Tweet

So now I'm on Twitter.  What a fascinating way to waste time!  I haven't really learned much about Ben, but I do know that Wil Wheaton passed his driver's test 100% and that a lot of people don't want Neil Gaiman to shave his beard.  His photo is clean shaven, so how do they even know he HAS a beard?  He points out that his beard is like Schrodeger's Cat - which I think is a good point.  


Chicago Tonight wanted us to text in our opinion on whether Rod Blago is guilty or not - and people did.  I don't suppose the judge or jury were listening.  Technology gives us such brilliant opportunities to display our ignorance.  The irony of saying this in a blog is not lost on me.


Then they interviewed a woman journalist who has written a  book about her experience caring for her elderly mother.  But, since she is a journalist, she seems to think she can extrapolate from her experience to that of every person caring for an elderly parent.  She made some pretty broad statements about how unfair it is that "society" still splits duties along gender lines - lawyer stuff to her brother, buying diapers to her - and that this is the case in most situations.  How does she know that?  You'd think a reporter would get some, you know, hard data before making generalizations like that.  But no.  She's just going on her own experience.  Which makes her book a memoir, which is fine, but it isn't news.


I'm crabby.  

Can someone PLEASE explain?

Here's what I keep hearing on the radio (and reading in Time magazine!)

1% of the people hold 90% of the wealth.  Why should I support tax cuts for them?

 Our primary and secondary schools keep lagging further and further behind the rest of the world.  Why are we cutting back on education?

5% of the world population lives in this country and we consume 75% of the medicine and we pay much, much more for health care.  Okay, so why are we only 37th as far as quality of healthcare?  And why is the GOP intent of repealing health care reform?

The Social Security program has been paying its way and has enough surplus to continue doing so for at least 27 more years.  Why does it get mentioned every time someone is talking about the deficit?

It seems to me that the gap between the wealthy and the poor is getting larger and the real struggle is not between the political parties - liberal vs conservative - it is (or should  be) a struggle between whether we want to live in a democracy or return to the dark ages!  Not only the money, but the power is all getting pooled into the hands of the very wealthy and the rest of us are carefully controlled so that we keep on arguing amongst ourselves while everything is taken away from us.  We should not be arguing about the rights of minorities or immigrants or GLTBs.  We should embrace equality and work together to make sure we don't become scapegoats and serfs!

Control Issues

I just don't get it.  I did everything right.  All I wanted to do was go to church and sing in the choir.  So yesterday I spent the whole day focused on doing everything possible to make sure Sam got a good night's sleep.  I changed the clocks forward first thing in the morning hoping to "psych" us all into the time change.  I fed him regularly.  I made sure to pay attention to him so he didn't feel ignored.  I did his 45 minute treatments three times and I made sure his medications were correctly balanced.  I even changed the furnace filter because it was looking a little gray on the theory that clean air helps him breathe better.  (It's just a theory.  The allergist says he's not allergic to anything.  His breathing problems are because of the way his head is shaped and because of the way his brain works.)

I bragged to a friend that I had finally reached acceptance of the fact that my number one priority is managing Sam's lungs.  If I do the treatments correctly and get him to the chiropractor twice a month, he is fine.  Even the apnea is reduced.  If I let the schedule get out of sync, he is miserable.  And so am I.  It's a very plain fact.  My life is ruled by this routine.

How nice.  How safe and predictable.  I am secure and in control of my life.  Keep it simple and keep it sane.  That's my motto.  Stress and failure occur when I rebel, peace and success are the result of faithfulness.

Wrong.

In spite of doing everything right, Sam and I were up until 3 am.  He was groaning in sinus pain and trying to be brave.  I was tender and sympathetic and trying not to hit him over the head or give him whiskey.  I WANT TO SING IN THE CHOIR!!!  Can't he get that?

 How deeply spiritual I am not in the middle of the night.  On Friday I did the Stations of the Cross and Taize and then Luis gave a very lovely bi-lingual talk.  I sang.  I read really good scripture verses.  I got to see so many of the people I love.  Rosie and I actually talked about how important it is for choir members to worship as they sing.  It makes a big difference if we worship instead of perform.  I don't do either.  I just love to sing with other people.  Well, maybe that's worship on a very primitive level.  I only get to do this twice a month on a good month.  I miss those two Sundays often because of Sam.  

Two weeks ago I gave a talk at another church.  One of the major themes of my talk was we are not in control.  Why do bad things happen to good people?  Because bad things happen to all of us.  God does not cause them to happen.  They are not part of God's divine plan.  The Bible is full of stories about bad things happening for no reason or because of an enemy.  Whether the enemy is a person or an event or Satan, bad things happen and people in the Bible turn to God and ask for help.  Joseph says to his brothers, "You meant it for evil, but God meant it for good."  Paul says to the Romans, "All things work together for good."  In other words, God answers prayer and comes to us in our distress and redeems the situation.  Sometimes.  God redeems us always.  Eventually.

Last week I got to go to SPRED church.  We all three made it and Charley played with that choir.  It is a wonderful sound.  I do worship when I go to SPRED church and especially when I hear Charley playing lovely music.  The message from Fr. Jim was something like "Jesus says to you today where you are standing right now is holy ground.  Let the fire of my divine presence grow within you.  Nurture it."  I'm home this morning.  Where I stand is holy ground. I have a Bible and some really good tea and Sam's asleep.  I can go upstairs and turn on some music and nurture the divine in me.  That is always a possibility.  

I spend soooo much time alone I'm becoming a Desert Mother and not by choice. 

I have often said that I don't have any choice or control over the bad things that come to me.  BUT I do have a choice about how I will respond to them.  That's the part where God comes in.  God is apparently not going to intervene and make Sam healthy.  But God can help me appreciate my time with him and love my life and manage the difficulties, if I ask.  Although I wouldn't say no to a healing...

But in spite of all my wisdom and 28 years of learning the same lesson over and over and over again, this morning I'm just grumpy.  I didn't get enough sleep last night, I was scared and unsure what to do for most of it and this morning I don't get to sing with the choir.  Life's not fair.

Do you know that the divorce rate among families who have a child with disabilities is somewhere around 98%?  The fact that I make it to church at all is due to the fact that we remain a two parent household after all these years.  There's a miracle.  Charley is playing his saxophone this morning in our old church.  I hope he gets a lot of love and gratitude.  I hope he comes home feeling good and refreshed and ready for another week at work.

I hope I get to go to church next week.  AND SING!

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?

Resolution

Just for the record, it WAS "Heather's" fault.

I got a phone call tonight from a fellow crafter who has all my stuff. She said that she has disabilities. (I remember her, she did a very nifty u-turn in front of our booth) Her daughter in law picked up her stuff for her. While the DIL was loading up the boxes clearly marked with the crafter's name, a young girl came up and said, "The lady told me to put these in your van." And "Heather" loaded my box and my friend's plastic bag in the car. Regardless of what "Heather's" mom shouted at me, no one ever told Heather to do anything other than stand there with the stuff.

The DIL called the crafter incensed because she realized that they belonged to someone else, and thought her mother in law had "volunteered" her for an extra delivery. The crafter actually put the box and bag BACK into her own car and drove BACK to the church to see if anyone knew whose stuff it was. Someone was there turning out the lights and said the fair was all over. BUT it MUST have been that janitor guy who knew we were right there in the parking lot waiting in the rain for AAA.

Not only that, but no one has called this crafter to ask if she had an extra box - so the organizers broke faith with me there as well.

So this evening, the crafter looked through my stuff and found my phone number and I'm going out to meet her tomorrow evening to get my stuff back. Hallelujah

But I am still very upset about the lack of concern I met from the organizers. I think they have a certain amount of responsibility for making crafters feel safe. Needless to say, I'm not going back there again.

My trust level has gone down a notch. I now know that it is highly likely that I will be separated from my stuff during set up and pull down at these fairs. I will have better signage on my boxes and I will have my own "volunteers" watch my stuff. NO more trusting organizers who offer their volunteers. As someone said in Mass today, they made a bundle. Every crafter paid for their booth. They don't care if you sell anything or not. They don't care if you loose your shirt as long as they get their booth fee. That certainly seems to be true in this case.

Addendum

I left out the part about only selling one necklace for $5 the whole day

and being so upset that I locked my keys in my car

and the two police cars who came to my aide only left without being able to help me because 1-they don't open cars anymore and 2-we aren't sure an actual crime was committed, maybe it was just a mistake, so come back to this far west suburb in a day or two to file a police report.

and that it got dark and cold and started to rain before AAA came out to open the car.

and that everyone at that Church School now hates me

And that I only have one headlight and had to drive home in the dark

and finally gave up hysterical and parked in a McDonald's lot and Sam and Charley came to rescue me

so I have to go back to the McDonald's today to get my car before it gets dark again.