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?