My friend’s mom passed away today. Just a few months after treatment began, she is gone. She leaves behind so many who love her… wonderful children, a loving husband, and friends who loved her. Thoughts and memories of her love are remembered by those who knew her.

My heart breaks as I think about her loss. I have not stopped thinking about her since I found out her mom was sick. My dad was diagnosed with cancer last year and is battling paraneoplastic antibody syndrome due to the cancer. There is little research done on this since most people who get this horrible affliction die shortly after. He has made it over a year and is getting better. But my parents have no positive outlook on life. They bitch, moan, and complain about anything and everything. There is no positivity or encouragement with these people. For them, the glass is always half full – of shit. There was no love after my wedding. Just a “Well, that’s that.” There was never any “follow your dreams” but rather reminders to fit in and don’t make waves. Play it safe. Never any thought about happiness. Don’t follow your heart and so much “you can’t do that”. I was never taught how to give out of love and was charged for stamps if I wanted to write a friend. Generosity was something that was given to them, never to show to another person.

My heart is breaking for my friend. She was lucky enough to have someone in her life like her mother. A beam of sunshine, a lighthouse in the storm. A rock to turn to and a fountain of unconditional love. I don’t have a scientific reason as to why we are who we are or how we come to have a certain mindset. But I do know one thing… we may not grow up being taught the right way, but it is possible to become a better person by doing the exact opposite of what we are taught.

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My friend’s mom is dying. She is now resting at home with hospice.  Earlier this year, it was found that she had advanced cancer and so my friend moved her mother across the country to live with her.  My heart breaks for my friend.  From what I saw as an outsider to the family, she had a loving bond with her mother.  Her mother always supported her, was there for her emotional health, and helped her in any way if she needed it.

At this point in my life, quite a few of my friends have lost their mothers.  So many of my friends talk about the loss of their best friend, a confidant, a shoulder to cry on, their support, their everything.  My mother is still alive, but I don’t know what it is like to have a mother like those of which my friends speak.  I am not close to mine.  She causes anxiety in my life that I choose not to visit that often and have to take Xanax in order to visit her.

While I don’t mourn the loss of a mother, I mourn the loss of what I never had.

At one point, I thought I had a good relationship with my mother.  I found out I was wrong early in my childhood.  I learned that her love was only based upon conditions and if I decided to follow my own path, I would not have her love.  Encouragement was only if I chose something that coincided with her wishes, and if I dared stray I would see my mother turn into something so full of anger that rage would fill her eyes as she turned into a monster.

I needed to leave and get away from such a toxic relationship.  Things were so bad as a child that I prayed I would no longer be under her care.  That someone else would take care of me or that death would release me from this hell I was living.  Or perhaps in my moments of hope there was some mix-up and I was in the wrong family and that my real family would come and rescue me and love me for who I am, and not as someone else’s ideas of what should have been.

Those were just dreams of a young girl who was never rescued.

My heart goes out to my friend who is about to lose her beloved friend, but in the same moment I am quite jealous of her.

It is truly better to have loved and lost, than to have never loved at all.

Since Feb. 8th, I have been helping take care of my dad. It started out with a trip to the ER. I have driven my mom and dad to nearly every dr. appt. I’ve also driven my mom all over creation – back & forth to the nursing home, shopping, hairdresser  sometimes back and forth between places for paperwork, to sell their truck, the bank, the medical supply store. All the while, not asking for gas money or even getting a thank you, or acknowledging I am taking time away from my own family.

 

Over the past three+ months, I have taken time out to help but it all came to an end over an argument over a few drops of water on the floor. I was getting my dad a glass of water (in the special double handled cup I made him, mind you) and got a few drops of water on the floor.  My mom freaked out and started screaming that she ‘just mopped the floor!’ and I was making such a mess. I didn’t do anything malicious. Or purposely spilling water across the room in a frenzy. I was getting my dad, who is now a paraplegic, a cup of water. And I got some droplets of water on the floor. So, of course, now I am a horrible person who is creating more messes than they are helping.  I was shocked. Astounded, really. And offended. Here I was offering help. I’m the only person showing up (who’s not getting paid) to help them. Every day. Every. Freaking. Day.

 

I have to be done. I can’t do this anymore. I feel put upon, used, and mistreated. I don’t deserve to have my feelings hurt and I should not be treated like that. It took me an hour to drive to and from their house to help out, countless hours doing PT exercises, using a Hoyer to move him from wheelchair to recliner or bed, errands, appointments, yardwork.  If a few drops of water are a reason to yell at me and make me feel like I am more of a bother, then for my own sanity, I am finished.

Another death of an autistic child and suicide of the parent.  The mother and her nine-year-old son were found in the living room of their west-side apartment on Tuesday morning.

John August played the young boy’s baseball team this past summer in the Miracle League (http://www.greenbaymiracleleague.com).  It’s a wonderful organization that helps kids with physical and neuro disabilities play baseball, which is something these kids would never, ever be able to do otherwise.

Heartbreaking and sad, when are people going to realize that raising an autistic child can be overwhelming for even the strongest?  Parenting a child is hard enough, but when you are raising a child with neuro-disabilities, the game has changed.  Everything you know and experience as a **human** doesn’t apply to these kids.  Everything from communication and basic tasks like eating are different.  How we think, act, and exist is completely different than those who have autism.

The media and service organizations keep saying there are ‘resources’ available.  Everyone is so quick to jump out and throw around ideas like “therapy” and “talk to someone”.  This is not what we need.  There aren’t resources available that we actually need and I know this because I have searched them out.  We need help.  Actual.  Physical.  Help.  Like “get your butt out of your house, get over here, and help me out” kind of help.  The “watch my kid for a while so I can go to the bathroom and not come out to my child in danger” kind of help.  Give us the physical tools that will help us care for our children, because “talking things over” isn’t going to get our kids to talk or understand that they can’t breathe underwater.

The trouble is that there is no break, no off switch, no down time.  We are always on, always struggling to keep up, always trying, always caring for our kids, always, always, always.  And without help, some days it just gets to be too much.  For those who like to misread and read into what I write: I am not excusing murder/suicide nor am I suicidal or plan on harming my kids. What I am saying, however, is if you don’t live it, you don’t get to judge it.  Instead of shaking your head at someone, give of yourself and help.

Dorothy Spourdalakis murdered her son, Alex, a 14 year old with autism who was non-verbal and unable to communicate. He also suffered from a painful bowel disease and violent tendencies.  In June 2013, his mother and caregiver murdered Alex.  This isn’t an isolated event.  Kelli Stapleton’s mother tried to poison her daughter, Isabelle, two weeks ago.  Jaelen Edge, an autistic 13 year old, and his nine year old sister were poisoned by their mother two days ago. Saiqa Akhter, 30, also murdered her autistic children, ages two and five.

 

I keep hearing “murder is never an option”.

If you don’t live with the severely autistic, you don’t understand what it is, and you certainly don’t get to judge moms like Dorothy Spourdalakis or Kelli Stapleton.  It is easy to say that murder is never an option.  There are lots of things that are cut and dry when you look at them in a sterile setting but the game changes when you are put in that situation and you have to live it and experience it with every fiber of your being.  It also changes when you are the primary caregiver.  The one who they depend on for everything.  Food.  Water.  Cleanliness.  Health.  Safety.

There is no help and no support for those of us raising kids with autism, especially those kids who can’t speak or communicate.  This means we have no idea what is wrong, what is needed or what we can do for our child.  I go through my days guessing, and usually I’m guessing wrong.

There are fights to get treatment.  Appeal processes to get services.  Fights over what the child needs.  Perceptions to overcome.  Stereotypes to combat.

There is also exhaustion.  Depression.  Worthlessness.  Fear.  Anxiety.  Desperation.

For those of you who don’t believe this is as difficult as I say it is, I’d offer for you to come to my house and be the caregiver for a while.  But that really wouldn’t do any good because, you see, you get to leave and live your life again.  One where this isn’t weighing on your mind every single second of every single day.  There would be an end for you and that, perhaps would be where you would get your strength to go on and fight through the rough times at my house.  You wouldn’t just have to walk in my shoes… you’d have to walk with my feet.  For those of us dealing with this every day, there is no end in sight.  This is our existence and we do it because we love our children and we do what we think is best for them at any given time.

I don’t get to judge the soldier who has to kill children in war and tell him that he shouldn’t do that because murder is wrong.  You also don’t have the right to judge a mother trying to do anything she can for her child, and then, as a last resort, takes him out of his pain.  I have never been put in that situation and I am not going to cast my judgment on someone who has been brought to that point.

Before comments are made and opinions expressed, go find a family in your area that is dealing with a severely autistic child who is non-verbal.  One who doesn’t communicate.  Doesn’t even acknowledge you exist.  Perhaps one who has violent tendencies.  One who has a long-term, painful medical condition.  Help them.  Support them.  Lobby the government to help those of us who are dealing with this every day.  One out of 88 kids is diagnosed with some level of autism spectrum disorder, and that figure is on the rise.  Some of these kids are severely autistic and will need care for the rest of their life.  If something isn’t done to assist the families, we will, without a doubt, face an epidemic such as the case of Alex and so many others.

We aren’t asking for a pity pass.  We are only asking for help.  If our kids would have been born with cerebral palsy, Down syndrome, cancer, schizophrenia, ADHD or a traumatic brain injury our private insurance would provide more and we would get more state services to help us care for our children.  I am in constant contact with my son’s case worker, asking for help in whatever services there may be available for him.  Do you know what he’s eligible for?  Nothing.  There is nothing available to him until he comes off a waiting list.  A waiting list that took a year to get onto and that will take years to get off of.

In the meantime, I too, will wait for help.

9 11

My son’s 6th grade social studies teacher asked the parents to write what they remembered about September 11, 2001.  The kids in his class were probably not born yet. Below is what we experienced.

On Sept. 11, 2001 I was in a my Coca-Cola delivery truck, driving down highway 41 on my way to the Express gas station off of College Ave. in Appleton, when I heard the news of the planes crashing into the World Trade Center Towers come over the radio. When I got to the gas station to make my delivery, I immediately called my wife and told her to turn on the TV because something was happening in New York. By the end of the day I knew the world had changed forever. Most Americans had no idea what it looked like to have a war on our soil and where shocked and horrified by what they saw. I have spent time in war so when I saw it I was more disturbed that something like this had come to MY country. We, as a nation, could have reacted in many different ways. It seems to me that we chose fear and suspicion instead of unity and bravery. The most disturbing evidence I saw of this is when I saw an interview on one of the major networks, with a woman. She was asked how she felt how about the increased security at the airports she said, “I am ok with giving up some freedom so I can feel safe.” I think this goes against what our country should stand for.

I miss the way things used to be, when everyone wasn’t so suspicious of what everyone else was doing. I miss being able to fly and not wait in long security lines because of fear of what might happen.

———————————————————————–

I was at home when my husband called me and told me to turn on the TV.  I couldn’t believe what I was watching.  It was as though I was watching a movie because it didn’t seem real.  The towers were such an iconic part of New York and were used so much in photos, movies, and TV shows in New York, to see one of the towers burning was surreal.

I watched the news for a while.  This was early on in the day’s events and they were still piecing together was had just happened.  Was this an accident?  Did someone do this on purpose?  How could something like this happen?

And then the second tower was hit.  Did I see that right?  I did… I just watched the South tower get hit by a plane.  You knew this was no accident.  I couldn’t turn away from the TV.  As I was watching the news coverage, the tower I had just watched a plane crash into started to collapse.  It fell like it was made out of paper.  The dust was everywhere.  All you could see were clouds of dust billowing up from the ground covering everything it could touch and enveloping it in a thick layer of gray that was once a skyscraper.  Everything it touched looked like it had been turned into stone.  Then the North tower fell, and more dust swallowed Manhattan.

As this was happening, I knew it was one of those events I would look back at and would always remember where I was when it happened.  Events like these are sprinkled throughout history. Two that come to mind are the Space Shuttle Challenger exploding, which happened a month before I turned eleven, and the assassination of President Kennedy when my parents were in high school.

I watched as hundreds of people died on September 11, 2001.  People, who when they woke up that morning thought it was going to be just another Tuesday.  You can’t forget something like this.  The images of the day’s events, the strained faces of the people trying to figure out what just happened, the hopeless looks on the emergency workers’ faces, and the image of hundreds of people walking over the bridge trying to get home will stay with me forever.

From the Green Bay Press-Gazette: Lost dog claimed by others; deaf woman wants it back

Written by Alexandria Valdez, Press-Gazette Media, May 27, 2013

It was a snowy day in early March when Susan Heezen noticed that her 5-year-old dog Bear was missing.

Heezen, who is deaf and communicates with sign language, just figured the dog wandered off with another farm dog in their small community near Denmark. But two days later, Bear was still missing.

Heezen became worried because Bear was not just a family pet, he helped her in her daily life. Although Bear was not a trained service dog, he had learned some basic sign language and could follow some commands.

Heezen found out weeks later the black lab and German Shepard Pointer mix dog ended up at the Lakeshore Humane Society in Manitowoc, 23 miles away, and had been adopted by another family.

The shelter said it has a mandatory eight-day period in which it holds animals before they can be put up for adoption. In Bear’s case, eight days had passed since it received him on March 2 and the shelter said it didn’t hear about any lost dog and did not receive an inquiry from anyone about him.

A week after Bear went missing on March 2, Heezen said she contacted the Brown County Sheriff’s Department to file a report and then — in May — posted a lost dog ad on a website.

“All she wants is to plead to the general public, ‘This is my situation and I need my dog back,’” said Kathy Nichols, a volunteer for lostdogsofwisconsin.com. “She did ask Lakeshore to contact the adopted family and they said they did and the family said no.”

Heezen said Bear helped her and her husband in everyday life. He would alert them when people came over and was a constant companion with her when she worked on her in-laws dairy farm. Now, things are different without Bear.

“I feel scared without him because I live out in the country and I always depended on him for protection,” Heezen said through an interpreter. “So I’m nervous without him.”

Due to privacy laws, Heezen does not know the family who adopted Bear or where he lives now.

The dog was missing one critical thing when it came into Lakeshore that might have helped identify Heezen as the owner.

“Unfortunately, the most important item to identify his owners was missing; a rabies or ID tag, or a microchip,” the humane society said in a statement. “LHS staff scans every animal on intake to see if a microchip had been implanted. If a microchip is present, the dog’s owner might have been identified immediately.”

Heezen, however, said she is still going to fight to get him back.

“I’m not giving up,” Heezen said. “He’s still alive and I know that he’s always going to be in my life. While he’s alive I will be thinking about him and hope that I get him back.”

 

I have worked in animal shelters and that world does not paint a pretty picture.  There are happy endings and heartwarming stories, but there is a dark side that the public does not get to see.  This story brings about up questions for me and it upsets me more that I would have imagined.  It’s hard not looking at this story through my mind’s filter of having worked at animal shelters.  I have met loving owners, overzealous owners, and owners who love their pets more than life itself. And I have met dirty, rotten, scum-of-the-earth owners.  The kind that are so horrible that you begin to wonder why God has allowed them to live, only to harm another living being.  And I got to see the result of their actions.

From my point of view, if this dog was so vital to her, why did she not miss him immediately and search every possible place?  If it were me, I would not have waited days to see if he came home, a week to file a police report or two months in the case of the online ad.  I would have done it immediately and with all neighboring communities since Denmark is in the middle of nowhere. She should have looked in all directions, and immediately. Denmark is between Green Bay, Manitowoc, Kewaunee, and Appleton and is less than three miles from the corner of Brown, Kewaunee, and Manitowoc Counties.  When you live in an area that so closely borders two other counties, you have to take all necessary steps to report your missing pets to all the local shelters, no matter how far-fetched it may seem that they end up there.

lost dog county view

If you live near other counties, in this case it was less than five miles, you must look at all shelters in all counties.

lost dog state view

Check with all major cities near you.

It really isn’t a good idea to let your pet off leash.  I can’t help but wonder why he was even off leash?  Was there a collar and legible tags? If the habit was to let him run free, why wasn’t he mircrochipped?  If the dog does go back to her, I certainly hope she doesn’t let it off leash or outside alone again, especially if the dog is vital to her. She probably should have had it mircrochipped even if she was in the habit of making him wear a collar, lets him run free or just wants to be on the safe side.

Many shelters have online missing pet forms you can fill out, with photo, without even going to the shelter. Get in contact will all animal rescue agencies within 50 or 100 miles of the last known location.  Check back frequently.  Get the word out via flyers, neighbors, Facebook, Craigslist, newspapers, lostdogsofwisconsin.org, and other such organizations.

People are getting mad at the shelter. How long should the shelter have held this animal? The shelter did what they are supposed to do: find a home for an abandoned dog.  The original owner has to be willing to accept that she was partially responsible.  What would she be claiming if they would have had no more room and euthanized the dog?  Many shelters cannot keep all the animals that come in through their doors.  That is a cold, hard fact.  The job of picking out which ones are “most adoptable” is a gut-wrenching decision, one that all shelter workers wish they didn’t have to make.  We have to remember that shelters run on little money.  Funds are needed for food, medical, cleaning supplies, water, heat, and electricity.  Many of the “workers” are volunteers and can only do so much and the position of Pet Reuniter just isn’t feasible.  Shelters are not running a boarding facility and can’t hold stray animals for an indefinite period of time.  The goal of any shelter is to be empty.  The shelter did its job.  Additionally, if the new owners are forced to give back the adopted animal, how many people would be willing to adopt from a shelter if they might be forced to give it back?

For many, as soon as you meet an animal at the shelter and fill out your adoption application, you become emotionally invested.  It is not unlikely this is what happened to the new family.  We can’t blame them for wanting to keep their new pet.  For all we know, the adopted family wants to return the dog to the original home, but would like to make arrangements to be compensated for any adoption fees, veterinary expenses, etc.

I don’t think the original owner of the dog is a bad person, nor are the new owners vindictive people, but there are lessons to be learned here.  Go over the safety of your pet.  Do you have proper identification on him?  How about up-to-date photographs?  Are his vaccines current and are the vet records where you can get to them quickly?  Do you know which animal rescue groups you would call in case the worst happened?

Ultimately, we are the ones responsible for the pets we keep.  We need to be proactive in our searching and thorough when looking for our loved ones.  It is up to us to leave no rock unturned.

Since this event is happening in the area, I think it’s worth mentioning.

Pet microchip event offers discount, May 24, 2013

To help alleviate stress in finding lost pets, Bay Area Humane Society, 1830 Radisson St., is offering low-cost microchipping from 5 to 7 p.m. Wednesday and 9 a.m. to 1 p.m. June 15. Cost is $20.

A pet that has been microchipped can be scanned by animal control, animal shelters and most veterinary clinics to help link it to its owner through national databases. BAHS also recommends all dogs and cats have tags on their collars as a back-up.

Suddenly it all becomes clear

Posted: February 25, 2013 in Unfortunate Events
Tags: ,

A Toxic Brew

Adult children of alcoholics face down denial, but it’s a trauma they carry throughout their lives.

Janet Geringer Woititz, widely acknowledged as the founder of the Adult Children of Alcoholics movement, lists 13 traits to look for.

These individuals:  (Thirteen characteristics of adult children of alcoholics)

  1. Can only guess what normal behavior is
  2. Have difficulty following a project from beginning to end
  3. Lie when it would be just as easy to tell the truth
  4. Judge themselves without mercy
  5. Have difficulty having fun
  6. Take themselves very seriously
  7. Have difficulty with intimate relationships
  8. Overreact to changes over which they have no control
  9. Constantly seek approval and affirmation
  10. Usually feel that they are different from other people
  11. Are either super responsible or super irresponsible—there’s no middle ground
  12. Are extremely loyal, even in the face of evidence that the loyalty is undeserved
  13. Are impulsive. They tend to lock themselves into a course of action without giving serious consideration to alternative behaviors or possible consequences. This impulsively leads to confusion, self-loathing and loss of control over their environment. In addition, they spend an excessive amount of energy cleaning up the mess.

 

Also worth reading…

Adult Children of Alcoholics (ACOA): The 13 Characteristics

http://allone.com/12/aca/

https://twitter.com/Buddy_T

http://stepchat.com/acoa.htm

http://www.12stepforums.net/acoa.html

Illustration Friday – Tall

Posted: August 30, 2012 in Crafting

image

Sometimes I feel so small.

But not so much today

Posted: March 7, 2012 in Uncategorized