Posts Tagged ‘cancer’

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.

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.