On legacy....what consitutes a legacy? We all have things that we 'do' during our time on earth, whether that time is very short or very long. We all have things we accumulate, too, from fancy china to quirky collections to real estate. What does any of it mean? What is the purpose? How important is our legacy? How do we get one?
I have been following a really great blog about a little boy that passed before he turned five years old. His life, and subsequent passing, have touched more lives than some people ever do in a very long lifespan. What is it that determines what our legacy is?
Is it moxie? Caring? Sight? What makes some people reach out to the world, while others stay locked up in a shell and never really grab anyone? Are they better people than the rest of us? Are they smarter? Are they more interesting? Is legacy reserved for those with wealth? Experience? Connections? Does the afterworld care who we knew or how much we made?
I have to wonder if the difference isn't truth.
Even though this young boy wasn't able to speak for himself, his mom spoke for him, and very eloquently. This made people relate to his story and find themselves in the words. She spoke his truth. The good, the bad, and the ugly of it. Here was a child who was unable to speak, not old enough to even ride a bike yet, will never vote or drive a car, and still has influenced so many people. For no other reason than that he had a story to tell. A great, big, sad, event-filled story. That his mom took the time to tell.
I have come into contact, as of late, with many adults who are in charge of our son's care, who have found lying to just be a way of life for them. How do people get this way? Is it because no one ever called them on their behaviors? Is it because lying pays dividends? Is it because they were raised to lie to get ahead? Whatever the reason, it must work for them, or they would change their behavior, right?
Somehow, in the limited religious and spiritual scope of my upbringing, I came out of it with a sense of "do right by others." What is that? I'm not sure where it came from. I'm not a good person myself. I swear, I'm lazy, I get tired, I take the easy way out at times, and I don't work hard at everything I do. But, I do try to do right by others. When I walk into a store and the rug is flipped up at the corner? I lay it back down so no one after me will trip. When I see someone being wronged, I do everything possible to make it right. When my son has needs to be tended to, I tend to them. When someone asks my opinion, I give it.
I think honesty might be intrinsic. Of course, it has to be learned, too, to some extent, but I don't know how there can be so many dishonest adults if it is just a learned behavior, alone. Because even those with the worst upbringing would have come into contact with someone along the way who tried to teach them right from wrong. Who tried to show them telling a lie just breeds more lies. There would have had to have been someone with a conscience, a moral compass, a SOUL who would have pulled these people aside as youngsters and explained right and wrong to them. I believe enough in the goodness of people to believe that would have happened.
So that leaves us with intrinsic. Intrinsic--defined as: "belonging to the essential nature or constitution of a thing," "Of or relating to the essential nature of a thing; inherent." What really makes up a person, on the inside? Is it the influence of things outside? Or the very nature, in the center of our being, our very GUT, if you will, that determines who we are and how we act? If it is, how do we influence it in others?
I suggest maybe we can't. Maybe some people are just destined to be liars, and that is, in effect, who they are at the core of their being. Do they sleep well at night? Probably, because I find that people who live by their own set of skewed values usually see no wrong in their behavior. They find themselves to be doing fine, judging by their own set of rules, which may be so deviant as to cause most of us to gasp if we were allowed to view their set list of rules.
It is unfortunate that so many like-minded individuals seem to be running the show for our son's care right now. But, it is also very telling. Liars seem to attract other liars. It's an unspoken thing; a scent, if you will. All a person can do is wonder what these people will be leaving behind? Perhaps these people are great to their own families....maybe they are awesome bowlers; great gardeners; dog-lovers....maybe they even donate to charity on occasion or go to church. But are they good people?
I dare to say, that might be the most important thing we leave behind. Our goodness. Our rightness. Our moral compass/values/ethics/intrinsic worth. Maybe that is the gift, folks. Let's see more people try to polish that and put it on their mantle.
Tuesday, May 21, 2013
Thursday, April 4, 2013
In the usual 'busyness' of a general week around here, things fly by pretty fast. Between the have-to's and the want-to's, things get rather blurry and messy. Keeping your head above water becomes the new normal, and anything beyond that is luxury.
We did find out Mas seems to be a leftie. The only reason that's notable is because he is 15 years old and has never really shown a preference. (In fact, for years, he never knew his hands were attached to him....was quite the thing to watch once he figured it out!) We've always assumed he's ambidextrous. (Or, ambihandrous, as our friend Roger likes to refer to it!) Our observant OT noticed he was spearing food and dipping food beautifully with his left hand. We tried isolating the left hand at home, and voila!, he seems to have almost 'normal' hand function in his left hand. Very cool to see. I'm not sure where the wild/flailing hand movements began, but according to hindsight, it seems to be related to his continuous and long-term use of Reglan, a motility med he was on for about 8 years to help push food through his system. It seems Reglan has now been tied to ataxia, which would explain why his arms sometimes have a mind of their own. As my husband likes to say, any medicine is poison, and I guess I have to agree with that.
In other news, we had a troubling encounter with an oldster in Culver's the other day. As we were walking to our booth, an old man was laughing at Mas, and his wife said to him, "What are you laughing at?" Then I heard the man say something about "that boy." I wasn't completely positive what he said, so that kept me from destroying him with my fists, but it is troubling when someone who should know better is so blatantly rude. Again, the majority of people are awesome to us, but it's the minority who stick with you. I am usually too flustered to reply when those things happen directly, but I need to get better at it, because holding on to it only feeds frustration and anger later. Too bad people can't just ask what's wrong with him or keep their laughs to themselves. I find the older generation to be way less forgiving of Mas and his behaviors than the younger. Probably because kids like Mas were just locked away back in the old days, so to see them out and about is most likely off-putting to the oldsters.
We are currently waiting for insurance to approve his genetic bloodwork. As it turns out, the bloodwork in question only costs $1600. I say, 'only,' because he has had a lot more money than that spent on him in the past, in the name of diagnoses-chasing. We wait, impatiently, knowing that with the small fee of $1600, we could have some answers. Which would yield plenty of positive things, not the least of which is psychological; to have a cause to identify with, a t-shirt to wear, meetings to attend, parents to compare notes with, and an answer if someone would ever get the balls to ask what's wrong with him. The genetic counselor who prepared the insurance letter said, 'this family deserves answers.' And I thought, yes, we do. Fifteen years is a long time to sit and wonder what is wrong and how to go about fixing it in the present and avoiding it in the future.
In the midst of our busyness, is a spring break where Mas is spending the week at home. It got me to thinking the other day, how so many people think we are whining or complaining about his care. I realized a major difference in how his care is viewed. If you spend 20 minutes to one hour with Mas, you may think, 'that isn't so hard.' Try spending the day with him. Or two days. Or seven. Or fifteen years. I think the exhaustion factor comes in for the 'constants.' The people who are constantly with him, constantly wiping up drool, constantly changing diapers, constantly worrying over safety, etc. Remember that when thinking about any 'special' families you may know. What may seem like a manageable situation takes on a different hue entirely when you think of the complexities of long-term care. Anything is manageable in small bites, but to have to eat the same meal for years and years gets more difficult.
We did find out Mas seems to be a leftie. The only reason that's notable is because he is 15 years old and has never really shown a preference. (In fact, for years, he never knew his hands were attached to him....was quite the thing to watch once he figured it out!) We've always assumed he's ambidextrous. (Or, ambihandrous, as our friend Roger likes to refer to it!) Our observant OT noticed he was spearing food and dipping food beautifully with his left hand. We tried isolating the left hand at home, and voila!, he seems to have almost 'normal' hand function in his left hand. Very cool to see. I'm not sure where the wild/flailing hand movements began, but according to hindsight, it seems to be related to his continuous and long-term use of Reglan, a motility med he was on for about 8 years to help push food through his system. It seems Reglan has now been tied to ataxia, which would explain why his arms sometimes have a mind of their own. As my husband likes to say, any medicine is poison, and I guess I have to agree with that.
In other news, we had a troubling encounter with an oldster in Culver's the other day. As we were walking to our booth, an old man was laughing at Mas, and his wife said to him, "What are you laughing at?" Then I heard the man say something about "that boy." I wasn't completely positive what he said, so that kept me from destroying him with my fists, but it is troubling when someone who should know better is so blatantly rude. Again, the majority of people are awesome to us, but it's the minority who stick with you. I am usually too flustered to reply when those things happen directly, but I need to get better at it, because holding on to it only feeds frustration and anger later. Too bad people can't just ask what's wrong with him or keep their laughs to themselves. I find the older generation to be way less forgiving of Mas and his behaviors than the younger. Probably because kids like Mas were just locked away back in the old days, so to see them out and about is most likely off-putting to the oldsters.
We are currently waiting for insurance to approve his genetic bloodwork. As it turns out, the bloodwork in question only costs $1600. I say, 'only,' because he has had a lot more money than that spent on him in the past, in the name of diagnoses-chasing. We wait, impatiently, knowing that with the small fee of $1600, we could have some answers. Which would yield plenty of positive things, not the least of which is psychological; to have a cause to identify with, a t-shirt to wear, meetings to attend, parents to compare notes with, and an answer if someone would ever get the balls to ask what's wrong with him. The genetic counselor who prepared the insurance letter said, 'this family deserves answers.' And I thought, yes, we do. Fifteen years is a long time to sit and wonder what is wrong and how to go about fixing it in the present and avoiding it in the future.
In the midst of our busyness, is a spring break where Mas is spending the week at home. It got me to thinking the other day, how so many people think we are whining or complaining about his care. I realized a major difference in how his care is viewed. If you spend 20 minutes to one hour with Mas, you may think, 'that isn't so hard.' Try spending the day with him. Or two days. Or seven. Or fifteen years. I think the exhaustion factor comes in for the 'constants.' The people who are constantly with him, constantly wiping up drool, constantly changing diapers, constantly worrying over safety, etc. Remember that when thinking about any 'special' families you may know. What may seem like a manageable situation takes on a different hue entirely when you think of the complexities of long-term care. Anything is manageable in small bites, but to have to eat the same meal for years and years gets more difficult.
Tuesday, March 26, 2013
I keep wondering when I'll get used to the smell of pee. Stenchy stuff, that urine. I recall going to visit my great grandma in the nursing home in Watertown when I was young. The trip stands out to me for three main reasons: 1) the drive from Monroe to Watertown was a long one, and not one we were able to afford to take very often. 2) my mom had a very cool, very well-protected set of tiny pens, I believe there were four of them in a plastic case, and the only time I was able to use those pens was during church and when we went to Watertown. (Smart woman, that mom of mine.) 3) the overwhelming stench of urine that pummeled you at the door when you entered the home. I will never forget it. I used to think that smell was the "smell of the old." As it turns out, it isn't limited to that.
For a special needs family, there are a myriad of issues to deal with. I believe the hierarchy varies from time to time, but it mainly reads as such: 1) health issues, 2) education issues, 3) sibling issues, 4) social/'going out in public' issues, 5) marital issues, 6) caregiver's personal health issues. It is easy to see why most special families are suffering. You are either mired in #1 for years, and barely get to dip your toe into numbers 2-6, or you keep ping-ponging back and forth between the six items and never feel grounded. In our 15 years on this special ride, we have seen them all, but we mostly roll around in #1.
Certainly there are worse things to deal with than incontinence. I have people make comments to that effect all the time. And, they are right. Unless you are the one dealing with the constant barrage of diapers and laundry that equals incontinence. It doesn't sound that bad unless you are, literally, knee-deep in this shit. Then, it takes on an other-wordly quality that basically consumes your home life.
First off, is the smell. I have learned to hone my already keen sense of smell to actually ascertain today's bedsheet situation while still at my son's door. One whiff, and I can tell you if we're dealing with a total wash situation, a fan-only situation, or a diaper full of stool coupled with urine situation. I am rarely wrong. The situation is perhaps intensified by the fact that he sleeps in a king sized bed. This only makes the sheets larger and the laundry longer. However, it is handy when he has teeth pulled or is very sick; we can easily lay next to him to observe him while being able to get up and leave without disrupting his sleep.
Next? The laundry. We are currently in a twice per day laundry situation. We have a laundry emergency at 10 pm and 7 am every day. There are a couple of things about that which truly suck. First of all, the washer/dryer is getting one hell of a workout. Not even counting his drooly laundry, let alone the rest of a 'normal' family's laundry to deal with. Secondly, the sheets are getting a hell of a tumbling twice per day. Even with the addition of a pad under where he sleeps, which catches most of the urine, we are still looking at washing the fitted sheet, the flat sheet, the under-pad, and usually his comforter/blanket. The other issue is time. You can't really leave the house when you are in a constant state of laundry. Or, you can, but you are always behind when you return. Perpetually behind. (A good title for a book describing a "special" family.)
Then there's the aspect of how is this affecting his esteem? I'm sure lying in urine is not a good feeling. I can't imagine. I worry about this part of it, all the time. How do we remedy this situation? How does one put a positive spin on this? How does one imagine a lifetime of this, for either him or us?
He does amazing things every day. And for that, we are eternally grateful. And could things be worse? Boy howdy, could they. We know many people who would quite literally kill to only have incontinence to complain about. But, I have found that most people commiserate about their current situation, regardless of severity. If the worst issue you face with your children is glasses or braces, that is still huge to you. The same as if the worst issue you face is respirators or wheelchairs. The feeling of failure as a parent and the constant state of worry that accompanies it doesn't know where it falls on the 'severity chart.' It just is. It's present, and all-consuming, and life-altering.
It brings me back to a time when I was young and fresh-faced and red-cheeked and ready to face the world. I was going to make a difference! I was going to be a great band director and an art teacher! I was going to change lives every day! The best laid plans seem to be folly on our part. Plans are made to be broken; goals are made to be squashed. I have heard people say, "We make plans, and God laughs." I prefer to think of it as, "We make plans, and the universe says, to hell with that." The best we can do is face each day with our steel armor and false smiles; hoping for tomorrow to come along and give us a break.
They say something like 85% of 'special' families end up in divorce. I can see many reasons for this to be the case, but the number one reason has to be the fact that there are many occasions when you size up your partner as this: a reliable babysitter. A chance to have a break, sleep in, go on vacation, wander through a mall without being on a time clock or having to take someone to the bathroom every hour. I wonder how people treat their lives when these luxuries are present. Even the feeling of going to bed at 10 o'clock without first taking a soaked child to the bathroom and washing sheets. It must feel like nothing to normal people, but would feel like a vacation in Fiji to us.
So, when will we get used to this? The scent of parenting in this manner? I suspect never. They say humans are very adaptable and can acclimate to new situations quickly, and I can say we have gotten used to many parts of this. Knowing we will only get away as a couple one week per year; knowing we need a diaper bag with us wherever we go, forever; knowing we will have to walk next to him in stores eternally so he won't reach out and grab someone's hair or pinch their arm; knowing our daughter will always partially resent us for our choice to keep him home or be on the receiving end of two exhausted, overworked parents; just knowing that this life is the life we get, from here on out. But the smell of pee? I suspect that will always ring fresh in my nose; challenging me to either get moving to clean it up, or wave the white flag of parental surrender.
I promised to blog more often. That was in March of 2012. They say to 'write what you know', and to 'be true to yourself and your situation.' That is easier said than done, when the topics of your life scare the daylights out of you. Literally and figuratively.
For a special needs family, there are a myriad of issues to deal with. I believe the hierarchy varies from time to time, but it mainly reads as such: 1) health issues, 2) education issues, 3) sibling issues, 4) social/'going out in public' issues, 5) marital issues, 6) caregiver's personal health issues. It is easy to see why most special families are suffering. You are either mired in #1 for years, and barely get to dip your toe into numbers 2-6, or you keep ping-ponging back and forth between the six items and never feel grounded. In our 15 years on this special ride, we have seen them all, but we mostly roll around in #1.
Certainly there are worse things to deal with than incontinence. I have people make comments to that effect all the time. And, they are right. Unless you are the one dealing with the constant barrage of diapers and laundry that equals incontinence. It doesn't sound that bad unless you are, literally, knee-deep in this shit. Then, it takes on an other-wordly quality that basically consumes your home life.
First off, is the smell. I have learned to hone my already keen sense of smell to actually ascertain today's bedsheet situation while still at my son's door. One whiff, and I can tell you if we're dealing with a total wash situation, a fan-only situation, or a diaper full of stool coupled with urine situation. I am rarely wrong. The situation is perhaps intensified by the fact that he sleeps in a king sized bed. This only makes the sheets larger and the laundry longer. However, it is handy when he has teeth pulled or is very sick; we can easily lay next to him to observe him while being able to get up and leave without disrupting his sleep.
Next? The laundry. We are currently in a twice per day laundry situation. We have a laundry emergency at 10 pm and 7 am every day. There are a couple of things about that which truly suck. First of all, the washer/dryer is getting one hell of a workout. Not even counting his drooly laundry, let alone the rest of a 'normal' family's laundry to deal with. Secondly, the sheets are getting a hell of a tumbling twice per day. Even with the addition of a pad under where he sleeps, which catches most of the urine, we are still looking at washing the fitted sheet, the flat sheet, the under-pad, and usually his comforter/blanket. The other issue is time. You can't really leave the house when you are in a constant state of laundry. Or, you can, but you are always behind when you return. Perpetually behind. (A good title for a book describing a "special" family.)
Then there's the aspect of how is this affecting his esteem? I'm sure lying in urine is not a good feeling. I can't imagine. I worry about this part of it, all the time. How do we remedy this situation? How does one put a positive spin on this? How does one imagine a lifetime of this, for either him or us?
He does amazing things every day. And for that, we are eternally grateful. And could things be worse? Boy howdy, could they. We know many people who would quite literally kill to only have incontinence to complain about. But, I have found that most people commiserate about their current situation, regardless of severity. If the worst issue you face with your children is glasses or braces, that is still huge to you. The same as if the worst issue you face is respirators or wheelchairs. The feeling of failure as a parent and the constant state of worry that accompanies it doesn't know where it falls on the 'severity chart.' It just is. It's present, and all-consuming, and life-altering.
It brings me back to a time when I was young and fresh-faced and red-cheeked and ready to face the world. I was going to make a difference! I was going to be a great band director and an art teacher! I was going to change lives every day! The best laid plans seem to be folly on our part. Plans are made to be broken; goals are made to be squashed. I have heard people say, "We make plans, and God laughs." I prefer to think of it as, "We make plans, and the universe says, to hell with that." The best we can do is face each day with our steel armor and false smiles; hoping for tomorrow to come along and give us a break.
They say something like 85% of 'special' families end up in divorce. I can see many reasons for this to be the case, but the number one reason has to be the fact that there are many occasions when you size up your partner as this: a reliable babysitter. A chance to have a break, sleep in, go on vacation, wander through a mall without being on a time clock or having to take someone to the bathroom every hour. I wonder how people treat their lives when these luxuries are present. Even the feeling of going to bed at 10 o'clock without first taking a soaked child to the bathroom and washing sheets. It must feel like nothing to normal people, but would feel like a vacation in Fiji to us.
So, when will we get used to this? The scent of parenting in this manner? I suspect never. They say humans are very adaptable and can acclimate to new situations quickly, and I can say we have gotten used to many parts of this. Knowing we will only get away as a couple one week per year; knowing we need a diaper bag with us wherever we go, forever; knowing we will have to walk next to him in stores eternally so he won't reach out and grab someone's hair or pinch their arm; knowing our daughter will always partially resent us for our choice to keep him home or be on the receiving end of two exhausted, overworked parents; just knowing that this life is the life we get, from here on out. But the smell of pee? I suspect that will always ring fresh in my nose; challenging me to either get moving to clean it up, or wave the white flag of parental surrender.
I promised to blog more often. That was in March of 2012. They say to 'write what you know', and to 'be true to yourself and your situation.' That is easier said than done, when the topics of your life scare the daylights out of you. Literally and figuratively.
Thursday, September 20, 2012
Sameness, regardless
I grew up in a small town, (very small town, by some standards) of 100 people, give or take a few dogs or guests who overstayed their welcomes. Everyone knew everyone, and that's the way it always was.
There was a lady in town who lived with her mom. She was older than me; maybe by ten or so years. Rumor was, she was being held by some kids when she was a baby, was dropped on her head onto the floor, and suffered brain damage. I'm not sure if the was the urban legend version of what happened, or the actual fact, but the end result was the same: a woman who acts like a child. She used to come into the cafe when I worked there as a waitress; always with her mom, always acting much, much younger, and always very sweet and innocent. They say she plays piano like a dream. I never had the opportunity to hear her, but knowing she came from a very musical family, I imagine that is true. For as long as I can remember, she has lived with her parents in our small town, in the same house.
A while back, her father passed away. Now, it is just her and her mom, living in the exact same house, the same street, the same situation, that they've been in since she was a baby. I imagine their days are very much the same, each day. Probably a schedule based on a need for routine and also a lack of anything different in a town of that size.
This spring, while home for my grandma's funeral, I saw her mom up at our church. She came directly to talk to me, and I could see in her eyes that she was aware of the beginning of my journey with Mas. We talked about small talk; weather, my gram, etc. She told me she would have to be moving on to a nursing home soon, and I glanced over at her daugher, wondering what was going to become of her now. She looked at me, and in that instant, I knew, all too well, the fear she was feeling inside. I'm sure she had been pondering that very question over the entire span of her daughter's life. I could also see in her eyes the extreme weariness that is just a given when you are caring for a child such as this. No matter how much you would try to add spice to your lives or adapt to some type of different days, the sameness would rule. It would have to. What else has a chance?
I wonder what she thinks of her journey. Does she wish it had been different? Does she wish she had institutionalized her daughter? Does she wonder how things might have been if that accident hadn't occurred when she was a baby? Does she envy her husband for passing away and moving on to a different sort of life/afterlife?
I wish I could sit down with her and ask her these questions. I imagine the answers might be sad. I imagine I already know some of her replies, and I also suspect some of the things she might say would surprise me.
I read once, on a blog when Mas was still a baby, that we are the only parents who hope we outlive our children. I thought, at the time, what an awful thing to say/think. Now, I start to see the origin of that thought. This man was saying, how awful would it be for us to pass away, and then leave the care of our teenaged child to a stranger. Nothing a parent should ever have to think about. Nothing a parent of a 'normal' child ever has to think about.
As lucky as we've been to have to deal with the things we deal with every day, this path is not easy. And, it is, a journey. No Point A to Point B stuff here. It has twists and turns, dark alleys and super-bright mornings, many tears and much laughter. Is it boring? At times, yes. (To have a creative mind and then be sentenced to a lifetime of the mundane, is somewhat comical....in a cosmic joke sort of way....) Intellectually stimulating? Not so much. Predictable? Almost always, when we're lucky.
I never would have guessed my days would revolve around diapers, especially 18+ years of changing diapers. If you would have told me that when I was 18, I would have laughed in your face. The fact is, though, my life revolves around diapers. Not to mention safety issues, personal grooming, laundry, chronic constipation, brain damage, germs, drool, spitting, medications, doctor visits, and behaviors. Revolves around. Hard to explain to the average person in any type of meaningful way. Let me take a stab at it....
Imagine having a 14 3/4 year old son, who is mentally stuck somewhere around 5-6, if we're lucky. (on paper, that number is much lower) With zero words. With chronic constipation. Who has to be thought of as a small child in terms of safety and feeding and meds. Whom doctors regard with a healthy dose of diagnostician envy as well as skepticism and questions.
Constipation alone, is almost killing our family. Chronic constipation, implies just what it says. Constipation, all the time....since birth. Constipated on breast milk, for God's sake. Which almost never happens. He lives on a plethura of medications, designed to help control the constipation. A schedule which can never vary, unless we want his constipation to get worse. Have you ever had to trim your almost 15 year old son's pubic hair, because so much crap was getting stuck in it that there was no way to clean it off? Have you ever had to wash your almost 15 year old son's bedding, twice a day, almost every day, because it is soaked, no, saturated, with urine? Can you imagine planning every trip, every outing, every single day, around diapers? How many will you need? How many wipes will you go through? Do you have garbage bags along to put the diapers and wipes in? Are the wipes dried out from sitting in the back of a hot car? Will there be a bathroom where we're going? Will there be an angry woman giving me a dirty look as I escort my (very old) son into "her" bathroom? Will he shit all the way down into his socks, or will it be contained in his diaper? Do you have spare clothes along? Spare shoes? Socks? When he hears the awesome echo in the bathroom, will he start vocalizing and piss off those angry women in the other stalls? Will someone be chilling in the handicapped stall, so we have to try to squeeze the two of us into a regular sized stall? This is just a tiny portion of what it's like for us to try to do anything; to try to go anywhere.
If you know a family, a "special" family, realize one thing....they are surviving. Surviving, only. They may act like they are thriving, may even say they are on occasion, but they are just getting by. Each day is a challenge and a sentence in sameness. And here, an important, pivotal point: There's not a damn thing wrong with sameness....they are so happy and relieved for their version of "normal", because God help them if their 'normal' spins into 'abnormal.' While most families' version of abnormal involves a hilarrrr-ious story that becomes part of the family's dinner party vernacular, a special family's version of abnormal generally involves doctors, hospitals, judgement, pain, sorrow, and suffering. Yes, normal and boring are generally what most special families want. Sameness can be a comfort, when the alternative is earth-shattering chaos.
There is just zero way to prepare for this parenting ride. No way to explain it, either. I will say this, though: nothing in my past has prepared me for how difficult this was going to be. For me, for Mas, or for our family. Even though he's 'doing great' and things 'could be worse', does not mean things are peaches and cream at the moment. Every moment that we have to go through with him makes me wonder, A) how did we ever get through the past almost 15 years, and B) how are we going to get through the rest of his life?
That said, we do belong to a club. A horrible club, that you would be wise not to want to be a part of. Enjoy your 'normal.' Enjoy where you are. Enjoy your family days out and your clean house and your bickering children. Know that everyone doesn't get to enjoy that stuff. Bask in the glow of your sameness, as much as possible. Because, somewhere, someone is wishing they could experience your version of sameness.
There was a lady in town who lived with her mom. She was older than me; maybe by ten or so years. Rumor was, she was being held by some kids when she was a baby, was dropped on her head onto the floor, and suffered brain damage. I'm not sure if the was the urban legend version of what happened, or the actual fact, but the end result was the same: a woman who acts like a child. She used to come into the cafe when I worked there as a waitress; always with her mom, always acting much, much younger, and always very sweet and innocent. They say she plays piano like a dream. I never had the opportunity to hear her, but knowing she came from a very musical family, I imagine that is true. For as long as I can remember, she has lived with her parents in our small town, in the same house.
A while back, her father passed away. Now, it is just her and her mom, living in the exact same house, the same street, the same situation, that they've been in since she was a baby. I imagine their days are very much the same, each day. Probably a schedule based on a need for routine and also a lack of anything different in a town of that size.
This spring, while home for my grandma's funeral, I saw her mom up at our church. She came directly to talk to me, and I could see in her eyes that she was aware of the beginning of my journey with Mas. We talked about small talk; weather, my gram, etc. She told me she would have to be moving on to a nursing home soon, and I glanced over at her daugher, wondering what was going to become of her now. She looked at me, and in that instant, I knew, all too well, the fear she was feeling inside. I'm sure she had been pondering that very question over the entire span of her daughter's life. I could also see in her eyes the extreme weariness that is just a given when you are caring for a child such as this. No matter how much you would try to add spice to your lives or adapt to some type of different days, the sameness would rule. It would have to. What else has a chance?
I wonder what she thinks of her journey. Does she wish it had been different? Does she wish she had institutionalized her daughter? Does she wonder how things might have been if that accident hadn't occurred when she was a baby? Does she envy her husband for passing away and moving on to a different sort of life/afterlife?
I wish I could sit down with her and ask her these questions. I imagine the answers might be sad. I imagine I already know some of her replies, and I also suspect some of the things she might say would surprise me.
I read once, on a blog when Mas was still a baby, that we are the only parents who hope we outlive our children. I thought, at the time, what an awful thing to say/think. Now, I start to see the origin of that thought. This man was saying, how awful would it be for us to pass away, and then leave the care of our teenaged child to a stranger. Nothing a parent should ever have to think about. Nothing a parent of a 'normal' child ever has to think about.
As lucky as we've been to have to deal with the things we deal with every day, this path is not easy. And, it is, a journey. No Point A to Point B stuff here. It has twists and turns, dark alleys and super-bright mornings, many tears and much laughter. Is it boring? At times, yes. (To have a creative mind and then be sentenced to a lifetime of the mundane, is somewhat comical....in a cosmic joke sort of way....) Intellectually stimulating? Not so much. Predictable? Almost always, when we're lucky.
I never would have guessed my days would revolve around diapers, especially 18+ years of changing diapers. If you would have told me that when I was 18, I would have laughed in your face. The fact is, though, my life revolves around diapers. Not to mention safety issues, personal grooming, laundry, chronic constipation, brain damage, germs, drool, spitting, medications, doctor visits, and behaviors. Revolves around. Hard to explain to the average person in any type of meaningful way. Let me take a stab at it....
Imagine having a 14 3/4 year old son, who is mentally stuck somewhere around 5-6, if we're lucky. (on paper, that number is much lower) With zero words. With chronic constipation. Who has to be thought of as a small child in terms of safety and feeding and meds. Whom doctors regard with a healthy dose of diagnostician envy as well as skepticism and questions.
Constipation alone, is almost killing our family. Chronic constipation, implies just what it says. Constipation, all the time....since birth. Constipated on breast milk, for God's sake. Which almost never happens. He lives on a plethura of medications, designed to help control the constipation. A schedule which can never vary, unless we want his constipation to get worse. Have you ever had to trim your almost 15 year old son's pubic hair, because so much crap was getting stuck in it that there was no way to clean it off? Have you ever had to wash your almost 15 year old son's bedding, twice a day, almost every day, because it is soaked, no, saturated, with urine? Can you imagine planning every trip, every outing, every single day, around diapers? How many will you need? How many wipes will you go through? Do you have garbage bags along to put the diapers and wipes in? Are the wipes dried out from sitting in the back of a hot car? Will there be a bathroom where we're going? Will there be an angry woman giving me a dirty look as I escort my (very old) son into "her" bathroom? Will he shit all the way down into his socks, or will it be contained in his diaper? Do you have spare clothes along? Spare shoes? Socks? When he hears the awesome echo in the bathroom, will he start vocalizing and piss off those angry women in the other stalls? Will someone be chilling in the handicapped stall, so we have to try to squeeze the two of us into a regular sized stall? This is just a tiny portion of what it's like for us to try to do anything; to try to go anywhere.
If you know a family, a "special" family, realize one thing....they are surviving. Surviving, only. They may act like they are thriving, may even say they are on occasion, but they are just getting by. Each day is a challenge and a sentence in sameness. And here, an important, pivotal point: There's not a damn thing wrong with sameness....they are so happy and relieved for their version of "normal", because God help them if their 'normal' spins into 'abnormal.' While most families' version of abnormal involves a hilarrrr-ious story that becomes part of the family's dinner party vernacular, a special family's version of abnormal generally involves doctors, hospitals, judgement, pain, sorrow, and suffering. Yes, normal and boring are generally what most special families want. Sameness can be a comfort, when the alternative is earth-shattering chaos.
There is just zero way to prepare for this parenting ride. No way to explain it, either. I will say this, though: nothing in my past has prepared me for how difficult this was going to be. For me, for Mas, or for our family. Even though he's 'doing great' and things 'could be worse', does not mean things are peaches and cream at the moment. Every moment that we have to go through with him makes me wonder, A) how did we ever get through the past almost 15 years, and B) how are we going to get through the rest of his life?
That said, we do belong to a club. A horrible club, that you would be wise not to want to be a part of. Enjoy your 'normal.' Enjoy where you are. Enjoy your family days out and your clean house and your bickering children. Know that everyone doesn't get to enjoy that stuff. Bask in the glow of your sameness, as much as possible. Because, somewhere, someone is wishing they could experience your version of sameness.
Friday, March 2, 2012
and a year goes by....like that!
I do remember posting about Prom last year. And probably realizing now why that was a good place to stop posting. We had organized somewhat of a shindig for our new photography studio, where we were offering to take prom pictures of people for $20. Crazy cheap for the kids; good experience for us. As it was, I did end up taking pictures of quite a few kids. Enough that we needed to have a couple of wonderful babysitters for Mas, spent hours of editing in the studio, printed up proof sheets for all, and also bought about $100 worth of snacks for the kids while they were waiting. As it was, absolutely no one bought even one single solitary picture. It was devastating to me at the time, but I seemed to gloss over it and push forward, because damned if I was going to admit defeat over this mess. Financially, we ended up losing about $300 when all was said and done, and we have zero to show for it. Except what it did to my psyche. Which was priceless.
As a couple of people thrust into this situation we are in, which is raising a couple of children, one of whom needs to stay tightly scheduled, (and one whom is very often ill) this photography studio seemed like a great "side" business for us; most notably for me. A way to use up some creative juices and yet still be available for those times when Mas is sick and ends up home for a week at a time, or when he is home after school and needs diapers changed, meds given, snacks provided, etc. And, for not having done any advertising yet, we have done remarkably well. I have a studio of pictures, wall-to-wall, to prove it. We have captured some nice moments, and are learning more and more as we go.
Still, though, last year's Prom stuck me hard. Like getting a poisoned arrow thrust in between your ribs. Hard to extract, and just seeping poison for months to come. It makes you question things like, "Should we even be trying to do this?" "Did we do something wrong?" "Were the pictures not as good as we thought?"
That last one scares me the most. After the aftermath of last year's Prom, I did not look at those pictures for a good, long time. Later last fall, I checked them out again, to see if the pictures were the problem, or the situation. I have to say, after months of doubting our abilities and worrying over the pictures, and after analyzing them with a fine-tooth comb, I have decided that the pictures were incredibly good. Sharp, colorful, fun, and we did capture the joie de vivre that was present on that good night. The reality is, (and the harsh truth), is that kids these days want grainy, poorly-lit photos on their cell phones, that they can then post on facebook. And that is all. They don't want their memories captured in living color. They want their grainy generation's version of color. Quality is really becoming, (all too swiftly) a thing of the past.
Our daughter did warn us of this, when we were getting ready to take these pictures. She told us kids wouldn't want those types of pictures. I didn't listen. I am old now, I realize, and thought I had these kids figured out. I don't.
As it was, I ended up archiving all of their photos to disc, where they will sit forever, untouched, as a constant reminder of the "Horrible Experiment Gone Wrong" in our studio. In fact, in our calendar organizer, on that day, I have written in black Sharpie: "Horrendous. NEVER AGAIN." Hee hee.
It was probably (yet another) test by the universe, to see if we were ready for this. I think I failed it for the past 11 months. But, now, I think I see it for what is was: a way to make us take pictures for the right reasons. In a town FILLED with photographers, (literally, 4300 populace and at least 5 professional photographers, as well as at least 25 people with a Rebel xti and a facebook page who think they're professional) this is absolutely the last place anyone should even think about starting a photography studio. Other people have more time, more resources, more experience, way more clients, and more exposure than we do. Which used to bum me out. Now, it feels like it's freeing us up.
We are able to spend as much time as we want on any given shoot. We can go wherever we want. We aren't tied down to any corporate leanings or anyone else's ideas for the direction a shoot should go. I usually have at least 50 photos I love from each shoot, and 20-25 photos I really love. I can see the truth in people's eyes and demeanor, and if I'm lucky, I can catch it. We are able to print frameless photos, photos on foam, on velvet, on canvas, and now on metal. We can make books, boxes, folios, phone cases, long pictures, square pictures...you name it. To hell with the perceived failures. I prefer to look at last year's Prom as a lesson in What Not To Do; as a thing to avoid in the future. Not as a way to live.
Life isn't always pretty. Or tied up in a bow. Or planned out the way we would like. But, as I told my daughter only a few days ago; life isn't determined by what kind of trials we are faced with, but with how we handle those trials. It was good advice, and I meant it. Now, I just have to take it. Always easier to hand out 'isms' than to follow them.
Here's hoping I can hop back on the blog train and move forward. Posting isn't hard. Posting your feelings is. Posting without feelings is cardboard writing, and I won't have it. As far as our business goes, why not have a photo studio in a town with the highest photographer/populace ratio we have ever born witness to? Where better than to hone our craft and showcase what we can do? Maybe too much competition is a great thing. A freeing thing. An inspiring thing.
And this year, on Prom night, I will be taking photos of my daughter and her friends. For free. For her. And no one else will be invited. We won't have a babysitter, and we won't need one. We won't spend hundreds of dollars to make none. We will spend whatever we want to make the night fun for us.
Souls are fragile little things. That little candle that is lit in the belly of a creative person is really just a tiny, thin little flame the majority of the time. Sometimes, it rages like an inferno! Other times, it gets snuffed out. If we are lucky, we can get the little bastard re-lit before our creativity takes a hike.
Saturday, April 30, 2011
on prom (or 'not winning')
Well, today is the day. "The" day, if you are a junior or senior in our town. Today is Prom. Our 16 year old has been prepping and stressing and planning and worrying about this day for a few months now. Things were much simpler if you attended Prom in the 80s...buy a poofy dress, get some dyed shoes, make your hair really big, put your wrist corsage on...and go! Now, there are designer dresses, alterations, a hair stylist, flip-flops on your feet, and wires that wrap around your arm and hold flowers. Quite a different experience.
As we have spent all this time preparing for Prom, it has been a challenge working around Mas for the festivities. Here are some of the mantras repeated the past week: "Keep Mas away from the dress", "Keep Mas out of the shoes", "What are we going to do with Mas while we're taking pictures?", "What are we going to do with Mas while we are at Grand March?", "What if he drools on someone's dress?" And the list goes on...and on, and on, and on....
It's funny that while we are doing what any "normal" red-blooded American family would do during Prom week, we are also saddled with immense work and worry over a young man who never asked to be a part of Prom. He just wants things to be like normal. Or, should I say, "normal". As his school break also happens to be this past week, things have been amped up and running at 100 mph for quite some time now.
I have to admit, while I don't think a little drool or a little noise at Grand March are anything to freak out about, I DO wonder what it would be like to, say, clean the house and have it stay clean for more than 20 minutes. Or, do the fun, girly-Prom-prep things without worrying about a babysitter. Or, what it would be like to stay up late tonight to see the kids off to the after-Prom party without shortening my night's slumber. (Because Mas will wake up at the same time tomorrow, regardless...after all, he didn't go to Prom!)
Things are getting tougher and tougher here at the ol' hacienda as far as maneuvering around the needs and demands of 13 year old special needs boy. Between the onslaught of diapers, the screaming fits for a plethura of unknown reasons, the spitting, the messes, etc., I now realize that the thing that will decide his fate is....me. His caregiver. I see now that I am going to tire long before I want to.
It's odd to think that people were just celebrating God and Easter and all things holy, when I was wondering what type of deity would give a child to a family, knowing that family would not be able to care for him. It seems like the cruelest of cosmic jokes. I used to try, very hard, to find God in all of this, and yet, it gets harder and harder by the day. I know there are things we are thankful for, and even more things we should be thankful for, but it is hard to gloss over the fact that we are stuck in a no-win situation here. As a person, I have given all to raise this child. As a family, we have given more. As a child stuck in a small teenager-y body, he deserves it all, but as far as what should be expected from people on a daily basis, we are maxed-out.
I keep hoping we will see a sign that we are actually doing things right or that things will start to look up. Or that we are supposed to be keeping him at home and trying to get through this. I don't know if we are right or we are wrong. I just don't know. I do know, though, that we are all weary, both in body and in spirit. If there is a Master in charge of all this, I hope he sees fit to give us some sort of sign that we are doing what we are supposed to do.
Wednesday, April 6, 2011
july?!
Okay, I see haven't posted since July. It seems hard to post when things are going in such a way that there's not much to say.
I think I am slowly departing the pieces of my midlife (who am I? what am I doing? where am I going? i went to college for this?!) crisis and starting to realize that *this* is my life. As John Lennon said so poignantly, 'life is what happens while we're busy making other plans.' And, that seems to be the case.
At 24 years old, I gave birth to my daughter, and started the road of motherhood. Three years later, I gave birth to my son, and started the road of 'special' motherhood. At 41 years old, I am still changing diapers, feeding, worried about safety issues, cleaning up after a child, etc. I surely never thought this would be my life. I thought my son would be playing football, rockin' the trombone, and enjoying his life at this point. I never thought I would be in a perpetual state of apology for his actions while in public, or giving him baths or wiping up his drool or cleaning him up after having a bowel movement that spread stool down to his knees or up his back. I also didn't think I'd be constantly worrying about his future, in a way that will sink you to your knees as a parent and make you want to hurl. I never thought I would have to watch girls point and giggle at him or have adults tsk-tsk us while we are out in public.
It is surely something my son didn't ask for, and also something for which we never could have been prepared. Here I thought I was just giving my daughter a sibling, not changing the course of her life forever starting at age 3 1/2.
Our daughter's life, 'pre-Mas', consisted of reading books, eating healthy meals, going for walks, taking regular naps, visiting family and friends, playing games, laughing, and spending lots of quality time with her mom. Her life, 'post-Mas', was a much different ordeal; full of her brothers' appointments, worry, sickness, medicines, etc. Certainly an unexpected fork in the road.
Our life, as parents, was forever changed upon his arrival. Surely we have much joy as he develops and surprises us, but we are also wracked with concern, worry, guilt over are we doing enough/too much, and just a lot of hard work in the form of caregiving.
If you know a caregiver, you may have some personal insight as to the type of journey this is. It is not for the faint of heart or the weak of back. (Or the ones with a poor sense of humor!) It is truly a lonely path and one without much reward at all; sometimes none whatsoever.
I often wonder how our lives would be if we hadn't wanted our daughter to have a brother. I wonder how a trip in the car would be without toys being hurled inches from our daughter's face or without things being banged against the window or without drool being spewed everywhere. I wonder about our home life, and how it would feel to clean the house and have it stay clean for longer than a half hour. How it would be to walk in public and not have the stares; pitiful or otherwise. How it would be to sleep in one morning, eat breakfast in peace, and not have to change urine-soaked sheets or try to keep the house quiet so he can sleep.
I am sure that we are blessed to have our son, and I am sure that we are grateful for all he has taught us and all he can do. But, there is a lot of work that got him here and even more work to keep him here. I love the kid, but don't love the work, I guess.
It certainly alters our perspective as a family, as a couple, as parents, and also as individuals. I hope we are able to keep up with all that is expected of us as we move forward. The easy answer, of course, is to put him in residential care. The only problem with that is, that we love him and he is our son. Having someone else do his care does not take away our worry; just eases our burden in certain areas. Respite care, while nice-sounding in theory, is a tricky road, as well. It does not find us the person to do his care; it only provides the money with which to do so. Not exactly an answer to our prayers.
It would be amazing if our society learned how to properly care for the elderly and the special needs individuals. I don't think I will see it in my lifetime, though. I guess we will just keep plugging along and hoping that our hard work is paying off in some respect. Oh, what a journey this has been and continues to be.
I hope there is rest for the weary, and a place of calm for the worried soul.
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