Daniels story Part 2 the later years

lets snuggle Mom

Bed

How a depressed person thinks:

Lately things have been rough for me. In my head. In my mind. When I have money stress it pushes me down a dark tube into depression. Because I can't do regular jobs like most people. Because my disabled child may be fine today, nut not tomorrow. Because I had a job but now they can't pay me and I'm behind. A lot.  I am helping Sarah go to Italy for school. No matter what it takes. No matter what else has to suffer. She gets a class credit for going and she is a brilliant kid who deserves it.   So I will somehow make the payment.  But it's the rest of life that has made me want to retreat to my bed.

Everyday when the kids are off to school and John is off to work, I have coffee and it's lonely and dark in the house. Except for my animals. All I want to do is go back to bed. Today, I did. I would still be there if I didn't have to pick up Thomas. 

I feel like my situation is too hard for me to manage. I can't find my superwoman cape anywhere. Maybe there is crypto it's under my house. But all I want to do is sleep. I can't go shopping (no money) I should be going to probate court for Daniel, cleaning, cooking, scheduling appointments, calling equipment suppliers, exercising, looking for a job, being.happy jovial person.  There are so many "should be doing things". And John adds to my list, you can fold the towels today. Ok. I brought them up from the dryer.  But I don't feel like folding. I don't feel like eating. Actually I had an apple today and it's 2:38pm. And I am not hingry at all.  Considering I'm a fat person this is highly unusual. 

My bed has lots of pillows. And soft lights above the headboard. I can block out everybody in my bed. Henry stays with me and snuggles. I should be put walking.  Today it's raining so I guess that wouldn't have happened.

I should be praying for help or calling a doctor about my psychosis. But I'm just numb.   I'm tired of trying to do the money and th money never being there. I feel hopeless because I worked for a month and didn't get paid. The bank says I am overdrawn. I don't have a debit card.   I'll never go into the branch again. They were so rude to me last week. 

Nothing is perfect here. This life doesn't fit into the square Holes of regular normal people.  Daniels mic key button clogged this morning. I cleared it with a tooth pick. 

I can't remember the last time I had my hair colored. It looks awful. Really awful. I think it's been 3 days since I showered. I will shower later because I feel gross. I am gross.  My job told me not to come to work anymore right now. Money is tight. It's tight all over I guess.  Except for the Mom I am looking at in the parking lot of my sons school in her Giant fancy Lexus sport utility. Chatting on her phone. Her nails are amazing and she has gorgeous hair. I wonder who she is talking to becaus she looks happy.  I'm a grunge pit.  My pants have bleach stains and my sweatshirt is torn. I used to like to dress now.  Now I just wear old clothes. 

My bed. If I went back there right now I would fall asleep instantly. It's all I really feel like doing. It's pouring rain outside. 

Thomas is helping the middle school band.  Sarah texted me that she got an interview with CBS.  

There are so many things I should be doing.  Join wants me to apply for full time HR jobs. I don't see how that could work. But he's adamant that it should go back to how it was before. Back before Daniel was medically fragile and I made a lot of money. But it's different now.  The stress is greater. 

When I go out I pretend. Smile. Look happy.   I have $10. Extra bucks. I should go buy some chocolate. And go home and go back to bed. My favorite time of the day is bed time. I love my bed. And al my pillows. I feel loved and safe there.  I'm waiting in my car. For Thomas. It's raining. I just want to close my eyes and sleep. Right here. In this car.  But I would prefer my bed. 

Daniels story Part One

Respect the toad, day in the life Sunday

Henry loves the dog park

I love you Daniel

Emotional day in my life

Rehearsal and a snuggly cat

Back to campus after Fall break, the NYC drive

Furry Animal love

Daniel in Special Physical Therapy session

The worst side of the house

surprise gift in the PO Box and a grumpy hubby

surprise gift in the PO Box and a grumpy hubby

Am I wrong to think the way I do?

I am a 49 year old Mother and wife.  When I look at my kids I see some pretty amazing talent and ability.  What is life really? Too short not have a grateful heart every day.  Too short to spend days obsessing over negative things that will never do anything but harm your health.

Is it a fault that I like to see beautiful things, even in places where beauty is questionable to some.  Is it wrong to believe that karma does exist and that finding a slip of paper on the side of a country road that says JOY in hand written blue ink is NOT an accident?

Life is a tumultous road of tedious stops and starts.  Chores and maintenance, money and medical.  Things that are "the right things" or things that are "the best things" or simply not knowing what to do.

I am like a little kid under a gigantic pile of papers trying to unstick myself from the mess.  Sit down.  Get yourself together Julie.  Make a list and organize yourself.  PLAN.  How can you not have a plan.

The zig and zag of relying on other people to move you along the road of life is a precursor for high blood pressure.  How are you supposed to work and have sanity and job security when you almost without a drop of doubt will have to leave or not even come in at least twice a week.  And then there are the hospital stays...don't get me started.

The world and status quo of the financial instituations in place for individuals to live the the American dream does not apply to famlies with a child born with a severe disabilty.

Money is the one thing in my life that makes my heart beat too fast, makes me panic and worry, forces me into corners and gets me so afraid.  When the bank account gets low, I am literally terrified at the thought.   Because there is never enough of it.  And all I really want to do when I'm stuck in those dark logistical practical places, is run barefoot along a beach or stick my hands into finger paint and just go bonkers on a piece of paper.

I don't know all of the politics on TV.  I don't know what is happening with the financial markets.  I don't know the intricacies of foreign affairs.  But I do know that I know my son's medical needs like the freckle pattern on the back sides of my hands.   It is virtually impossible to engage in the sophisticated adult world when you are doing breathing treatments and changing the diapers of an 18 year old.

Just wanting to let go and experience the love that is my son, while he is here.  And yet the phone never stops ringing, and the mail is stacked with "issue" containing envelopes.

How is life supposed to be?  Sometimes I feel like I'm guilty if I talk about choosing happiness and light.  Sometimes I feel like people close to us want to help, but not get involved on a personal connectivity level.   What I need most is love and compassion.  But money is a required part of that.  or not.  I don't know.

I often feel an identity crisis.  The way I removed myself from music. The way I isolate myself from the social life I once adored.  The way I ignore the health of my own body becasue I spent tireless hours caring for my children.

As I write my eyes are closing into what feels like oncoming sleep.  I don't know what tomorrow will bring.

All I know is that when I'm tired I should sleep.

Remember when we met Carl Banks? and Shout Out to Liz

something special happened

More sickness, hanging tough

Fitting into the realm of "normal"