Thursday, December 31, 2009

Cleaning House

 Because he doesn't cook, Charley will never remember that the spatula goes in the drawer by the stove, but the measuring spoons and cups go in the drawer under the counter.  He will never remember that bowls go on the second shelf over the sink and not in the pantry.  Or that the blue mugs hang in one place and the brown mugs in another, and so on.  He doesn't really care where things go as long as they are "away" and he doesn't really understand why I care.  So is there any point in reminding him?  It sounds like I am nagging or like I think it is my kitchen and he really doesn't like to feel like he is a guest in his own house.  I think it is partly that he grew up as the youngest in a house of women and so he really doesn't like women telling him what to do.  And yet, washing dishes is something he feels strongly is his chore. I appreciate that.  So I have three choices.
  1. Notice when he washes the dishes and offer to put things away.  This is a great option.  We get to hang out together and chat about Ken Wilbur and Ekhart Tolle and saxophones and Special Ed kids as I put things where I think they belong.
  2. When I walk through the kitchen and see something in the wrong place, put it where it belongs.  This is a sort of good option.
  3. Live in a perpetual "Easter Egg Hunt" as I frantically search for the spoon to stir the beans before they burn and lose my temper when I burn my hand pulling the biscuits out of the oven because the oven mitt has gone wandering again and all I can find quickly is a wet washcloth which doesn't really work.  This is probably the worst option and yet it is the one I "fall back on" continually.  
I'm not a very good housekeeper, but it seems to me that working smarter is a better solution than working harder - since I already get only 5 or 6 hours of sleep a night and I'm always tired!  But working smarter seems to take a non-stop vigilance.  So many things require ceaseless vigilance.  Like dieting.

Suggestions anyone???

Sunday, December 27, 2009

If you aren't busy being born, you are busy dying

For over a year now, I've been focused on the fact that Sam is dying.  If the sleep apnea doesn't get him, the bronchiecstasis will.  He's a little weaker today than he was a year ago.  He is missing more and more days at Esperanza because we just can't get it together get him strong enough to go.

A couple of weeks ago I started thinking that this terror of his death has me "stuck".  I am missing out on the joy of today because of the terror of some future event.  He might go another 50 years or he might die tomorrow.  But hold on, that is also true of ME.  That's... NORMAL!  Well, gosh.  

In the meantime, what IS extraordinary is that I love my job.  I get to take care of Sam.  I get to love Sam.  I get to wake him up and see his eyes crinkle up with joy when he sees me.  

I live with a secret.  I look fairly common place, but in my heart is a source of joy and pain that is absolutely profound.  The same thing that brings me my greatest joy is the thing that is the source of my deepest fear and pain.  I have a son who is full of life and joy and who is sick more often than he is well and who is going to die.  Taking care of him is the greatest honor of my life, my highest achievement and it's not going to make me famous or solve world hunger or stop war.  (Sorry, Dad.)

Caregiving transforms me.  Caregiving is my spiritual practice.  Caregiving is Zen.

I rented "How to Cook Your Life" and watched it last night. I love it.  Edward Espe Brown is so sincere and transparent.  He recites a poem from the last letter his mom wrote before she died.  It's by Donald Babcock and first appeared in the New Yorker on October 4, 1947 (V.23, No. 33, pp 38-39)

The Little Duck
Now we're going to look at something pretty special.
It is a duck riding the ocean a hundred feet beyond the surf.
No, it isn't a gull. 
A gull always has a raucous touch about him.
This is some sort of duck, and he cuddles in the swells.
He isn't cold, and he is thinking things over.
There is a big heaving in the Atlantic,
And he is part of it.
He looks a bit like a mandarin, or the Lord Buddha meditating under the Bo tree.
But he has hardly enough above the eyes to be a philosopher.
He has poise, however, which is what philosophers must have.
He can rest while the Atlantic heaves, because he rests in the Atlantic.
Probably he doesn't know how large the ocean is.
And neither do you.
But he realizes it.
And what does he do, I ask you.  He sits down in it.
He reposes in the immediate as if it were infinity - which it is.
That is religion, and the duck has it.
He has made himself a part of the boundless, by easing into it just where it touches him.

Maybe I resonate with this poem because I spent so much of my youth cuddling in the gentle heaves of the mighty Pacific, past the breakers, and feeling rocked by the womb of the world. But I do resonate with it.  This poem came to me last night when I needed it.  I am the primary caregiver to a philosopher who is just like this duck.  I can learn from him how to repose in the infinity which is now and ease into the the boundlessness of today.  That is religion.  That is something I can do.  Today just might be the best day of the rest of my life, and today is beautiful.  I get to go feed Sam.


Tuesday, December 22, 2009

Speaking of Angels

Speaking of angels, here's a video my friend Himmat sent me.


Well, it happened again.  The three of us went to a wonderful concert by Luis and Roy and enjoyed chatting with a lovely lady who told me I was "an angel" for being Sam's mom.  I don't understand why people feel that they need to tell me that.  I realize they think they are complimenting me, but for some reason it just makes me cranky.

Instead of speculating and grumbling, however, I have decided to write down some true stories about "angels".   

Ash Wednesday
Sam and I were walking down the center aisle to receive our annual smudge when suddenly he stopped and refused to go any further.  He reached into the pew beside us and, with his best smile, touched the woman sitting there who was praying earnestly.  As she stared into his smiling face, tears began to flow down her cheeks.  Sam made it very clear that he wanted her to get up and come with us.  People were backing up behind us, unsure whether to "cut in line" or not.  Rather than cause a further scene, she got out of the pew and came with us.  We got up to the altar rail and Sam knelt down beside her and began to babble and stroke her arm.  She just cried and cried and said things like, "Oh thank you."  Then the pastor came by and, instead of just doing his thing and moving on, he knelt on the other side of the rail and said "Thank you Sam for teaching all of us so much about compassion." I don't have the faintest idea what that was all about.  I'm just the mother.  I don't mean to be irreverent  here, but I kind of know what Mary must have felt as she watched her son do weird and miraculous things.  I'm  not the angel.  I'm just the amazed and fortunate by-stander.

Marriage Counselling
I play cuatro.  I love cuatro.  One of my favorite cuatro players is Queque Domenich.  Amazing guy.  Check him out on iTunes.  A few years ago, I got to play "back up" for him along with 200 other cuatro students at the graduation ceremony for the Chicago Cuatro Orchestra Program.  (ok I'm practically old enough to be the grandmother of any of the other students, but I was just as excited as they were.)  It was incredible.  We didn't know he was going to be there.  I will never forget the thrill of playing with him that night.   Afterward, we all lined up and he patiently signed all our cuatros. 

This is the cuatro that my husband misplaced.  I was devastated.  

The next day, when I took Sam to Esperanza, I was still very upset.  Eddie, one of the verbal guys in the room, noticed and asked me what was upsetting me.  I told them and asked, "Do you think that losing such a precious cuatro is grounds for divorce?"  I was sort of kidding.  But they took me very seriously.  When I came back to get Sam that afternoon, they had worked out an answer.  No. Losing one cuatro, no matter how precious, is not grounds for divorce.  5 is the magic number.  If Charley loses 5 cuatros then I can divorce him.  In the meantime, some retribution must be taken for the loss of this one precious cuatro.  The consensus was that Charley should pay for me to take kickboxing lessons.  

This advice made me laugh, which always helps a bad mood.  But when you think about it, it is pretty good advice.  In the room they have one of those big hanging bags that you can kick and hit, and have found it very useful for working out frustrations.  They recommended I try it.  More than that, it is incredibly healing to have someone - or a whole room of someone's - take my feelings seriously.

Murder Most Foul
When Billy called to tell me that our dad had been brutally murdered by a couple of crack addicts as they robbed his home, I went into shock.  I didn't know what to do with myself or what to feel.  I called Kelly, the weaving workshop instructor at Esperanza, to tell her that I wasn't going to be able to volunteer for awhile.  My friend Phillip took the phone away from Kelly.  He knew just what to say.  "Your father has died?  I bet you are feeling very sad right now, aren't you?"  He went on talking very matter of factly about my grief and, as he spoke, I started to feel again.  I started to cry for my dad.  Then Phillip took the cell phone all around the second floor of Esperanza finding people who knew me and telling them, "Jeanne's father has died.  Talk to her."  They all had something to say to me.  Sometimes it was in Spanish, and sometimes it was in some personal language that no one has figured out yet, but they all sounded caring.  I cried and cried and cried as they kept on passing the phone from person to person.  And that was the experience that gave me the strength to face all the stuff that came next.  

These people have cognitive disabilities or sometimes it is called cognitive challenges or mental retardation.  But whatever you call it, it doesn't impact their heart and their feelings.  They give so much joy and love and wisdom.  It is in our hearts that we feel the impact of miracles and they understand heart better than most of us.  These people are a gift from God to me and they have changed my life for the better.  I think that makes THEM the angels.  I'm just a recipient of their grace.

Bobby Tirelli, another friend from Esperanza, says in his new book, "I like angels.  They're real entities of love.  They've saved my life a hundred million times."  Amen, Bobby.


Wednesday, December 02, 2009

Amazing and Apparently True Repenning Stories

OK I promised to record some of my childhood stories.  Here is the first one.  Remember the Repenning Family Motto: "Never let the truth stand in the way of a good story."  I think this is mostly true...

Whenever I am at one of those parties where they ask you to tell something about yourself that no one knows I say that, oddly enough, I was the ONLY girl in my high school who had an elephant buried in my back yard.  In all the years of saying this, I have only ever met one other person who had an elephant buried in their backyard.  They were from South Africa someplace.  I'm from a suburb of San Francisco.  Elephants buried in back yards was unusual in Mountain View.  Now that it's called "Silicon Valley" I assume it is even more unusual.

My dad was a paleontologist, zoologist and geologist.  When an animal died in the San Francisco Zoo they would give him first dibs.  He would often bring them home and display them on the front lawn for a day or two.  My husband remembers vividly our first date when he arrived to pick me up and there was a ram's head bleeding on the front walk.  He got the message and was VERY careful to get me home on time.  Another time Dad brought home two zebras and propped them up under the plum tree on the front lawn.  It looked very much like an African Savannah.  My mother says a police car drove by very slowly several times.  Mountain View had very strict pet codes, but nothing about dead zebras on the front lawn, I guess.

But back to the elephant.  This was back in the days when Stanford was building the Stanford Linear Accelerator.  This is a mile long underground tube.  Scientists stick an atom up on a dart board at one end of the tube and then aim an electron at it from the other end a mile away.  Obviously, it has to be pretty accurate.  The guy digging the hole, however, made a 100 meter error and cut off the head of some prehistoric beast.  Fortunately they discovered the error and went back to digging the tube and left the headless beast for my dad to identify and name.  He named it the Paleoparadoxia and I spent a lot of my junior high years crawling around in it's ribcage while he and Adele Panofsky excavated it.  

At the time they found this beast, my dad was engaged in the  study of shrews - a  VERY tiny rodent.  He kept some shrews in his bedroom in an aquarium.  They die of fright if you startle them, so we were forbidden to go into my parent's bedroom.  He wanted to develop a bio-chronology of these tiny rodents that would be similar to "Petersen's Field Guides."  Paleontologists could carry his field guide around in their back pockets and get a pretty accurate date for any fossil beds they might find.  It's the teeth that are important.  Remember that in case I write another chapter.

But back to the elephant.  With great reluctance, my father was convinced to put aside his microtene rodents and turn to this gargantuan thing-a-ma-bob and it's modern relatives.  This was how he became an expert in elephant seals and demostylians.  It was at this juncture an elephant died at the San Francisco Zoo.  He was really only interested in the feet, so he drove up there to collect them.  The zookeeper just pointed him to the pen and left him.

It was a dark and stormy night.  He pointed the headlights of his woody station wagon at the elephant and got out his tool kit.  As the storm raged around him, he managed to saw off the parts he needed and put them in great big garbage bags and stuffed them into the back of the woody.  Can't you just see the movie footage?  Lightning flashes and winds howl as our mad scientist waves his saw defiantly at the sky while the elephant's mate on the other side of a flimsy bamboo fence trumpets in a mad rage.  It doesn't actually thunder and lightning in San Francisco, but I always see lightning when I picture this.

Now in normal circumstances, after amusing himself and the neighbors, animals from the zoo were taken to the "bone yard".  This was a fenced off portion of our back yard presided over, appropriately enough, by our raven, Honker and decorated with fierce witch doctor masks.  In the bone yard were several barbeques and a large cauldron.  Really large.  I mean big enough to boil a missionary.  Here was where he would render the animal down to bare bones to study.  Unfortunately, he discovered that elephants are so big that even the feet will not fit in a large cauldron.

So my ever resourceful father went to the local hardware store, bought several shovels and gathered all the kids in the neighborhood.  "Find China" he said and we began.  We dug and dug and dug.  We made roads down into the hole.  We had a perfectly wonderful time until Barbara fell down and broke her arm.  That was the point where he figured we had dug far enough.  He unwrapped the elephant feet and dropped them in the hole.  And left them there for several years until they were clean.

And that, O Best Beloved, is how I came to have an elephant buried in my back yard.


Winter Approaches

It is December 2 and it just might snow tonight.  I'm mulching the garden and winding up hoses. But this rose has decided to bloom.  It strikes me that this is a pretty good life attitude: Creative, optimistic and defiant.

Wednesday, November 18, 2009


Bonita is my Amazon Red parrot. I've had her three years now and she just turned 20. Two years ago we both had our annual physical and we both were morbidly obese. We both had very high cholesterol and we both had sore joints. She also had liver disease and I had borderline Type 2 diabetes.

I went to Heartland Spa - which is wonderful if you are looking for a great, healthy place to get away - and talked to Drs. Arthur and McKinley at McKinley Chiropractic and Wellness Center. (Also strongly recommended, by the way) With their encouragement, Bonita and I embarked on a fairly serious effort to change our eating habits and get more exercise.

Fast forward to today. Both of us have very healthy cholesterol levels. Both of us have much improved joints. I don't have anything resembling diabetes and she has completely normal liver function. She is also a healthy weight. Of course, I am still morbidly obese, but I console myself with the fact that I have a lot more weight to lose than she did. Plus she is only 20 while I am, well, a lot older.

Healthy food and exercise. That's all it takes. Now my goal is to get "Morbidly obese" off my record. Her goal is to maintain her healthy habits and learn to land without crashing into things. Did you ever see the way they land on 321 Penguins??? Yeah. Not pretty.

Monday, November 02, 2009

Charley's Reading List

I enjoy eccentric people - people who don't remind me of anyone but themselves. I think that must be at least part of why I married Charley. This morning there are 5 books on the bathroom floor tht were not there when I went to bed last night. This must mean Charley had a bad night. It might also mean that Sam had a bad night and Charley spent much of the night in the bathroom steaming Sam. Anyway, here are the 5 books Charley found essential companions in his long night: The Naked Sun - Isaac Asimov, True Believer - Nicholas Sparks, In the Company of Cheerful Ladies - Alexander McCall Smith, Zen Mind, Beginner's Mind - Shunru Suzuki and something in Russian, I believe it is the New Testament but I don't read Russian myself.

Ya just gotta love a guy that eclectic.

Monday, October 19, 2009


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.


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.

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?

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.

Wednesday, September 16, 2009


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.


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!

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.

Saturday, September 12, 2009

Sam's Health Issues

I spend a lot of time and energy pretending we're just like everyone else. Sam may be short, but he's other wise normal. But that's just denial. It isn't normal for a mom to change her 27 year old son's diapers for one thing. It isn't normal for a 27 year old son and his mom to have such a GREAT time singing along with Elmo. Every year we have what's called a "Staffing" at Esperanza and it starts with a conversation about his strengths. The first thing mentioned every year regardless of who is participating is his smile. He really warms a room. The second is usually something about his delight in buttons and things that vibrate.

He misses about half of the school year because I just can't get all the things balanced that are required to keep him healthy. So just for a minute, I'd like to "go public" with what I have to do every day to keep him going. First of all there's food. I have to puree every thing and thicken most liquids before he gets them. But he doesn't like baby food or food that looks or tastes boring. So I have to figure out ways to make pureed food look good. We also go out to dinner a lot because he always eats well at restaurants. There's a limited amount of things he can eat at restaurants. He usually has a cheese omelete and pancakes drenched in butter and syrup. I make sure he gets 3 Ensure or Boost a day.

I change him, dress him, brush his teeth, wash him and clean up his messes. I try to figure out things to keep him occupied besides watching videos and sitting on his bed all day with a vibrating toothbrush. He WILL sit on his bed and drool with a toothbrush unless I motivate him to do something else.

His medical issues require several machines to keep him going.
First: Sleep Apnea. He needs to get at least 4 hours of good sleep in every 24 or he will get very sick. Unfortunately, it's usually somewhere between 4 am and 1pm. I've been trying to adjust this pattern his whole life with only partial success. We tried all last year to get him used to the bi-pap machine in the hopes that this would help him sleep more. I tried putting it on him when he went to bed. He would wear it until I left the room. I tried putting it on him an hour after he went to sleep. But that meant staying up until he went to sleep. And he doesn't go to sleep until early morning. So I tried going to bed and getting up at 4 am and putting it on. He wore it for a while, but it was always off when I got up at 6. So I tried putting it on at 6. This worked for awhile. But eventually he just started getting up at 6 with me. So I went back to getting up at 4 and he got so he would rip it off the instant I put it on him. I leaving the machine (which is very loud) on with out putting it on him for a couple of nights and then putting it on him again. But he still took it off the minute my back was turned. I started seeing snakes in the corner of the room and crying at nothing at all and basically losing my mind from lack of sleep. So now I check his oxygen at night and if it's low, I put him on oxygen all night. He tolerates that okay. I also check it at 6 am to be sure it isn't low. It is usually fine. I want it to be between 89 and 95. If it gets too high, the brain thinks it can stop breathing and that makes the CO2 levels go up.

The biggest danger from sleep apnea is the CO2 blood level that develops which can actually kill you if it gets too high. He recently had an arterial blood gas test which showed that his CO2 level is the same as it was a year ago. I think this means that there's no point in continuing to try to adjust to the bi-pap machine and I'm going to ask the doctor if we can get rid of it. Then we can go back to the same problems we've had his whole life - which in retrospect were better than this last year when I was trying so hard to fix them! I think his CO2 levels have been gradually rising over his entire life and we should continue to monitor them. When and if they get significantly higher, we'll re-address the bi-pap machine and even consider a respirator that connects to his throat at night.

Second: Bronchiectsasis. He frequently has so much mucus that he can't breathe and gathers in huge quantities in his lungs making it difficult to breathe and easy to develop pneumonia. This is not cystic fibrosis but it is very similar. We don't know why he develops so much mucus. We have a number of machines to address this problem and they must be done in the morning when he wakes up and at night before bed and sometimes when he gets home from school. Going through the whole routine can take 30-45 minutes. But even when I do them faithfully, he still gets too much mucus sometimes and then I have to keep him home to monitor him. We have a nebulizer through which we give him medication to open his lungs up and make them stronger. We have a nasal wash machine and we have a chest vibrator that was developed for children with cysctic fibrosis. We also do a lot of manual chest PT. We have a suction device to help when he's got stuff stuck in the back of his throat. (Mostly mucus)

Third: Aspiration and swallowing difficulties. We had a swallow study done this summer and discovered that WHEN HE IS FED CAREFULLY he doesn't aspirate food. Obviously, aspirating food into his lungs is a very dangerous thing because he already has challenges in his lungs. HOWEVER if he is given thickened liquids or liquids in a commuter mug or sippy cup and purreed or very soft foods, he doesn't aspirate. Cake and donuts must ALWAYS be made soggy before he eats them. He must not have anything "crumbly" because it is easy to aspirate. There is a Mexican cake called Dulce de Tres Leche that is the perfect consistency. I always think of that cake when I am adding liquid to his cakes. For example, when we go to Starbucks, I order him a Traditional coffee Cake and a Mocha frappichino in the bottle. Then I pour the frappichino into the coffee cake until it is soggy. It tastes like Tiramisu and he can eat it just fine.

Food does go up his nose if he has more than about a teaspoon full of food in his mouth at a time or if it is the wrong consistency. This means more mucus, infected ears and possibly aspiration into his lungs although this has not been seen in the tests. Again, careful monitoring of his eating is essential. We are considering botox treatments to decrease the amount of saliva in his mouth hoping that helps. But insurance may not pay for it.

So he gets sick when his lungs are compromised by aspiration or just an accumulation of mucus or when he hasn't been getting enough quality sleep. He also gets sick when his weight goes below 75 pounds. (This makes my grocery shopping odd - I buy low calorie, low fat stuff for me and the opposite for him. And try not to eat his food!)

I also take him to Target and we look at stuff for hours and then we meet Eileen at Starbucks. See, it's not all work and no play!

Okay. So I've said it. Now I'll go back to pretending this is just a lot of fun.

Sunday, September 06, 2009

White People

"White people can help us but they cannot join us." - Malcom X

Or anyway Denzel Washington said it in the movie by Spike Lee.

The one year of my life I didn't date Charley, I did briefly hang out with the president of the Black Student Union. That was around 1970. I went to a rally he ran for Louis Farrakhan. I didn't notice I was the only white person in the auditorium until practically the end when I began to notice the angry looks I was getting. I kind of slunk out and that guy never spoke to me again.

I started out life as a minority. I was a white kid on the Navajo Indian Reservation. Although we moved to California by the time I started school and I became a California Surfer girl and eventually a hippie just like my peers, I don't think anyone realized the impact that my early years had on me. I don't really believe there is a place where I "belong" outside of my own home. I am at home in my skin, but I travel through a world where other people are fascinating because they are different from me.

In high school, many of my friends were Japanese. (The rest of them were in the band.) In college, my friends were multi-cultural, flamboyant, counter-culture, gay. Then I moved to Japan where I felt completely at home unless I looked in a mirror. Sometimes I would catch a glimpse of myself in a window and be shocked. Who was that white person? Oh wait. That's me!!!

We attended an "inclusive" church for many years. That means that it was a church for gays, lesbians, transexuals and bisexuals and also us. It was a great church. But eventually we drifted away because, although the pastor wanted it to be an "inclusive" church, many members of the congregation often needed it to be an exclusive community where they could "come out" in safety. Our presence made them uncomfortable. We were intrusive.

I used to go to Native American things with my friend James who would introduce me by saying, "She's cool. She's not a Wannabe." It was fascinating and I learned a lot. I loved hearing pow wow drums again. But I was not really invited unless I was with James.

Now we live in the neighborhood "Hermosa" and, except for a few Polish families who have lived here for 30 years and more, everyone else is pretty much Latino. Charley teaches in a school that is traditionally Puerto Rican and I have been teaching children to play Puerto Rican Cuatro for the last 4 years. We are trying to learn Spanish.

But we are not Puerto Ricans. We are not Native Americans, we are not gay, we are not Japanese and we are not Black. (see photo).

I spend a lot of my time at Esperanza Community Services. (see link at left) I'm a board member there. But I do not have cognitive challenges or at least not many.

I am not a Wannabe. I don't want to be anyone but myself. But I think two things.

First, it is really important for people to get together as exclusive communities from time to time. The world is a horribly unjust place and our society (like many societies) does terrible things to people who are different. Like Denzel Washington speaking as Malcom X said, it is important for people to learn to love themselves, love other people who are like them and then love the people who are different. That's not a direct quote, it's sort of what he said. I get that. I really do. As a white person, there are things I can do to help, but I can't really become anything other than who I am.

Each of us needs to spend time learning to love ourselves and coming to terms with the unique crimes, responsibilities and gifts of "my people".

Second, it is even more important for people to spend time with people who are different. If we don't appreciate the value of people who are different we are in danger of becoming intolerant and perpetuating injustice. We are all one race. I really believe that. We have different colors of eyes and hair and skin, but we are all the same. We have different opinions and ways of behaving and abilities, but we are all the same. We have different genders and orientations and likes and dislikes, but we are all the same. We need to find that out by exploring other options. We don't need to change to do that, we just need to learn to appreciate the depth that variety gives to life.

I think this is the single biggest issue we face in the world today.

And here's the good news, it can begin with something as simple as a potluck.

Wednesday, August 19, 2009

Truth or Propaganda?

I got e-mail from someone I am not sure I know. She basically sent it to everyone in her address book. It starts out something like “I’m not trying to change anyone’s mind, but I think everyone ought to read the following. It’s written by a very intelligent man who isn’t a name-caller and doesn’t use scare tactics or anything. He just lists some facts that we all ought to consider.”

Now I’m not going to tell you anything about the issue involved because that’s not the point. Suffice it to say that it was regarding an issue that is hotly debated in our society today. I’m not going to tell you whether the attachment was from a conservative or a liberal because it doesn’t matter. It wasn’t the position that bothered me as much as the irresponsible manner in which he presented his opinions and the fact that someone out there actually thought it was intelligent, well reasoned and not a scare tactic or name calling.

Okay, honestly, it was a position I happen to oppose. But I don’t like it when people I agree with use these same tactics. I just notice them more when someone with whom I disagree uses them.

First of all, it was very large, bold type. Anyone who is visually screaming is not calm or reasoned.

Secondly, there wasn’t a single fact in the whole article. It was mostly polemic and opinion dressed as fact. He said things like if we take this course of action we will be just like people in country X. “God Forbid”. Okay, I don’t actually know much about the situation in country X and what I do know is all good. So I’m not exactly sure what horror he is asking God to Forbid. I’ve got a hunch that many of his readers also don’t know. But he sounds like he knows and he says “God Forbid.” This is a scare tactic.

He then goes on to rip to shreds the spokesperson for the issue he is opposing. He uses opinion dressed as fact over and over. He says this person is the kind of person who says what you want to hear but then does the opposite. This sounds like a fact, but it isn’t. It is slander unless he backs it up with some actual fact. He doesn’t actually call the spokesperson a back-stabber. I guess that’s what my correspondent meant when she said he isn’t a name-caller. But the implication is clear. Then he goes on to advise us to watch what he does rather than what he says. This is pretty good advice and sounds like something a father would say. So it tends to give credence to the unsupported nastiness that preceded it. But that is not the same as giving facts to support these claims.

I could go on, but you get the idea. If you don’t, try reading the rules for submitting an article to Wikipedia. There is a very good example of what good, honest, factual writing should be like.

So I shot her back two e-mails I recently received on the same issue. One was a real article on the issue with real facts written by someone who has really studied the issue. The other was a thoughtful opinion written by a man who is truly concerned for the welfare of humanity. It was conciliatory and embracing and written in normal type. I didn’t really think about why I sent them. Upon reflection, I think my real agenda was to show her what facts and opinion without scare tactics and name calling look like.

But she shot back an e-mail saying that she is educated and informed and I need to look into the issue more. Well, probably she’s right. But I’m not going to allow myself to be educated and informed by nasty people, so I asked her to remove me from her address book and she did.

I don’t mean to say that she is nasty. As I said, I don’t actually know who this woman is. It sounds like she is a nice person. But we both obviously think the other person is kind of dumb and misled and we neither of us want to hear what the other has to say.

Is this the core of what is disturbing me? I’m a nice person. If two nice women can’t find a common ground for discussing things they disagree on, what hope is there for the world? Or am I just annoyed that someone who doesn’t understand the difference between fact and opinion and cannot recognize not very subtle propaganda has my e-mail address?

Friday, March 13, 2009

Jonah and the Whale

For some reason, several people have spoken to me lately about this Bill Maher movie on religion. Seems goofy to me. I mean, who cares what he thinks? He's cranky! But I did just waste half an hour trying to figure out what I actually think about Jonah and the Whale. I haven't thought about him since I was a kid! So I haven't even seen the movie and it's making me think. That's never a bad thing, is it?

So here's what I came up with:
"There's more in heaven and earth than are dreamt of in your philosophy, Horatio." Maybe it could have happened. But I don't really care! It isn't relevant. I don't think it matters whether or not there was a Jonah, let alone whether or not there was a whale!

Myth often brings us truth more profoundly than fact.

So the point of that story is not the whale. The point of the story is... well what IS the point?

More often than not, control is an illusion and safety a gift.

If God is trying to speak to you, it is better to listen than to run.

In this world, the answer to the question, "why" is usually silence.