Monday, August 09, 2010

Happy Birthday

It is 364 days until I'm 60 years old.  Sam turns 30 in 18 months.  He's been my lodestone for half my life now.  That's a welcome surprise.  I spend so much time trying to keep him alive and fearing he will die that I don't stop to realize that we're doing pretty good!  We've been together for roughly half my life.  I met Charley when I was 15, so I've been with HIM for roughly 75% of my life.  Talk about "significant others"!  It's a very settling thought.  This is it.  These are the men in my life.  We three are a unit.  Home is where they are.


Other than that, I can't think of anything good about my 59th birthday or the fact that 60 comes directly after 59.  I"m feeling kind of depressed.  I've been obsessed about it for a couple of weeks.  I keep telling people that I'm almost 60 and their reactions are reassuring.  They are always shocked.  "I had no idea you were so old!"  That's nice, because I didn't have any idea either!


I've never really bothered with milestones, but for some reason turning 60 is becoming an "issue".  I don't think I'm ready to be old.   I'm suddenly in a hurry.  There's not a lot of time left.


I think it's time to get serious about a few things.  For example: diet and exercise.  I have an amazing body.  No matter how much I abuse it with worry and overeating and a sedentary lifestyle, it has always stayed pretty strong and healthy.  Lately I've noticed some pretty permanent aches and pains and I have gained far too much weight since I got married.  Goal one: get serious about taking care of myself.


Goal two is move to Portland.  I have learned to appreciate Chicago.  I've lived here for more than half my life.  But I'm not sure how that happened any more than I know how I got to be 59.   I still think of myself as a west coaster.  I'd probably be happy to live the rest of my life here except for two things: Portland is better for Sam and Portland is where Ben is.  


Goal three is to remain a significant part of the lives of my grandchildren.  This year we've had two quick visits from my daughter in law and youngest granddaughter and one very long visit from the two older grandchildren.  (And a brief glimpse of Ben).  It's not enough.  We bond very nicely when they are here, but long distance relationships are hard to maintain and children are so busy with what is right in front of them.  Yesterday Tahreq and I performed a song he'd written in front of church.  I was so proud of him!  I want more first hand experiences with them.


In spite of the fact that I've been mentioning my impending birthday for weeks now, it doesn't look like anyone is going to remember that today is the day.  In fact, when we talk about what we are doing today, I keep reminding Charley that I have to get my driver's license renewed today, but he doesn't seem to make the connection.  I wonder what I'm going to do.  I don't particularly want to host my own birthday celebration.  I definitely don't want to cook dinner and make my own cake.  I think I'll just remind them that it's my birthday and insist that we go out to dinner.  I don't really want a fuss, at least not this year.  NEXT year, however...

Saturday, May 29, 2010

Robins

We have been honored to host a couple of industrious robins this spring.  I'm pretty sure it is only two.  They built a very messy nest over our back door and an incredibly perfect nest in the window box on the front porch.  The window is in Sam's bedroom closet, so we had a great view from in the house that didn't bother the robins too much.  They laid 4 eggs in the front nest first and three of them hatched.  It was just amazing to see them grow.  It seemed like they doubled in size just about every day.  

Our entire neighborhood was awestruck.  I could see them shushing their dogs as they walked by.  Several people told me that this was a sign of good luck - and they didn't even know about the nest over the back door!  The robins were pretty friendly while nesting, even letting me snap some photos.  I'm sorry to say, the pictures didn't come out.  But once the eggs hatched, they suddenly were not so friendly and began dive bombing anyone who came up the front steps.  (By a strange coincedence, "The Birds" was on tv that week.)  I began to think we could cancel our alarm system since we now have attack robins.  But Charley met one of them on the front steps and had a long conversation with it.  We assume it was the father bird since he seemed to have a Marine buzz cut hairdo.  After the man-to-man talk, they stopped attacking.  

Then one day the nestlings were so big I couldn't figure out how they all stayed squeezed into the nest.  The next day they were all gone.

Two days later, I noticed that the messy nest was occupied.  I discovered that I had a great view of this nest from my kitchen window.  Still no good photos.  Sam and I go out that door and I was a little concerned about the attack robin phase of robin rearing, but they didn't bother us.  They seemed to enjoy watching me with Sam. They would follow us as we walked from house to garage, chirping encouragement!  A horse breeder told me once that her animals seem to have an awareness that children with disabilities need extra gentleness.  I wondered if the robins knew that this was my fledgling.  Yesterday they all flew away from that nest.

This morning we noticed one fledgling on the ground in the back yard.  It seems to have "developmental disabilities".  The thing that amazed me was how hard both parents were trying to bring the fledgling along.  They just were not going to give up.  They were fierce about trying everything they could think of to help this last one get off the ground.  I was inspired by their determination.

I don't know what will happen.  Our back yard is a pretty safe place with plenty of stuff for a bird to eat while it takes extra time to learn to fly.  It looks like the parents know what they are doing.  

I have always heard that animals kill the "runt" of the litter.  It always bothered me.  This doesn't seem to be true for robins.  I'm rooting for them.  They aren't cold and uncaring.  They don't believe in survival of the fittest.  They are passionately trying to save this little one.  If they succeed in giving their runt that little extra boost, I'm sure they will be proud of themselves for years to come.  If the baby dies, at least they will know they gave it all they could and they did their best.  And the memory of the extra time they spent will be sacred.

I can relate.

Thursday, May 27, 2010

Exceptional Parents

There is a great magazine (or anyway was) called Exceptional Parent for the parents of children with developmental disabilities.  I haven't seen it in awhile, I guess because Sam isn't really a child anymore.  But the idea has stuck with me.  Exceptional children require exceptional parents.  Sometimes I have risen to that challenge and sometimes I have not.  It has troubled me lately that I am on the "not" side of the equation.  We are coming up on 60 and retirement and I am TIRED!  But Sam's needs keep growing, even though he doesn't.  When Charley retires from teaching we will still need income and we are actively thinking about what we might do.  I keep asking myself who I am and what am I good at.  The answer is always that I am Sam's mom and I am good at being Sam's mom and also a lot of craft stuff.


So fine.  My career, so to speak, has effectively been being Sam's mom.  I should think of it as my career.  


At one time I was a pretty great Executive Assistant to several guys.  Now my title is Personal Assistant to Sam.  (for which the State of Illinois pays me significantly less than the other guys I was Executive or Personal Assistant to... including the church job!)


Nevertheless.  I have been keeping a log of my day and started to explore time management for caregivers.  I've taken a lot of time management classes in my life as an Executive Assistant.  They often bugged me because they advocated delegation as a great method of time management.  When you are the "delegatee" that doesn't help much.  Now that I am a stay at home Executive, there has to be a different sort of time management that will work for me.  


So I am taking all the stuff I learned and all the realities of my crazy life and trying to come up with a new system.  I call it the "worry book".  I just keep a spiral notebook and write down all the things I am worried about not getting done.  Housework, bills, Sam Care, phone calls, sweaters for the grandkids, grocery shopping.  Then on the next page I put tomorrow's date and start thinking about what is most important to get done tomorrow.  I have discovered that I think best in the late afternoon or just after dinner.  Doing this in the groggy morning when I have to get Charley and (Hopefully Sam) out the door is just not effective.


I have three columns.  Time, Task and Actual.  I write down the time I hope to get things done and the things I hope to do them.  Then on the next day, I keep track of how the day goes and what time (if ever) I actually accomplish my tasks.


In this way, I'm getting a written record of how my day goes and hopefully I will be able to see some ways of becoming more effective at doing my job.


Comments?

Tuesday, May 04, 2010

Exciting day

Sam and I went to Starbucks today to see are good friend Eileen.  Eileen worked very hard for many hours trying to get Sam to say her name, and he used to say it.  But he hasn't said anything in years apart from the occasional "Sushi" request!

Later this evening we went to CVS to pick up some meds.  Eileen is the manager of a CVS store.  Just outside the CVS, Sam stopped and said, "Eileen"!!!!  Inside I was showing him a toy I thought he'd love, but he didn't seem too interested.  I said, "Sam don't you want this?" and he said, "No."  When we got home I was a bit encumbered with some packages and, of course, Sam.  I stood at the back stairs and wondered outloud, "How are we going to manage this."  Sam said, "Up."

Of course the really sad part is that he has these moments every now and then.  And then they are gone again the next day.  But it was really great while it lasted. 

It confirms in my mind that he really does know what's going on outside his head, he just doesn't remember how to talk very often.  One doctor told me that is very common among stroke victims.  His theory was that Sam suffered a stroke just a few weeks before birth.  Certainly, Sam has many things in common with people who have had a stroke in the same part of the brain that Sam has damage and treating Sam as though he was a stroke victim has been a very good plan.  It's probably the best theory we have about what is wrong with Sam.  This inability to speak even though he understands what is said to him is called aphasia.  He doesn't understand everything, but he understands a lot.  I never know how much, but it seems safest to assume he understands just about everything. 

I wish we knew.  I wish a lot of stuff. 

I went to the Esperanza Community Services Annual Banquet last night.  It was great, as usual.  Amazing food, great art, saw a lot of people I really love and laughed a lot.  Bought a quilt made by my friend Margaret.  That's a real treasure! 

But there is a real problem with going out in public.  People say stuff and I don't know the correct response.  For example, several people last night said that old line "I don't know how you do it.  You are amazing."  I don't know what I'm supposed to say to comments like that.  I have tried many responses and rejected even more.  Like I have never actually said, "Well, my parents are from the Planet Krypton."  Last night, I came up with a new response.  I said, "Well, he's just so darn cute.  It really makes things easy."  I haven't slept in two nights, but he's so cute that I don't mind... much...  Well I do mind.  A lot.  But I don't know what else to do.  Oh! Oh! There's a good response: "I'm just too stupified with exhaustion to think of an alternative to doing what I do."

Another response I've been thinking of using is to tell that story of the frog in the boiling pot.  You know the one: If you put a frog in a pot of boiling water he jumps right out again.  If you put him in a pot of cold water and gradually turn up the heat, he'll just swim around until he's cooked. 

If someone hands you a kid with profound and multiple disabilities and tells you the whole litany of problems all in one go, you run for the hills.  On the other hand, if someone gives you a beautiful baby boy who just has trouble swallowing, you learn to cope.  Then they say, "well he seems to have one or two other problems."  And you notice a few more as the weeks and months go by.  Each time you say, "Well, that's just one more little thing." After awhile the doctor can say, "well, he seems to have spinal meningitis and he's probably going to die in the next few hours.  Oh no.  Our mistake, it's just an ear infection."  That's a great strategy because you hardly notice the next 42 little new things wrong because you're so happy he made it through the spinal meningitis thing.  After that, they keep on adding stuff gradually for 28 years!  So when someone comes up to you and says, "Wow!  You're swimming around in boiling water and you look just fine."  You say, "Well, he just so darn cute."

I don't believe that story about the frog.  Who would do such a thing to a poor frog anyway?  Or why?  Maybe I should go with the one about my parents being from Krypton.

Sunday, March 14, 2010

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!

Sunday, February 28, 2010

Macbeth Poem

Hi to all my new friends at the St. Mark Lutheran Church in Worth, Il!!!

Here's the poem, as requested.  I wrote it when Sam was about 2 1/2 years old.

Child Victor

Born: Like Caesar
Natural child
Torn in unnatural manner
From natural mother
Into cold, unnatural sterility.

Purple with rage,
You tore needles from your flesh
Until they pinned you down.
In that world of hoses down throats and bright lights
And rock music
YOU
Were a giant.

"He will never see,
Never walk, never talk,
He fails to thrive.
Profoundly retarded, profoundly disabled
And probably
A Dwarf."

You laugh.
And seeing me at the far end of the hall,
Cry, "Mama!"
As you slowly inch your way down your own
Olympic course,
And finally,
Reach your goal.

I lift you up.
With four gold medals glowing in our four eyes
We two alone, are buffeted
By crowds of angels
Cheering.

"He will never..."
That lies like truth.
Never: 'Till Burnham Wood do come to Dunsinane

In two short years,
I have seen you do what no Doctor
Born of woman
Believed you could do.

So lead on MacDuff and Damned be he who first cries
"Hold enough!"

By Jeanne Forsberg with help from Shakespeare.

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???