroon gelcaps. John wanted something fun to do, so I gave him his large container full of rice, with scoops, a Jeep and some tiny people to play with. It took a long time to check the products and place the order, but it was okay because John was being so good in the other room with his rice. When I was done I got up and came into the living room. The container was empty. Rice was everywhere: the living room, the kitchen, the bathroom, in every toy, on the piano. A thin layer of white rice was evenly distributed over the entire play area.
I made the involuntary noise that moms make when they discover this sort of thing.
"Who made this mess?"
"Djon!"
"And who is going to clean it up?"
"Mommy!"
"Um, I think you are going to clean it up."
"No. I am gonna make another, big, mess!"
Yeah. Let's make another mess while the sidewalk is still moving.
On October 24, 2008, I had written:
If I was to guess I would guess that within 18 months he would be able to
combine words and that eventually he would have sentence ability and more.
If we assume that the 18 months would begin after acquiring a device (and we haven't acquired one yet, so perhaps they would begin around May 7, 2009), that would put him at combining words into phrases on November 7, 2010.
So why John? Why did he get a miracle talking cure?
Or is it a miracle talking cure, if the public can't understand him and I am still translating half of what he says to several intelligent people who he loves?
Communication with the public is undetermined for now. A mommy's translation is high- quality but not omnipresent, including across time. But to me, the team leader, and the vessel of mommy love poured in from some universal source, this talking is substantial and miraculous.
Some people's efforts did set my estimate straight, -er along the way. Just days after I wrote that guess email, a new speech therapist who specialized in aug comm took over John's case. Being both experienced and judgmental, I don't expect too much from younger professionals who don't have kids. But she sat John down with his 9-button talking machine that he had back then, played for a few minutes, and said that he was too smart for the 9-button device and that she would like him to trial a more advanced device that I had coincidentally been reading about the night before. I perked up, like someone who has been camping for days on a nonfunctioning moving sidewalk at the moment when the power comes back on.
The next time we walked in, there was the device, a Vantage Plus, and in three weeks with about nine practice sessions, John was saying some single words. They were the words from the Vantage, by the way. We stayed with this sprinkling of words until a doctor came along and started up another broken moving sidewalk, and soon the words were a torrent.
I was frustrated the past couple of weeks, about not being able to reach Dr. Sidewalk, about the nonanswer I got when I did reach his office, and for a little while, about the 9 months that passed waiting for this amazing treatment. I mentioned it to a mom I know who works in the medical field, and who has no doubt seen a lot of both healing and death. She calmly pointed out, "At least you found it sometime." Oh yeah. 9 months, as opposed to never.
That little sentence was so well delivered that I even got completely out of my progressive disease funk for the time being.
We have found so many answers that have taken John so far. Why us? Is this related to some future assignment for me? I hope so. Or, is the present assignment enough --stop, and accept it honorably.-- ?
I sat down at the computer this morning to order more of the magic maroon gelcaps. John wanted something fun to do, so I gave him his large container full of rice, with scoops, a Jeep and some tiny people to play with. It took a long time to check the products and place the order, but it was okay because John was being so good in the other room with his rice. When I was done I got up and came into the living room. The container was empty. Rice was everywhere: the living room, the kitchen, the bathroom, in every toy, on the piano. A thin layer of white rice was evenly distributed over the entire play area.
I made the involuntary noise that moms make when they discover this sort of thing.
"Who made this mess?"
"Djon!"
"And who is going to clean it up?"
"Mommy!"
"Um, I think you are going to clean it up."
"No. I am gonna make another, big, mess!"
Yeah. Let's make another mess while the sidewalk is still moving.
Friday, March 6, 2009
Reading too much?
How do you know when you have been reading too much "special needs" material?
1. I was looking through the mail and saw a solicitation from an environmental organization:
Join now and get your FREE BIPOLAR TEEN!
2. This is what I thought I read in review of a book of collected literature by parents of special needs children, so not everyday advice, but literary-type stuff:
"It is a must buy book for anyone who [...] transports young people with disabilities."
I can only see a minority of bus drivers enjoying this type of book.
3. What I first saw in a professional-looking bio on a parent/community website:
"She enjoys watching people eat desserts."
Is that an unusual hobby, or am I out of style?
==================================================
The actual words
1. Free polar bear tote
2. Supports, not transports.
3. She enjoys people-watching and eating desserts.
===============================================
Only the first misread was due to information overload; the other errors were caused by plain old eyestrain.
If you don't find this sort of thing funny, then you haven't spent five minutes at 7:00 each morning for six weeks, with tears streaming down your face, trying not to make a sound so as not to wake up your hosts, while you are laughing so hard reading this book by Richard Lederer.
1. I was looking through the mail and saw a solicitation from an environmental organization:
Join now and get your FREE BIPOLAR TEEN!
2. This is what I thought I read in review of a book of collected literature by parents of special needs children, so not everyday advice, but literary-type stuff:
"It is a must buy book for anyone who [...] transports young people with disabilities."
I can only see a minority of bus drivers enjoying this type of book.
3. What I first saw in a professional-looking bio on a parent/community website:
"She enjoys watching people eat desserts."
Is that an unusual hobby, or am I out of style?
==================================================
The actual words
1. Free polar bear tote
2. Supports, not transports.
3. She enjoys people-watching and eating desserts.
===============================================
Only the first misread was due to information overload; the other errors were caused by plain old eyestrain.
If you don't find this sort of thing funny, then you haven't spent five minutes at 7:00 each morning for six weeks, with tears streaming down your face, trying not to make a sound so as not to wake up your hosts, while you are laughing so hard reading this book by Richard Lederer.
Monday, March 2, 2009
Census
So, I've been wondering who is out there clicking on this blog. Please leave a comment, or if the comment thing isn't working, send an email, and tell me two things:
1. Who are you? Even in one word, like "a mom." Okay, that's two words.
Maybe you are just a guy working for the Department of Defense and your building has such high security that you can't find the restroom and you got to this site by desperately Googling "Where's the john?!"
2. What would you like to see more of on this blog?
I will assemble the results, hopefully artistically, and serve them back to the blog.
1. Who are you? Even in one word, like "a mom." Okay, that's two words.
Maybe you are just a guy working for the Department of Defense and your building has such high security that you can't find the restroom and you got to this site by desperately Googling "Where's the john?!"
2. What would you like to see more of on this blog?
I will assemble the results, hopefully artistically, and serve them back to the blog.
Monday, February 23, 2009
A Maroon Thing that Made John Talk
I've been trying to write this and trying to not write it for days. I have conceptual paresis. I've been chewing some information about John for some time and I can't swallow it. It's against my nature, but what I would like to do is just give up, take the chewed up mouthful outside to some well-prepared soil (never mind that good soil has to be imported in this time and place), and put it in the bottom of a little hole and plant a little flower plant in the hole. Then in about two months, when the flower blooms, I will come back and instead of ever chewing this whole thing anymore, I am just going to sniff it, only for a second.
I know why John gained speech. There are three reasons and this one of them is the biggest. It's a little maroon colored gelcap called coenzyme Q10. And it's kicking my butt.
The fact that John is talking is good. The fact that John is talking from CoQ10 probably indicates that he has a progressive disease.
I was the one who came up with the mitochondrial disease idea, 11 months ago. John's doctors, as far as I know, had him in the "he has X except for a few funny things which don't match but which we never think about except every 6-12 months for 30 minutes" category. But it bothered me. He had these symptoms that were not supposed to be found with his diagnosis. One day, 11 months ago, someone I distantly know posted a note that her somewhat-similar-to-mine son was just diagnosed with an unknown mitochondrial disorder. Because of the somewhat-similarness, I immediately went and looked up this thing that I had never heard of. And I spent about two months in a state of oh boy (after which, by the way, I thought I was fully adjusted). I wrote John's pedi but things happened and we didn't get to meet about it. He referred us to the neurologist, but the wait to get in was so long that John had had his summer weird falling down into the hospital by the time we would have seen him. At the time there was no metabolic doctor in our area for him to see and I didn't even know what that was anyway. But that's all past.
Fast forward to the end of summer, when the city had just acquired a nice new metabolic doctor, and it was almost like we met coming down the bottom of two slides. I always like making a good impression by meeting someone for the first time at 3 PM when I have slept the night before in my clothes, am tired from a day of being blown off by good old boys and praying during weird tests, and am sitting in a kid hospital bed with the rails up nursing my three-year-old. As it should be, though, this doctor met us as gracefully as if we had invited him for tea presented by a full serving staff. And it went normally from there, except that unlike normal doctors, I could understand almost none of what he said the first two hours, and I still haven't gained enough experience with this topic that I can guess what he is going to suggest or even how he will structure our visits. I am very slow to adjust. I had been complaining to other folks for about two years that John had lost a few skills and such, but now that we have a doctor who gets out a pen and says, "Okay, since we last saw you, what skills has he gained and lost?"- when he says that, I can only stammer while my mind goes completely blank.
So, this doctor's quest is to try to figure out if something metabolic is going on with John. We started with a huge quantity of blood tests and detailed interviews and exams. If certain of the tests don't lead anywhere, a next step is a muscle biopsy. They take a big piece of muscle out of his leg, flash freeze it, and hopefully keep it frozen and send it to all sorts of places and do things to it to look at the mitochondria and some other little tiny things.
Last time we met, I was prepared to explain why I had changed my mind and didn't want the muscle biopsy done then. Instead, our doctor suggested the same thing when I was only in the first sentence of my argument. He suggested that we do a trial of CoQ10, which is one of the main medications prescribed for mitochondrial disease. I am not going to explain CoQ10 here. I'll write about it when I am feeling cheerier.
There was one catch to the three month trial, which was important. I couldn't tell John's therapists anything about it. There is a good reason, and that too belongs elsewhere. It sounded pretty easy, and I went out right away and got the stuff.
It is supposed to take some time to get the level built up in your blood. John had only been on it for five days when he had his first therapy session. It was PT. He was acting so strange. He was agreeing to try a large number of new things and enjoying them. This was not my kid.
Two days later he got a bad cold that erased a lot of therapies from our calendar. But you know what happened after that. It started with the molasses cookies and went up to...to where it is now, a beautiful, improbable point that I am tired of trying to describe.
We kept going to therapies and he would do things, like say the therapist's name, or meet his goals, do something he wasn't supposed to be able to do, talk in sentences.... At first it was kind of fun to just smile when the therapists commented on how well he was doing. Then it became outrageous, and finally ridiculous. I was feeling like an idiot, not being able to say anything to them. It was impacting his treatment. For a couple of weeks I told them there was something I couldn't tell them, and finally, I told one.
There was something part of me liked about the blind trial. It was a little like pretending it wasn't happening. I could just be ignorantly happy along with the therapists at how well he was doing. But in another way, I didn't like it, because by four weeks in I knew: his strong positive response to CoQ10, an important ingredient in multiple ministeps of the respiratory chain, pointed to what was wrong. And it was hard to be the one tasked with temporarily hiding our new hint of what was wrong, because, dammit, I'm the mom.
The good news and the bad news. I am sitting on my fingers to keep myself from apologizing for being dramatic. I can apologize later, and maybe later I will even be able to write and say I was all wrong about this. You know, I went to read family stories on the MDA website today and the first one I read was about a boy who was misdiagnosed with a more serious disease than he had. On the other hand, I've suspected this for a year with that mommy gut feeling and have just been waiting around for some doctor to get on board.
But back to being the mom. It's possible, though not certain, that this little experiment could help a large number of patients, and I don't regret trying it in this way. My personality is perfectly suited to extending denial by 9-10 weeks. It was hard because when John was doing the great new things, if I was really completely honest I would have said, "This is killing me. I'm watching him do so well and knowing it means he is going to go downhill."
Things were complicated by the fact that about 7-8 weeks into the trial, we told another doctor about the sudden speech. Through a flurry of excited running about and doctor to doctor talk, I got some secondhand instructions that didn't make sense about the trial, and to get it worked out, I called the metabolic doctor's office three times and never got a return call.
I held out on the original plan for two more weeks (but still not to the end of the 3 month silence period) before telling a second therapist. I was starting to get the explanation into a package that was easier to say. When I got home I felt like I had been punched in the stomach. That made either two-thirds or three-quarters of John's therapists knew now. It had suddenly become real. Fortunately I didn't have to face any more professionals for 72 hours. When the 72 hours was up, I kept practicing and told five people in one day. That night we had instant pizza for dinner.
It had suddenly become real, but it is going to suddenly become real 100 more times before I will know how to sit with the possibility that John is much more vulnerable than we realized, that his ups and downs are a fact of life that won't go away and could get much worse.
I am not so good at pacing myself, even though someone mentioned the concept once when John was 15 months old. I thought for a long time that we were just remediating a static, stable condition with John, until now. That's officially true, but also, I was starting to see signs of something else going on before I was even settled with the static condition (settled never happened, by the way).
The stupid 12 weeks are still not over and as you can see, I've given up and am broadcasting this now. I have been mentioning it in some settings, since before this blog started (it started in the middle of the trial). I was mentioning it, to try to get situated with it. It sort of works (that means it doesn't work, well, a little). I have some other ideas about getting comfortable with this that I'll write about if and when they happen.
I wish I could step out of the administrator's position for a while. I wish I could blow off all the therapy homework and halt all the helpful processes I initiated and now have to keep up with, fight for, or make decisions about. I wish I knew how to just clean my house and play with my kids and that's all (though we have rented two Eddie Murphy movies so far during the med trial and I have never, ever rented a comedy and only a few non-kids movies in my life, so that's a step). I wish that when John has a cold, is slurring his newly acquired speech, and his muscle tone is like Raggedy Andy, that I could just enjoy snuggling instead of enjoying snuggling while being scared and sad. But that wouldn't be complete.
John has a great attitude: he's been low energy for a week and feels like a gummy worm to me but he still constantly asks me to find a new toy for him to play that's fun-fun-fun. Tonight when we were about to go to sleep, he did something new again. You could tell it was a huge effort, and he did it with his Baby Bop doll bouncing on his knee. He recited the entire chorus of Baby Bop's song that is repeated through more than one Barney video: Look at me, me, me. I'm three, three, three. I'm as happy as can be, be be. Can you tell? Can you see? I'm a very very very happy me!
He's four, not three, but that doesn't take away from the performance at all. He really embodies the song.
I know all that stuff I wished is possible. Well, maybe not stepping out of the administrator's position, at least for long. But it is the way we do things, not the what we do. I know there is a way of being (that I don't have to attain perfectly) that will allow all this to exist at the same time, where there is no right answer, where as long as we keep showing up we are doing just fine. The impossible-looking easy paradoxical magic is getting from that knowing to the actual being.
I know why John gained speech. There are three reasons and this one of them is the biggest. It's a little maroon colored gelcap called coenzyme Q10. And it's kicking my butt.
The fact that John is talking is good. The fact that John is talking from CoQ10 probably indicates that he has a progressive disease.
I was the one who came up with the mitochondrial disease idea, 11 months ago. John's doctors, as far as I know, had him in the "he has X except for a few funny things which don't match but which we never think about except every 6-12 months for 30 minutes" category. But it bothered me. He had these symptoms that were not supposed to be found with his diagnosis. One day, 11 months ago, someone I distantly know posted a note that her somewhat-similar-to-mine son was just diagnosed with an unknown mitochondrial disorder. Because of the somewhat-similarness, I immediately went and looked up this thing that I had never heard of. And I spent about two months in a state of oh boy (after which, by the way, I thought I was fully adjusted). I wrote John's pedi but things happened and we didn't get to meet about it. He referred us to the neurologist, but the wait to get in was so long that John had had his summer weird falling down into the hospital by the time we would have seen him. At the time there was no metabolic doctor in our area for him to see and I didn't even know what that was anyway. But that's all past.
Fast forward to the end of summer, when the city had just acquired a nice new metabolic doctor, and it was almost like we met coming down the bottom of two slides. I always like making a good impression by meeting someone for the first time at 3 PM when I have slept the night before in my clothes, am tired from a day of being blown off by good old boys and praying during weird tests, and am sitting in a kid hospital bed with the rails up nursing my three-year-old. As it should be, though, this doctor met us as gracefully as if we had invited him for tea presented by a full serving staff. And it went normally from there, except that unlike normal doctors, I could understand almost none of what he said the first two hours, and I still haven't gained enough experience with this topic that I can guess what he is going to suggest or even how he will structure our visits. I am very slow to adjust. I had been complaining to other folks for about two years that John had lost a few skills and such, but now that we have a doctor who gets out a pen and says, "Okay, since we last saw you, what skills has he gained and lost?"- when he says that, I can only stammer while my mind goes completely blank.
So, this doctor's quest is to try to figure out if something metabolic is going on with John. We started with a huge quantity of blood tests and detailed interviews and exams. If certain of the tests don't lead anywhere, a next step is a muscle biopsy. They take a big piece of muscle out of his leg, flash freeze it, and hopefully keep it frozen and send it to all sorts of places and do things to it to look at the mitochondria and some other little tiny things.
Last time we met, I was prepared to explain why I had changed my mind and didn't want the muscle biopsy done then. Instead, our doctor suggested the same thing when I was only in the first sentence of my argument. He suggested that we do a trial of CoQ10, which is one of the main medications prescribed for mitochondrial disease. I am not going to explain CoQ10 here. I'll write about it when I am feeling cheerier.
There was one catch to the three month trial, which was important. I couldn't tell John's therapists anything about it. There is a good reason, and that too belongs elsewhere. It sounded pretty easy, and I went out right away and got the stuff.
It is supposed to take some time to get the level built up in your blood. John had only been on it for five days when he had his first therapy session. It was PT. He was acting so strange. He was agreeing to try a large number of new things and enjoying them. This was not my kid.
Two days later he got a bad cold that erased a lot of therapies from our calendar. But you know what happened after that. It started with the molasses cookies and went up to...to where it is now, a beautiful, improbable point that I am tired of trying to describe.
We kept going to therapies and he would do things, like say the therapist's name, or meet his goals, do something he wasn't supposed to be able to do, talk in sentences.... At first it was kind of fun to just smile when the therapists commented on how well he was doing. Then it became outrageous, and finally ridiculous. I was feeling like an idiot, not being able to say anything to them. It was impacting his treatment. For a couple of weeks I told them there was something I couldn't tell them, and finally, I told one.
There was something part of me liked about the blind trial. It was a little like pretending it wasn't happening. I could just be ignorantly happy along with the therapists at how well he was doing. But in another way, I didn't like it, because by four weeks in I knew: his strong positive response to CoQ10, an important ingredient in multiple ministeps of the respiratory chain, pointed to what was wrong. And it was hard to be the one tasked with temporarily hiding our new hint of what was wrong, because, dammit, I'm the mom.
The good news and the bad news. I am sitting on my fingers to keep myself from apologizing for being dramatic. I can apologize later, and maybe later I will even be able to write and say I was all wrong about this. You know, I went to read family stories on the MDA website today and the first one I read was about a boy who was misdiagnosed with a more serious disease than he had. On the other hand, I've suspected this for a year with that mommy gut feeling and have just been waiting around for some doctor to get on board.
But back to being the mom. It's possible, though not certain, that this little experiment could help a large number of patients, and I don't regret trying it in this way. My personality is perfectly suited to extending denial by 9-10 weeks. It was hard because when John was doing the great new things, if I was really completely honest I would have said, "This is killing me. I'm watching him do so well and knowing it means he is going to go downhill."
Things were complicated by the fact that about 7-8 weeks into the trial, we told another doctor about the sudden speech. Through a flurry of excited running about and doctor to doctor talk, I got some secondhand instructions that didn't make sense about the trial, and to get it worked out, I called the metabolic doctor's office three times and never got a return call.
I held out on the original plan for two more weeks (but still not to the end of the 3 month silence period) before telling a second therapist. I was starting to get the explanation into a package that was easier to say. When I got home I felt like I had been punched in the stomach. That made either two-thirds or three-quarters of John's therapists knew now. It had suddenly become real. Fortunately I didn't have to face any more professionals for 72 hours. When the 72 hours was up, I kept practicing and told five people in one day. That night we had instant pizza for dinner.
It had suddenly become real, but it is going to suddenly become real 100 more times before I will know how to sit with the possibility that John is much more vulnerable than we realized, that his ups and downs are a fact of life that won't go away and could get much worse.
I am not so good at pacing myself, even though someone mentioned the concept once when John was 15 months old. I thought for a long time that we were just remediating a static, stable condition with John, until now. That's officially true, but also, I was starting to see signs of something else going on before I was even settled with the static condition (settled never happened, by the way).
The stupid 12 weeks are still not over and as you can see, I've given up and am broadcasting this now. I have been mentioning it in some settings, since before this blog started (it started in the middle of the trial). I was mentioning it, to try to get situated with it. It sort of works (that means it doesn't work, well, a little). I have some other ideas about getting comfortable with this that I'll write about if and when they happen.
I wish I could step out of the administrator's position for a while. I wish I could blow off all the therapy homework and halt all the helpful processes I initiated and now have to keep up with, fight for, or make decisions about. I wish I knew how to just clean my house and play with my kids and that's all (though we have rented two Eddie Murphy movies so far during the med trial and I have never, ever rented a comedy and only a few non-kids movies in my life, so that's a step). I wish that when John has a cold, is slurring his newly acquired speech, and his muscle tone is like Raggedy Andy, that I could just enjoy snuggling instead of enjoying snuggling while being scared and sad. But that wouldn't be complete.
John has a great attitude: he's been low energy for a week and feels like a gummy worm to me but he still constantly asks me to find a new toy for him to play that's fun-fun-fun. Tonight when we were about to go to sleep, he did something new again. You could tell it was a huge effort, and he did it with his Baby Bop doll bouncing on his knee. He recited the entire chorus of Baby Bop's song that is repeated through more than one Barney video: Look at me, me, me. I'm three, three, three. I'm as happy as can be, be be. Can you tell? Can you see? I'm a very very very happy me!
He's four, not three, but that doesn't take away from the performance at all. He really embodies the song.
I know all that stuff I wished is possible. Well, maybe not stepping out of the administrator's position, at least for long. But it is the way we do things, not the what we do. I know there is a way of being (that I don't have to attain perfectly) that will allow all this to exist at the same time, where there is no right answer, where as long as we keep showing up we are doing just fine. The impossible-looking easy paradoxical magic is getting from that knowing to the actual being.
Friday, February 20, 2009
Suitcases
Tuesday, February 17. I unpacked our suitcases. The ones from the last week of July.
Tuesday is the morning I've started to use for paperwork, because the house is empty for three hours. This Tuesday, both kids were home with a fever and there was no chance of the house being empty. I was disappointed. I've had this kind of half-success, half-false-hope thing going where on Tuesday mornings I would take a cup of 50 pennies and a quickly improvised plastic tip container, and put a penny through the lid slot of the container each time I got rid of a piece of paper on my desk. If things were going well, I could get through the 50 pennies more than once, especially if I gave myself 5 for phone calls. Last week the practice resulted in a clear space on my desk the size of three sheets of paper.
That wasn't going to happen today. I walked around the house and a big chunk of sludge was following me, composed of expectations, conflicting beliefs, and cement of mope. It was when I was walking into the house and kicking my shoes against a board to try to get the mud off them that I thought: as long as everything already seems impossible, I should think of something harder to do than the desk. The kids had fevers, but besides John running slow and sister hoping to watch lots of movies, they were okay. What is harder than the desk? I know, our taxes! No, that is paperwork. Okay, the suitcases.
We had breakfast and got the entire kitchen table set up for a large-scale tempera paint experiment with fingerpainting paper, involving a muffin tin and brushes for John, and various tools and license to directly squeeze paint from the bottles for sister. I only had to go back into the kitchen to help them every few minutes, which didn't matter because I knew I would be walking through the house a lot to put things away.
The two suitcases were on an extra bed in the bedroom. I got the cup of pennies and tip jar ready.
The first couple of hours were spent in clearing a path to the extra bed, because of the popcorn popper, ice shaver, food scale, Barbie roller skates, bag of used shoes that didn't fit the foot braces, last year's swim diapers, dollhouse basement, and all that stuff people usually keep in their master bedroom. I thought I might be defeated without having ever reached the suitcases, but we stopped and ate lunch and the kids moved on to other things besides paint. They were doing so well. They were expanding into the completely free time. There was a rough moment where John was sooo frustrated about a difficult flip-top squeeze cap combined with necessity of a diaper change, but after butting heads we stopped and snuggled in the recliner and then it was okay. He got back down on the floor. The kids quietly, recuperatively played more. The bedroom floor was swept and I was almost to the suitcases, having removed many of the things on top of them. I had lost count of the pennies around 108.
In the last week of June I had packed the borrowed suitcases, for our sixth trip to Massachusetts. They were full for the three-day train trip and month of therapy and classes. It was a good trip, but as you probably know, the morning we woke up to get back on the train to Texas, we didn't, because John just fell over and ended up in the hospital. So many new threads were begun then. As though displayed in a shallow, beautiful wooden bowl, the richness of all the therapy and classes now sat with hospital interviews, lab tests, insurance snafus, Google searches, and the notebook where I wrote all the grams of John's in/out food and liquid.
The suitcases were waiting in the guest room of our infinitely patient host family, being lived out of again while we waited for a handicapped sleeper car to open up on the totally booked Amtrak. (Due to a physical defect, I can't travel by air.) Once Amtrak was resolved, it came down to the subtraction of the numbers in the notebook. John was too dry: he wasn't drinking, and it was shown in his output. The hospital, falsely reassured by a non-drinking boy artificially plumped up with lots of IV fluids, had discharged him, but now he was dry.
There were a lot of phone calls and emails. I learned for the first time the fact that liquids are harder than solids to swallow, and thinner liquids are the hardest, which makes it hard for someone who only likes water. In the end, one of the doctors who called me back from Texas forbade him to travel until his urine output rose up to a certain number. What's more, she did the forbidding and instructing all in under 6 minutes. She had a busy, tired, but ferocious and brilliantly competent manner and she told me to stop trying to get him to drink. Instead I had to superhydrate his purees. Mix water into his applesauce and pureed spaghetti. I listened politely, and inside I was thinking: never heard of it. Could a few spoonfuls of water really help?
It worked, and we could travel. After one last set of labs, we got on the train. We still didn't know what had happened to him, if he would fall over again, and really what to do about it. I was nervous. I was thankful that I had recently acquired my first cell phone.
We made it to Texas.
When we got home, on the extra bed was some clean laundry from while we were away. The suitcases were put there, with crucial items pulled out. The small one quickly got used for a new hospital stay, then put back on the bed. I proactively stuck some good hospital toys in there for the seemingly inevitable next trip. And even though there were a few times when I cleared much of that space, it kept attracting items. It was starting to get embarrassing.
My attention was just not on the bed. It was on hanging on while whole new chapters of my kid unfolded slightly faster than I could comprehend. It was again on weighing everything that went in him and came out of him. It was on seeing him not get the predicted g-tube and being relieved, but still watching as though he was a stack of bent, full boxes that had just fallen down and would surely fall again. It was on writing down when he laid down and couldn't get up, how long he laid down, what happened before he got like that. It was on reading stories from other people working on some of the same things. It was on going to see four therapists and six doctors. On being given license to figure something out, figuring out The Resting Protocol, and it working.
It was on one day realizing that four months had passed, and he had gotten back to his old normal. Then, just as I started to stand up from my long-term crouching, box-stack-watching position, something came out of the sky: John started talking. That was a freak weather event, like an unprecedented 10-week storm of coins or candies, something good, that nevertheless surprises the crap out of you and knocks you down. For 10 weeks the storm kept coming and I laid on the ground beneath all the coins and candies while all the therapists said, "This is wonderful! Aren't you excited for all this talking!" Um, absolutely, but could someone shovel a few bushels of these treats off of me so that I can get up and go get a turkey sandwich?
I think I managed to get the metaphorical turkey sandwich a few times in that period, but the bedroom is beyond the kitchen, so the bed was still unaddressed.
Back to Tuesday: the cleaning had been going on way too many hours, with scores of kid assistance visits, and the suitcases were still there on an impressively clear bed, emanating some unknown substance that makes people leave their suitcases out.
No way, you guys. You are going in the closet. Now I was talking to suitcases. The kids were closing in on me, sister sitting on the main bed, John demanding to be entertained with random contents of the suitcases while I tried to put away the last 30 or so items. This was the last chance. Feeling like David Banner, I lifted up one suitcase at a time and forced my way to the back of the closet. The sheets, long unused except by the rabbit, were put in the washer.
It was clear.
Wow. The bed, and blenderless floor, looked really good. I kept popping in to look at the empty space. I was ready for the next new thing.
Well, after I got over being exhausted. The next new thing came Wednesday, blessedly insignificant, in the form of two crate-sized cardboard boxes of wrong diapers that a truck dropped off and someone put on the clear bed.
That space was awful for six months, and beautiful for 20 hours.
There is nowhere else to put the cardboard boxes right now. Oh, that bed looked so good empty. I might have to clean the closet.
But I couldn't clean it Wednesday, because that was the day we had to dive into juniper trees to catch 22 ducks.
Tuesday is the morning I've started to use for paperwork, because the house is empty for three hours. This Tuesday, both kids were home with a fever and there was no chance of the house being empty. I was disappointed. I've had this kind of half-success, half-false-hope thing going where on Tuesday mornings I would take a cup of 50 pennies and a quickly improvised plastic tip container, and put a penny through the lid slot of the container each time I got rid of a piece of paper on my desk. If things were going well, I could get through the 50 pennies more than once, especially if I gave myself 5 for phone calls. Last week the practice resulted in a clear space on my desk the size of three sheets of paper.
That wasn't going to happen today. I walked around the house and a big chunk of sludge was following me, composed of expectations, conflicting beliefs, and cement of mope. It was when I was walking into the house and kicking my shoes against a board to try to get the mud off them that I thought: as long as everything already seems impossible, I should think of something harder to do than the desk. The kids had fevers, but besides John running slow and sister hoping to watch lots of movies, they were okay. What is harder than the desk? I know, our taxes! No, that is paperwork. Okay, the suitcases.
We had breakfast and got the entire kitchen table set up for a large-scale tempera paint experiment with fingerpainting paper, involving a muffin tin and brushes for John, and various tools and license to directly squeeze paint from the bottles for sister. I only had to go back into the kitchen to help them every few minutes, which didn't matter because I knew I would be walking through the house a lot to put things away.
The two suitcases were on an extra bed in the bedroom. I got the cup of pennies and tip jar ready.
The first couple of hours were spent in clearing a path to the extra bed, because of the popcorn popper, ice shaver, food scale, Barbie roller skates, bag of used shoes that didn't fit the foot braces, last year's swim diapers, dollhouse basement, and all that stuff people usually keep in their master bedroom. I thought I might be defeated without having ever reached the suitcases, but we stopped and ate lunch and the kids moved on to other things besides paint. They were doing so well. They were expanding into the completely free time. There was a rough moment where John was sooo frustrated about a difficult flip-top squeeze cap combined with necessity of a diaper change, but after butting heads we stopped and snuggled in the recliner and then it was okay. He got back down on the floor. The kids quietly, recuperatively played more. The bedroom floor was swept and I was almost to the suitcases, having removed many of the things on top of them. I had lost count of the pennies around 108.
In the last week of June I had packed the borrowed suitcases, for our sixth trip to Massachusetts. They were full for the three-day train trip and month of therapy and classes. It was a good trip, but as you probably know, the morning we woke up to get back on the train to Texas, we didn't, because John just fell over and ended up in the hospital. So many new threads were begun then. As though displayed in a shallow, beautiful wooden bowl, the richness of all the therapy and classes now sat with hospital interviews, lab tests, insurance snafus, Google searches, and the notebook where I wrote all the grams of John's in/out food and liquid.
The suitcases were waiting in the guest room of our infinitely patient host family, being lived out of again while we waited for a handicapped sleeper car to open up on the totally booked Amtrak. (Due to a physical defect, I can't travel by air.) Once Amtrak was resolved, it came down to the subtraction of the numbers in the notebook. John was too dry: he wasn't drinking, and it was shown in his output. The hospital, falsely reassured by a non-drinking boy artificially plumped up with lots of IV fluids, had discharged him, but now he was dry.
There were a lot of phone calls and emails. I learned for the first time the fact that liquids are harder than solids to swallow, and thinner liquids are the hardest, which makes it hard for someone who only likes water. In the end, one of the doctors who called me back from Texas forbade him to travel until his urine output rose up to a certain number. What's more, she did the forbidding and instructing all in under 6 minutes. She had a busy, tired, but ferocious and brilliantly competent manner and she told me to stop trying to get him to drink. Instead I had to superhydrate his purees. Mix water into his applesauce and pureed spaghetti. I listened politely, and inside I was thinking: never heard of it. Could a few spoonfuls of water really help?
It worked, and we could travel. After one last set of labs, we got on the train. We still didn't know what had happened to him, if he would fall over again, and really what to do about it. I was nervous. I was thankful that I had recently acquired my first cell phone.
We made it to Texas.
When we got home, on the extra bed was some clean laundry from while we were away. The suitcases were put there, with crucial items pulled out. The small one quickly got used for a new hospital stay, then put back on the bed. I proactively stuck some good hospital toys in there for the seemingly inevitable next trip. And even though there were a few times when I cleared much of that space, it kept attracting items. It was starting to get embarrassing.
My attention was just not on the bed. It was on hanging on while whole new chapters of my kid unfolded slightly faster than I could comprehend. It was again on weighing everything that went in him and came out of him. It was on seeing him not get the predicted g-tube and being relieved, but still watching as though he was a stack of bent, full boxes that had just fallen down and would surely fall again. It was on writing down when he laid down and couldn't get up, how long he laid down, what happened before he got like that. It was on reading stories from other people working on some of the same things. It was on going to see four therapists and six doctors. On being given license to figure something out, figuring out The Resting Protocol, and it working.
It was on one day realizing that four months had passed, and he had gotten back to his old normal. Then, just as I started to stand up from my long-term crouching, box-stack-watching position, something came out of the sky: John started talking. That was a freak weather event, like an unprecedented 10-week storm of coins or candies, something good, that nevertheless surprises the crap out of you and knocks you down. For 10 weeks the storm kept coming and I laid on the ground beneath all the coins and candies while all the therapists said, "This is wonderful! Aren't you excited for all this talking!" Um, absolutely, but could someone shovel a few bushels of these treats off of me so that I can get up and go get a turkey sandwich?
I think I managed to get the metaphorical turkey sandwich a few times in that period, but the bedroom is beyond the kitchen, so the bed was still unaddressed.
Back to Tuesday: the cleaning had been going on way too many hours, with scores of kid assistance visits, and the suitcases were still there on an impressively clear bed, emanating some unknown substance that makes people leave their suitcases out.
No way, you guys. You are going in the closet. Now I was talking to suitcases. The kids were closing in on me, sister sitting on the main bed, John demanding to be entertained with random contents of the suitcases while I tried to put away the last 30 or so items. This was the last chance. Feeling like David Banner, I lifted up one suitcase at a time and forced my way to the back of the closet. The sheets, long unused except by the rabbit, were put in the washer.
It was clear.
Wow. The bed, and blenderless floor, looked really good. I kept popping in to look at the empty space. I was ready for the next new thing.
Well, after I got over being exhausted. The next new thing came Wednesday, blessedly insignificant, in the form of two crate-sized cardboard boxes of wrong diapers that a truck dropped off and someone put on the clear bed.
That space was awful for six months, and beautiful for 20 hours.
There is nowhere else to put the cardboard boxes right now. Oh, that bed looked so good empty. I might have to clean the closet.
But I couldn't clean it Wednesday, because that was the day we had to dive into juniper trees to catch 22 ducks.
Monday, February 16, 2009
Two bedtime stories
I am at the computer. It's almost bedtime. John crawls into the room.
"Mama, mama."
"What is it?"
"I need someting dat's fun-fun-fun. I need a toy to pway wit."
"Oh. Well, how about if I carry you in to Daddy and put you on the bed and you can wrestle!"
"No! I need a toy dat's fun-fun-fun fo me to pway wit."
"Ohhh."
I let him play with this little unknown object on the side of my computer. If you push it, a stick thing pops out. If you push the stick thing, it goes back in. Then I try again.
"I know. I'm going to Carry you in to Daddy, and you're going to see his Newspaper, and you're going to Go up to that newspaper and KNOCK it down!"
-pause- "O-KAY!"
We make a big deal of stomping across the house to find Daddy to knock the newspaper down (the universal sign for bedtime wrestling). Then I get the beds ready and check on sister, who has a fever. I feel helpless and guilty. I give her what I can think of, but I'd rather make it all better. I wonder if she has a fever because today was her day off from school, and all we did was let her go to grandma's house while John went to appointments. No, she had a sore throat for two days. No. Maybe.
I lie with the kids while they fall asleep. John goes right out. Sister is mostly asleep. She tosses and turns.
-----------------------------------
John has a new project of talking himself to sleep. He tells little bedtime stories that he makes up, and repeats them over and over. Sometimes he drifts off, wakes up and repeats them a little more. The first one ever was a summary of a Barney story about a strange noise heard at bedtime that turns out to be a squirrel outside the window, eating a nut.
The second story is mysterious to me. It starts, "Dirt, is hard." You have to pronounce dirt with no r to get it right. "Mommy, is dirt. Dirt, goes in the eh-uh-fa-do."
There is one last crucial sentence in the story, but it is completely unintelligible.
At this point I would say, "John, did you say dirt?"
"Okay."
"Did you say dirt goes in the elevator?"
"No! Dat's not what I said. I said someting ewse."
"Oh. I'm sorry."
Then he would tell the story again.
We went through the question about did you say dirt goes in the elevator, so many times, that he has changed his story. After "Dirt, goes in the eh-uh-fa-do" he now says, "I'm sowwy. Dat's okay. I said someting ewse" and then the final sentence.
Last night's was about a duck. "I heard a noise," he begins. "I heard a duck, going ring, ring, ring. It was a quacky duck. I heard a quacky duck going ring, ring, ring. I heard a quacky duck going quack, quack, quack."
I'm glad I could keep myself from asking for clarification with the duck story. And it's kind of nice to have someone tell me a bedtime story, even if he's mostly telling himself. Cause I'm going to have several bedtimes tonight, one for every time I wake up to check on sister.
"Mama, mama."
"What is it?"
"I need someting dat's fun-fun-fun. I need a toy to pway wit."
"Oh. Well, how about if I carry you in to Daddy and put you on the bed and you can wrestle!"
"No! I need a toy dat's fun-fun-fun fo me to pway wit."
"Ohhh."
I let him play with this little unknown object on the side of my computer. If you push it, a stick thing pops out. If you push the stick thing, it goes back in. Then I try again.
"I know. I'm going to Carry you in to Daddy, and you're going to see his Newspaper, and you're going to Go up to that newspaper and KNOCK it down!"
-pause- "O-KAY!"
We make a big deal of stomping across the house to find Daddy to knock the newspaper down (the universal sign for bedtime wrestling). Then I get the beds ready and check on sister, who has a fever. I feel helpless and guilty. I give her what I can think of, but I'd rather make it all better. I wonder if she has a fever because today was her day off from school, and all we did was let her go to grandma's house while John went to appointments. No, she had a sore throat for two days. No. Maybe.
I lie with the kids while they fall asleep. John goes right out. Sister is mostly asleep. She tosses and turns.
-----------------------------------
John has a new project of talking himself to sleep. He tells little bedtime stories that he makes up, and repeats them over and over. Sometimes he drifts off, wakes up and repeats them a little more. The first one ever was a summary of a Barney story about a strange noise heard at bedtime that turns out to be a squirrel outside the window, eating a nut.
The second story is mysterious to me. It starts, "Dirt, is hard." You have to pronounce dirt with no r to get it right. "Mommy, is dirt. Dirt, goes in the eh-uh-fa-do."
There is one last crucial sentence in the story, but it is completely unintelligible.
At this point I would say, "John, did you say dirt?"
"Okay."
"Did you say dirt goes in the elevator?"
"No! Dat's not what I said. I said someting ewse."
"Oh. I'm sorry."
Then he would tell the story again.
We went through the question about did you say dirt goes in the elevator, so many times, that he has changed his story. After "Dirt, goes in the eh-uh-fa-do" he now says, "I'm sowwy. Dat's okay. I said someting ewse" and then the final sentence.
Last night's was about a duck. "I heard a noise," he begins. "I heard a duck, going ring, ring, ring. It was a quacky duck. I heard a quacky duck going ring, ring, ring. I heard a quacky duck going quack, quack, quack."
I'm glad I could keep myself from asking for clarification with the duck story. And it's kind of nice to have someone tell me a bedtime story, even if he's mostly telling himself. Cause I'm going to have several bedtimes tonight, one for every time I wake up to check on sister.
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