It occurs to me that you don't really make progress emotionally, spiritually, psychologically until you actively choose those things over which you have no choice. I don't mean passively accept - I mean actively choose. You don't have to LIKE them, but you do have to choose them. Whether it's your lousy parents, an amputated leg or a job loss or any number of unexpected things which happen, you have to choose them before you can open the door and discover the interior gift of them.
And that isn't easy.
Product Endorsement: I absolutely adore Tena Wash Cream. I don't know what I'd do without it. When changing hugely poopy diapers, there's nothing better. Thank you Tena.
Musings From a Life Transformed by Unconditional Love
Monday, October 19, 2009
Crones
Just back from dinner with the Crones. (The three aspects of a woman's life: Maiden, Mother and Crone) These sisters are precious women not so much for their wisdom, although they are wise, but because of their faithfulness. We have been together for a very long time. Sometimes more intensely than others, but I have always known that they love me and I love them. That's a rare and precious thing.
Deb was talking about her less than enjoyable job and Anthea said something like we should only do those things in our lives which we love. This is one of those things that sounds simple but is really very hard. Doing what you love requires sacrifice and hard work and saying no. Sometimes it means saying no to people you love. It also means giving up your addictions - and we all seem to have addictions of one kind or another.
Deb is a very wise woman, but she isn't quite a Crone yet. She is still in the Mother phase. She pointed this out and I didn't really pick up on the truth of her statement until I was in the car coming home. Doing what you love is often the privilege of a Crone. The way I have always heard it was the Maiden does what she is told, the Mother tells others what to do and the Crone finally gets to do what she wants.
Deb said she wished she could live any one of our lives and I countered with, "oh no. You do NOT want to live my life." Meaning, of course, Sam who was sitting right there slowly going ballistic about something. It was a very noisy restaurant and I manage Sam quite well, so none of the other Crones noticed a thing when he started having one of his strange fits where he gets very stiff, shaky and angry and cannot control himself and scares us both. I held him on my lap until it was over and he sank into me exhausted.
On the way home I thought about my life. I have been struggling to come to terms with Sam's delicate medical conditions and the probability that I will have to stand by him as he dies. But the bigger challenge, or the one I have to face up to each day, is how to live with the reality of how he is right now. Being his primary caregiver makes it impossible to do many things. Being his primary caregiver means to live in constant fear and to be always on the alert for subtle signs of distress. Being his primary caregiver means being tired all the time and feeling cut off from the world.
On the other hand, I have the luxury of being able to knit and make lace and do many creative things I wouldn't be able to do if I had a more "regular" life. I do live pretty much exactly the way I want to and I do put the things I love first in my life.
So I guess the moral is this: It is important to spend your life doing what you love, even if it breaks your heart.
Yeah. I can do that. I can't think of any way I'd rather live this life I have been given.
Deb was talking about her less than enjoyable job and Anthea said something like we should only do those things in our lives which we love. This is one of those things that sounds simple but is really very hard. Doing what you love requires sacrifice and hard work and saying no. Sometimes it means saying no to people you love. It also means giving up your addictions - and we all seem to have addictions of one kind or another.
Deb is a very wise woman, but she isn't quite a Crone yet. She is still in the Mother phase. She pointed this out and I didn't really pick up on the truth of her statement until I was in the car coming home. Doing what you love is often the privilege of a Crone. The way I have always heard it was the Maiden does what she is told, the Mother tells others what to do and the Crone finally gets to do what she wants.
Deb said she wished she could live any one of our lives and I countered with, "oh no. You do NOT want to live my life." Meaning, of course, Sam who was sitting right there slowly going ballistic about something. It was a very noisy restaurant and I manage Sam quite well, so none of the other Crones noticed a thing when he started having one of his strange fits where he gets very stiff, shaky and angry and cannot control himself and scares us both. I held him on my lap until it was over and he sank into me exhausted.
On the way home I thought about my life. I have been struggling to come to terms with Sam's delicate medical conditions and the probability that I will have to stand by him as he dies. But the bigger challenge, or the one I have to face up to each day, is how to live with the reality of how he is right now. Being his primary caregiver makes it impossible to do many things. Being his primary caregiver means to live in constant fear and to be always on the alert for subtle signs of distress. Being his primary caregiver means being tired all the time and feeling cut off from the world.
On the other hand, I have the luxury of being able to knit and make lace and do many creative things I wouldn't be able to do if I had a more "regular" life. I do live pretty much exactly the way I want to and I do put the things I love first in my life.
So I guess the moral is this: It is important to spend your life doing what you love, even if it breaks your heart.
Yeah. I can do that. I can't think of any way I'd rather live this life I have been given.
Friday, October 16, 2009
What Have I Accomplished?
Yesterday my therapist and I were discussing my diagnosis of PTSD. This is a bit of a misnomer. I've never been in a war zone or been attached by dogs or raped or anything like that. I actually suffer from CHRONIC Traumatic Stress Disorder, except there isn't any such thing. There should be. It's the result of being the oldest daughter of a WWII vet who DID have PTSD, which gives me a vulnerability to developing it, combined with 27 years and counting as the mother and primary caregiver of a profoundly sick and disabled son. (In this case, Person First language is inappropriate. Sick and Disabled are the point of that sentence). And then, the final blow, the brutal murder of my PTSD Dad 4 years ago. These things combined have transformed me into someone I am struggling to get to know. Someone who apparently deserves the diagnosis of PTSD.
So we were talking about my life and my guilty feeling that I haven't accomplished much. I'm no Madame Curie and I sort of grew up thinking I should/could be. She (my therapist) said that I'm too close to my life to be able to stand away from it and say, "WOW. That's a lot of work." All I can see is that I'm getting more and more tired and frightened and that there are days when I really don't want to leave the house. I just want to stay home, take care of Sam and do something creative. And, the way my life is constructed, I can do that. Which makes me grateful but I wonder if I'm really pulling my own weight. Maybe I'm so far from being Madame Curie that I'm actually a wimp.
I should mention here that I shared this fear with my husband at dinner and he actually snorted! (A comforting sound) and said, "You are NOT a wimp. No one is Madame Curie." God Bless him. Since he gets up every morning and goes to a very difficult job without complaining, his opinion means a lot.
Another thing that happened yesterday was I got to sit in with Sam's Spred Group at Agape and watch while someone else struggled to keep him clean and keep him from aspirating food and keep him from stealing food from someone else's plate. It's a frantic activity. She's really good at it and I trust that she takes the whole thing very seriously. It was like looking at myself as other people must see us when we eat at a restaurant. It looked really hard. It looked really beautiful because they obviously enjoyed each other. For the first time, I sort of understood why perfect strangers think it is okay to interrupt us in restaurants and say drippy things like "God had sent you a little angel". ("The Stars are God's Daisy Chain" - Madeline Basset) "Angel" is not the first image that comes to mind when you are wiping chocolate milk and snot out of your son's nose.
So I was thinking about this "standing back from my own life" thing. The closest I can come to that right now is the secret thoughts I have and shove away because they are not nice. For example, when I am talking to a new mother. She will talk about how tired she is and how the baby never stops crying and how nasty poopy diapers are. She is afraid the baby might have a little cold or an ear infection. I will give her grandmotherly sympathy and, if appropriate, suggestions. Usually she just needs encouragement and approval. I'm good at giving those.
But here are the thoughts I'm struggling NOT to think: "You WIMP! Your baby will be fine and 6 months from now you will be sleeping soundly." MY baby has grownup poop and pubic hair. Try changing THAT. (grumble, grumble) I have been changing diapers every day for the last 30+ years.
For 27+ years, I have gotten up in the middle of the night to be sure my child is still breathing and often sat beside him and waited too long for the next breath. It is routine for my husband or myself to get him up and do some physical therapy or connect him to some machine to stimulate his breathing.
I have ceaselessly watched my child with an eagle eye to see that he doesn't aspirate too much liquid. I have tried to get his other occasional caregivers to understand the life and death importance of feeding him appropriately. When I drop him off for a few hours at school or Adult Day Care I worry that they think I am over-reacting and will not take my instructions seriously.
I have slept in hospital beds beside him when he is hovering between life and death. I literally pull him back from the brink of death 3 or 4 times every year. I check his oxygen blood levels every night at least once, usually more. I have 3 machines which I use on him 2 or 3 times a day to keep him breathing. I have 3 more I can use if he needs them. I grind up everything he eats and then try to form the pureed food into something that doesn't look pureed because he doesn't like to eat pureed food. I have developed a kind of mental telepathy with him because he is non-verbal. I am the captain of a team of doctors who advise me, but defer to me as the primary care-giver. This is a responsibility I accept gravely and with terror. I just barely have a Bachelor's Degree! But I guess I deserve a doctorate in "Sam".
I worry that the roofers will light a cigarette while I am giving him oxygen and blow up the house. I have told them how dangerous it is over and over again and they say, "Yes, yes." But I still find cigarette butts in the garden under the eaves.
I clean blood and chocolate milk out of my son's ears so routinely that it doesn't even occur to me to call a doctor.
There are so many things that I deal with calmly at home without even thinking of calling the doctor. These are things that would have any other parent calling 911! But I know how to treat them and a trip to the ER is so hard on him. I went to the ER so many times early on. Now its only once every year or even less. This is partly because he is stronger and partly because I know what to do at home. It's much easier to treat him at home where we can all watch Kung Fu Panda and sleep in our own beds.
That ER hiatus may be drawing to a close, however. His health is very slowly deteriorating and there may come a time when frequent ER trips once again become routine. I try not to think about the future very often. If it happens, it will happen when it happens.
He looks so happy and "normal" because I have dedicated my life to keeping him that way. But people don't understand how fragile he is because he doesn't have tubes coming out of him. I have fought against tubes because I want him to be happy. I hope I have made the right decision. When he dies, I will worry that it was because I refused the tubes. But no one ever knows what would have happened if... He looks so happy, doesn't he?
Sam Care is wearing me out and I'm getting older. I see what happens when a mom dies at 82 or something and there is no provision for her child. It's terrible. Yet, here in Illinois, there really isn't any way to plan ahead. I worry about what happens if he doesn't die first. I worry about how I will continue to live without him if he does die first. I can't imagine living without him.
Wow. That is a lot of work. Maybe I am not a wimp.
But there are occasional days when I am too tired or too depressed to do his machines, or only do them once instead of 2 or 3 times. There are days when all he will eat is Ensure and I give up and take him out to IHOP because I know, nutritious or not, at least he will not go to bed hungry.
For 27+ years I have struggled with the question, "Is it really okay to take a break?" "If/When he dies, will it be because I missed a treatment here and there?" People are always telling me it is important to take care of myself. I see the logic of this. Where would Sam be if I got sick or died? Sam himself knows how important I am and worries if I seem to be sick or if I walk away from him in a public place. But the fact remains that every instant I spend on myself is time I didn't spend on him. What is the cost of that?
So we were talking about my life and my guilty feeling that I haven't accomplished much. I'm no Madame Curie and I sort of grew up thinking I should/could be. She (my therapist) said that I'm too close to my life to be able to stand away from it and say, "WOW. That's a lot of work." All I can see is that I'm getting more and more tired and frightened and that there are days when I really don't want to leave the house. I just want to stay home, take care of Sam and do something creative. And, the way my life is constructed, I can do that. Which makes me grateful but I wonder if I'm really pulling my own weight. Maybe I'm so far from being Madame Curie that I'm actually a wimp.
I should mention here that I shared this fear with my husband at dinner and he actually snorted! (A comforting sound) and said, "You are NOT a wimp. No one is Madame Curie." God Bless him. Since he gets up every morning and goes to a very difficult job without complaining, his opinion means a lot.
Another thing that happened yesterday was I got to sit in with Sam's Spred Group at Agape and watch while someone else struggled to keep him clean and keep him from aspirating food and keep him from stealing food from someone else's plate. It's a frantic activity. She's really good at it and I trust that she takes the whole thing very seriously. It was like looking at myself as other people must see us when we eat at a restaurant. It looked really hard. It looked really beautiful because they obviously enjoyed each other. For the first time, I sort of understood why perfect strangers think it is okay to interrupt us in restaurants and say drippy things like "God had sent you a little angel". ("The Stars are God's Daisy Chain" - Madeline Basset) "Angel" is not the first image that comes to mind when you are wiping chocolate milk and snot out of your son's nose.
So I was thinking about this "standing back from my own life" thing. The closest I can come to that right now is the secret thoughts I have and shove away because they are not nice. For example, when I am talking to a new mother. She will talk about how tired she is and how the baby never stops crying and how nasty poopy diapers are. She is afraid the baby might have a little cold or an ear infection. I will give her grandmotherly sympathy and, if appropriate, suggestions. Usually she just needs encouragement and approval. I'm good at giving those.
But here are the thoughts I'm struggling NOT to think: "You WIMP! Your baby will be fine and 6 months from now you will be sleeping soundly." MY baby has grownup poop and pubic hair. Try changing THAT. (grumble, grumble) I have been changing diapers every day for the last 30+ years.
For 27+ years, I have gotten up in the middle of the night to be sure my child is still breathing and often sat beside him and waited too long for the next breath. It is routine for my husband or myself to get him up and do some physical therapy or connect him to some machine to stimulate his breathing.
I have ceaselessly watched my child with an eagle eye to see that he doesn't aspirate too much liquid. I have tried to get his other occasional caregivers to understand the life and death importance of feeding him appropriately. When I drop him off for a few hours at school or Adult Day Care I worry that they think I am over-reacting and will not take my instructions seriously.
I have slept in hospital beds beside him when he is hovering between life and death. I literally pull him back from the brink of death 3 or 4 times every year. I check his oxygen blood levels every night at least once, usually more. I have 3 machines which I use on him 2 or 3 times a day to keep him breathing. I have 3 more I can use if he needs them. I grind up everything he eats and then try to form the pureed food into something that doesn't look pureed because he doesn't like to eat pureed food. I have developed a kind of mental telepathy with him because he is non-verbal. I am the captain of a team of doctors who advise me, but defer to me as the primary care-giver. This is a responsibility I accept gravely and with terror. I just barely have a Bachelor's Degree! But I guess I deserve a doctorate in "Sam".
I worry that the roofers will light a cigarette while I am giving him oxygen and blow up the house. I have told them how dangerous it is over and over again and they say, "Yes, yes." But I still find cigarette butts in the garden under the eaves.
I clean blood and chocolate milk out of my son's ears so routinely that it doesn't even occur to me to call a doctor.
There are so many things that I deal with calmly at home without even thinking of calling the doctor. These are things that would have any other parent calling 911! But I know how to treat them and a trip to the ER is so hard on him. I went to the ER so many times early on. Now its only once every year or even less. This is partly because he is stronger and partly because I know what to do at home. It's much easier to treat him at home where we can all watch Kung Fu Panda and sleep in our own beds.
That ER hiatus may be drawing to a close, however. His health is very slowly deteriorating and there may come a time when frequent ER trips once again become routine. I try not to think about the future very often. If it happens, it will happen when it happens.
He looks so happy and "normal" because I have dedicated my life to keeping him that way. But people don't understand how fragile he is because he doesn't have tubes coming out of him. I have fought against tubes because I want him to be happy. I hope I have made the right decision. When he dies, I will worry that it was because I refused the tubes. But no one ever knows what would have happened if... He looks so happy, doesn't he?
Sam Care is wearing me out and I'm getting older. I see what happens when a mom dies at 82 or something and there is no provision for her child. It's terrible. Yet, here in Illinois, there really isn't any way to plan ahead. I worry about what happens if he doesn't die first. I worry about how I will continue to live without him if he does die first. I can't imagine living without him.
Wow. That is a lot of work. Maybe I am not a wimp.
But there are occasional days when I am too tired or too depressed to do his machines, or only do them once instead of 2 or 3 times. There are days when all he will eat is Ensure and I give up and take him out to IHOP because I know, nutritious or not, at least he will not go to bed hungry.
For 27+ years I have struggled with the question, "Is it really okay to take a break?" "If/When he dies, will it be because I missed a treatment here and there?" People are always telling me it is important to take care of myself. I see the logic of this. Where would Sam be if I got sick or died? Sam himself knows how important I am and worries if I seem to be sick or if I walk away from him in a public place. But the fact remains that every instant I spend on myself is time I didn't spend on him. What is the cost of that?
Saturday, September 19, 2009
Adventures in Gauge
Well, I don't particularly like knitting swatches. I'm always afraid it will use up precious yarn and I'll be a cuff short on the sweater. I also buy an extra skein of whatever I'm knitting - so I have quite a stash of single skeins. It is perhaps fortunate that I like knitting toys and that I have so many children in my life.
HOWEVER. I recently completed a sweater for my granddaughter, Zora. I used the recommended needles and, for the first time in my life, the recommended yarn. I knit a tiny token swatch and discovered my knitting was a couple of stitches bigger than the gauge. A couple of stitches! She's a toddler! Who cares? I figured, at the rate I knit, it was better to go a little large.
It is a wonderful pattern and fun to knit. So I finished in record time and have one and one half skeins left over. I think she'll be wearing this when she's all grown up and 9 months pregnant!
I'm knitting a matching tiny gansey with the left over yarn and I have completed an amigurumi and a microtine rodent since. (known to lay people as a rat) When you knit toys gauge doesn't matter and you finish quickly. With a couple of quick successes under my belt, now I'm ready to start knitting a sweater for her cousin. Tahreq is 8 and isn't growing as fast as Zora. So I thought I'd check my gauge. The pattern calls for a size 3 yarn. I'm in love with Knit Picks Shine Sport yarn which is a 2. The pattern calls for size 7 needles and a gauge of 26 stitches to 4 inches. I'm on swatch number 4 and have moved all the way down to a size 3. I think this one will do it. At size four I was doing 27 stitches. I figure if I had actually purchased a size 3 yarn and used size 7 needles, I would have made a Paul Bunyan sweater. This tedious swatch thing is kind of important.
HOWEVER. I recently completed a sweater for my granddaughter, Zora. I used the recommended needles and, for the first time in my life, the recommended yarn. I knit a tiny token swatch and discovered my knitting was a couple of stitches bigger than the gauge. A couple of stitches! She's a toddler! Who cares? I figured, at the rate I knit, it was better to go a little large.
It is a wonderful pattern and fun to knit. So I finished in record time and have one and one half skeins left over. I think she'll be wearing this when she's all grown up and 9 months pregnant!I'm knitting a matching tiny gansey with the left over yarn and I have completed an amigurumi and a microtine rodent since. (known to lay people as a rat) When you knit toys gauge doesn't matter and you finish quickly. With a couple of quick successes under my belt, now I'm ready to start knitting a sweater for her cousin. Tahreq is 8 and isn't growing as fast as Zora. So I thought I'd check my gauge. The pattern calls for a size 3 yarn. I'm in love with Knit Picks Shine Sport yarn which is a 2. The pattern calls for size 7 needles and a gauge of 26 stitches to 4 inches. I'm on swatch number 4 and have moved all the way down to a size 3. I think this one will do it. At size four I was doing 27 stitches. I figure if I had actually purchased a size 3 yarn and used size 7 needles, I would have made a Paul Bunyan sweater. This tedious swatch thing is kind of important.
Wednesday, September 16, 2009
Paleontologist
So here are the top ten things I learned as the daughter of a Paleontologist:
10 - Never go into your parent's room without permission. You might kill a shrew.
9 - It is ok to get dirty and dig up the backyard as long as you actually find something
8 - Always check your shoes for scorpions before you put them on.
7 - Dinosaurs are boring. The really good stuff came later.
6 - When people ask you the difference between paleontology and archeology the easiest way to explain it is Jurassic Park - Paleontology, Indiana Jones - Archeology
5 - Your teachers will tell you all kinds of interesting facts about bugs except the most important thing which is - Ants horde mouse jaws
4 - Never ask your dad to help you with your science fair project. Not only will the result be something you don't understand and can't explain but it will also be something the science teacher can't understand. Teachers don't like that.
3 - Tarantulas can't kill you. Those movies are not made by zoologists.
2 - The correct name is Microtine Rodents and don't let anyone tell you different.
1 - Always keep your hands and feet where you can see them. If you forget, don't blame the rattlesnake when it bites you.
10 - Never go into your parent's room without permission. You might kill a shrew.
9 - It is ok to get dirty and dig up the backyard as long as you actually find something
8 - Always check your shoes for scorpions before you put them on.
7 - Dinosaurs are boring. The really good stuff came later.
6 - When people ask you the difference between paleontology and archeology the easiest way to explain it is Jurassic Park - Paleontology, Indiana Jones - Archeology
5 - Your teachers will tell you all kinds of interesting facts about bugs except the most important thing which is - Ants horde mouse jaws
4 - Never ask your dad to help you with your science fair project. Not only will the result be something you don't understand and can't explain but it will also be something the science teacher can't understand. Teachers don't like that.
3 - Tarantulas can't kill you. Those movies are not made by zoologists.
2 - The correct name is Microtine Rodents and don't let anyone tell you different.
1 - Always keep your hands and feet where you can see them. If you forget, don't blame the rattlesnake when it bites you.
Dysphagia
It's always a challenge to figure out what to feed Sam. He doesn't chew and he has all these aspiration issues. Food goes up his nose and down into his lungs if we aren't very careful. So I puree everything and thicken liquids. But he doesn't like food that looks different from everyone else's or is just plain grey and no fun.
Tonight we had Panda Express. You get two entrees and one side per person. So that makes 6 different entrees. I split them up so we each had a bit of each of these. I ordered one side of rice and two steamed vegetables. For Sam, I made a big platter with steamed rice in the center. Then all around the outside I had a little bit of all the different things we had. I ground them all separately and spooned them over the rice. It looked very fancy and delicious. Each entree had a little bit different color.
When something is too dry, I add a little bit of half and half and it gets nice and smooth. Calories are not his issue...
He was very interested and happy to eat with us!
Tonight we had Panda Express. You get two entrees and one side per person. So that makes 6 different entrees. I split them up so we each had a bit of each of these. I ordered one side of rice and two steamed vegetables. For Sam, I made a big platter with steamed rice in the center. Then all around the outside I had a little bit of all the different things we had. I ground them all separately and spooned them over the rice. It looked very fancy and delicious. Each entree had a little bit different color.
When something is too dry, I add a little bit of half and half and it gets nice and smooth. Calories are not his issue...
He was very interested and happy to eat with us!
Tuesday, September 15, 2009
Mom of a Kid with Profound Disabilties
Ok this is hard. It's the second week of Program/School and with my eternal optimism, I filled it with appointments for ME thinking I would surely be free to do things without my sidekick. Last week he only made it to program one day because his sleeping patterns are way off and he had too much fluid in his lungs.
Rosa, the aid in his room, is a very nice woman who is convinced I'm over protective since he is always healthy and cheerful on the days I take him. She always says, "See? He is FINE here. He LIKES it here. He ate really good and he laughed all day long." So I wonder if she's right. Maybe I should make him go more often. Plus, they only get paid on the days he goes and they are really hurting for money in this crummy state, so I feel bad about that.
Yesterday was all about me. I took him to Esperanza and went to have my hair done. It was awesome. I really love my new hairdresser and going to her is the ultimate luxury in my life. When I went to pick him up, he smiled dimly at me and put his head down and went to sleep. Rosa told me all about what a great day he had, but all I could see was his blue fingernails.
But I had an appointment at Costco to get my new hearing aids. So I took him to Starbucks, which he loves, and bought him some caffeine. That sometimes perks up his lungs a little until we can get him home and hook him up to the oxygen. Then we went to get my hearing aids. (Which are going to take some getting used to, but I'm really excited about. They match my pretty hair!) Then I thought we'd pick up a few things since we were there. He was NOT happy about this. He grumbled and complained all the way around the store. He also stopped to sample snacks at every station throughout the store. So I thought he was just hungry. We bought a minimum of stuff and came straight home. By this time he was making the very loud, distressed honking noise he makes when something is really wrong. But he wouldn't eat and he wouldn't settle down.
His oxygen was not that low but he did have a junky cough. What are they feeding him at school? Is he aspirating? Rosa says that he drinks a lot of tea. Is he aspirating it? Are they feeding him carefully when he eats so much? He doesn't really care how much he aspirates or how much food goes up his nose. You have to watch him. And he is already having trouble with his lungs lately. (Allergies? It does seem to be worse in early fall and late winter) Or is his "laughing all day long" actually that manic laughter that is really a desperate plea for help? He gets this weird out of control laugh when he is upset about something or really worried about something. Do they know that?
Bath, chest vibrator vest, nasal spray, nebulizer, chest PT, dinner, more chest PT. Nothing helps. 10PM I rip the hearing aids out. The honking is really getting on my nerves and I certainly don't want to hear it as loud as the hearing aids make it. 11PM still honking. Oxygen getting lower. I hook him up to the oxygen machine and keep checking. I put soft music on the IPod and hook him up to that, too. Still honking. 12:30 AM we're both exhausted. I notice he is rubbing his feet together as if they hurt him. Could it be Athlete's Foot? He gets that a lot. I put cream on his feet and he sighs deeply and changes his tune to his (also loud and annoying) going to sleep hymn. 1:30 AM still singing but much softer. I give up and go to bed.
So it's almost 8 AM now. I have to decide what to do today. I have a dentist's appointment. I broke a tooth almost a YEAR ago and I really need to get it fixed. I can't take him with me to the dentist appointment. He really freaks out when we go somewhere and I am the patient. He doesn't like knowing I'm vulnerable. Well, you can imagine why. He knows he'd be in really big trouble if anything happened to me! (There's another blog topic - what happens when something happens to mom?)
So obviously he was in major crisis of some kind yesterday. Was it a lung crisis or an Athlete's Foot crisis or both? He's sound asleep with his head hanging over the edge of the bed now which usually means he's having trouble with his sinuses. Do I get him dressed in his sleep, grab an Ensure, drive through McDonald's and take him to Esperanza? He will probably sleep most of the time. Or should I just let him sleep here and give him extra machine treatments at home? And reschedule the dentist - again.
AM I over reacting? Or am I UNDER reacting because I'm selfish enough to want a new, expensive crown in my head. (Hair cut, hearing aids and now I want a crown. And I don't even have a job! Next I'll be eating bon bons and watching soap operas) Magic thinking: am I somehow causing his distress because I feel guilty about being so selfish?
Well, writing all this out helps. The problem is that last night is a fairly common sort of night around here. So I get to taking them for granted. I think of them as practically "normal". But when you look at it objectively, what mother in her right mind would send a kid to school after a night like that? It really doesn't matter what Rosa thinks of me, I'm in charge and I'm supposed to be the expert on Sam. Sam is my job. The buck stops here.
I am so grateful for my dentist and his wonderful receptionist. I know I can reschedule and they will be understanding. I need to give Sam some extra treatments today and watch him to see if I can figure out what is going on. The crown can wait. Again.
Rosa, the aid in his room, is a very nice woman who is convinced I'm over protective since he is always healthy and cheerful on the days I take him. She always says, "See? He is FINE here. He LIKES it here. He ate really good and he laughed all day long." So I wonder if she's right. Maybe I should make him go more often. Plus, they only get paid on the days he goes and they are really hurting for money in this crummy state, so I feel bad about that.
Yesterday was all about me. I took him to Esperanza and went to have my hair done. It was awesome. I really love my new hairdresser and going to her is the ultimate luxury in my life. When I went to pick him up, he smiled dimly at me and put his head down and went to sleep. Rosa told me all about what a great day he had, but all I could see was his blue fingernails.
But I had an appointment at Costco to get my new hearing aids. So I took him to Starbucks, which he loves, and bought him some caffeine. That sometimes perks up his lungs a little until we can get him home and hook him up to the oxygen. Then we went to get my hearing aids. (Which are going to take some getting used to, but I'm really excited about. They match my pretty hair!) Then I thought we'd pick up a few things since we were there. He was NOT happy about this. He grumbled and complained all the way around the store. He also stopped to sample snacks at every station throughout the store. So I thought he was just hungry. We bought a minimum of stuff and came straight home. By this time he was making the very loud, distressed honking noise he makes when something is really wrong. But he wouldn't eat and he wouldn't settle down.
His oxygen was not that low but he did have a junky cough. What are they feeding him at school? Is he aspirating? Rosa says that he drinks a lot of tea. Is he aspirating it? Are they feeding him carefully when he eats so much? He doesn't really care how much he aspirates or how much food goes up his nose. You have to watch him. And he is already having trouble with his lungs lately. (Allergies? It does seem to be worse in early fall and late winter) Or is his "laughing all day long" actually that manic laughter that is really a desperate plea for help? He gets this weird out of control laugh when he is upset about something or really worried about something. Do they know that?
Bath, chest vibrator vest, nasal spray, nebulizer, chest PT, dinner, more chest PT. Nothing helps. 10PM I rip the hearing aids out. The honking is really getting on my nerves and I certainly don't want to hear it as loud as the hearing aids make it. 11PM still honking. Oxygen getting lower. I hook him up to the oxygen machine and keep checking. I put soft music on the IPod and hook him up to that, too. Still honking. 12:30 AM we're both exhausted. I notice he is rubbing his feet together as if they hurt him. Could it be Athlete's Foot? He gets that a lot. I put cream on his feet and he sighs deeply and changes his tune to his (also loud and annoying) going to sleep hymn. 1:30 AM still singing but much softer. I give up and go to bed.
So it's almost 8 AM now. I have to decide what to do today. I have a dentist's appointment. I broke a tooth almost a YEAR ago and I really need to get it fixed. I can't take him with me to the dentist appointment. He really freaks out when we go somewhere and I am the patient. He doesn't like knowing I'm vulnerable. Well, you can imagine why. He knows he'd be in really big trouble if anything happened to me! (There's another blog topic - what happens when something happens to mom?)
So obviously he was in major crisis of some kind yesterday. Was it a lung crisis or an Athlete's Foot crisis or both? He's sound asleep with his head hanging over the edge of the bed now which usually means he's having trouble with his sinuses. Do I get him dressed in his sleep, grab an Ensure, drive through McDonald's and take him to Esperanza? He will probably sleep most of the time. Or should I just let him sleep here and give him extra machine treatments at home? And reschedule the dentist - again.
AM I over reacting? Or am I UNDER reacting because I'm selfish enough to want a new, expensive crown in my head. (Hair cut, hearing aids and now I want a crown. And I don't even have a job! Next I'll be eating bon bons and watching soap operas) Magic thinking: am I somehow causing his distress because I feel guilty about being so selfish?
Well, writing all this out helps. The problem is that last night is a fairly common sort of night around here. So I get to taking them for granted. I think of them as practically "normal". But when you look at it objectively, what mother in her right mind would send a kid to school after a night like that? It really doesn't matter what Rosa thinks of me, I'm in charge and I'm supposed to be the expert on Sam. Sam is my job. The buck stops here.
I am so grateful for my dentist and his wonderful receptionist. I know I can reschedule and they will be understanding. I need to give Sam some extra treatments today and watch him to see if I can figure out what is going on. The crown can wait. Again.
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