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.
Tuesday, September 22, 2015
Thursday, September 17, 2015
Sunday, September 13, 2015
Saturday, September 12, 2015
Friday, September 11, 2015
Monday, September 7, 2015
Friday, September 4, 2015
Wednesday, August 26, 2015
Sunday, August 23, 2015
Thursday, August 20, 2015
Wednesday, August 12, 2015
Saturday, August 1, 2015
Isolation
Isolation
People exist around you. Things are happening all of the time. But why do you feel alone?
In groups you pull yourself apart, feeling like you don't fit in. Having that awkward silence.
In places where people are happy you find yourself wanting to run away, and yet at the same time you don't WANT to be alone, really..
Watching their "normal" kids playing and demonstrating second by second the normal human motor skills that people don't even think about. Until their child doesn't have them.
Suppressing that self-pity day after day because it isn't about "you" really. Feeling tired and lost, and then even more tired. Losing the social skills that used to make you vibrant and shiny.
Developing new ways of life when you are unable to work in the career you spend 8 years going to college for. Battling insurance companies, changing diapers (LARGE diapers), whiping drool, ordering supplies, cleaning up g tube leaks, taking vital signs, calling doctors, watching for seizures, and knowing when a vest treatment is needed.
Knowing what it is like to sleep in a hospital for weeks at a time. The mind becoming accustomed and comfortable.
Balancing the schedule of SO MANY doctors appointments, therapy appointments, and school. Learning to always plan on things being cancelled, rescheduled, changed every day. All the time. No consistency and no planning because it almost never works out the way the plan goes.
Digging vigorously into social media for friends. Because you can't go out, and even if you do. It's the old awkward, not knowing what to say and worrying about the child at home. 9 times out of 10 something goes wrong at home.
Loving your child so much, as you watch life and milestones that everyone elses children get, just pass him by like a breeze at the shore. Walking, talking, playing, writing, singing, dancing, having friends, graduating, going to college, etc etc etc. Your child lives with you. And your reality is suddenly, he is nearly 18 and you have to do all kinds of legal crap to assign yourself his guardian. As ridiculous as it sounds, its the law. And its money you don't have. Again.
The pressure of not knowing what to do. Having to learn, every day, what to do to keep him healthy, happy, engaged. It's your responsibility to provide him with all of his life's activities. Thats a big responsibility.
Money and finances. Waiting patiently (7 months???) and counting. For the bank to modify your mortgage. Every week they tell you, we have alot of modifications and we are behind. And you wait, and worry. They said months ago they could help bring the payments down. Now they just leave you hanging on a limb. And you just want to care for your family. You just want to be a responsible person.
The isolation from all things normal. The restrictive world that having a wheelchair causes. The expensive crazy cost of all things "special needs", marked up. Fighting the insurance company when they decline paying for anything.
Not sleeping. Over eating. Turning to sweets for comfort. Taking too many naps.
Trying to find yourself, giving up. They trying agian. Then putting "you" on hold. Confusion, loss of self, and disruptive sleep. Nightmares.
They tell you so many things. But they can go home to their houses, and not have to live with the enormity of it all. Secretly they are glad they are not you. You feel special, because you have this beautiful child, full of wonder, and just an amazement every moment. And then you feel guilty for the self pity. Feeling awkward when people help you, and then feeling like you just have to ask for help to survive.
Its a blend of loving yourself, and not knowing yourself. Wondering what the future will hold for your family and your special needs child as everyone crosses over into adulthood. It was easier with little children. Getting older means more. After 21 he has no more school, so then what are you going to do. Not knowing. Because you live in the moment.
Giving your other children as much of you as you can. Realizing that they too, have isolation tendencies, and extreme creative talents. Special needs siblings with an enormous compassion and the ability to see the world from both perspectives. Keeping your marriage together when at times you feel like you just want to run.
Being a good person. Praying often. Wanting to go to church but not able to sleep enough to get up. Looking in the mirror every morning, wondering what the day will look like. Wanting to sit on a bench and just write stories and poems. Wanting to garden. Wanting to play your music. Wanting to get to YOGA class. But passing up on all of your favorite things. Because you are a busy Mom.
There is an isolation that happens when your child isn't like the rest. It is neither good nor bad. It just is. It's hard to explain. The feeling. The way it feels to push that wheelchair everywhere. But it is who you are in this life. Only one life. Passing by quickly as your age escalates.
You are only given what you can handle. You are strong. You are special. You are amazing. But really you are just you, who was forced due to circumstances to alter your reality and have faith. Faith and hope keep your head held high on the journey. To the unknown.
Julie Hasselberger
August 1, 2015
People exist around you. Things are happening all of the time. But why do you feel alone?
In groups you pull yourself apart, feeling like you don't fit in. Having that awkward silence.
In places where people are happy you find yourself wanting to run away, and yet at the same time you don't WANT to be alone, really..
Watching their "normal" kids playing and demonstrating second by second the normal human motor skills that people don't even think about. Until their child doesn't have them.
Suppressing that self-pity day after day because it isn't about "you" really. Feeling tired and lost, and then even more tired. Losing the social skills that used to make you vibrant and shiny.
Developing new ways of life when you are unable to work in the career you spend 8 years going to college for. Battling insurance companies, changing diapers (LARGE diapers), whiping drool, ordering supplies, cleaning up g tube leaks, taking vital signs, calling doctors, watching for seizures, and knowing when a vest treatment is needed.
Knowing what it is like to sleep in a hospital for weeks at a time. The mind becoming accustomed and comfortable.
Balancing the schedule of SO MANY doctors appointments, therapy appointments, and school. Learning to always plan on things being cancelled, rescheduled, changed every day. All the time. No consistency and no planning because it almost never works out the way the plan goes.
Digging vigorously into social media for friends. Because you can't go out, and even if you do. It's the old awkward, not knowing what to say and worrying about the child at home. 9 times out of 10 something goes wrong at home.
Loving your child so much, as you watch life and milestones that everyone elses children get, just pass him by like a breeze at the shore. Walking, talking, playing, writing, singing, dancing, having friends, graduating, going to college, etc etc etc. Your child lives with you. And your reality is suddenly, he is nearly 18 and you have to do all kinds of legal crap to assign yourself his guardian. As ridiculous as it sounds, its the law. And its money you don't have. Again.
The pressure of not knowing what to do. Having to learn, every day, what to do to keep him healthy, happy, engaged. It's your responsibility to provide him with all of his life's activities. Thats a big responsibility.
Money and finances. Waiting patiently (7 months???) and counting. For the bank to modify your mortgage. Every week they tell you, we have alot of modifications and we are behind. And you wait, and worry. They said months ago they could help bring the payments down. Now they just leave you hanging on a limb. And you just want to care for your family. You just want to be a responsible person.
The isolation from all things normal. The restrictive world that having a wheelchair causes. The expensive crazy cost of all things "special needs", marked up. Fighting the insurance company when they decline paying for anything.
Not sleeping. Over eating. Turning to sweets for comfort. Taking too many naps.
Trying to find yourself, giving up. They trying agian. Then putting "you" on hold. Confusion, loss of self, and disruptive sleep. Nightmares.
They tell you so many things. But they can go home to their houses, and not have to live with the enormity of it all. Secretly they are glad they are not you. You feel special, because you have this beautiful child, full of wonder, and just an amazement every moment. And then you feel guilty for the self pity. Feeling awkward when people help you, and then feeling like you just have to ask for help to survive.
Its a blend of loving yourself, and not knowing yourself. Wondering what the future will hold for your family and your special needs child as everyone crosses over into adulthood. It was easier with little children. Getting older means more. After 21 he has no more school, so then what are you going to do. Not knowing. Because you live in the moment.
Giving your other children as much of you as you can. Realizing that they too, have isolation tendencies, and extreme creative talents. Special needs siblings with an enormous compassion and the ability to see the world from both perspectives. Keeping your marriage together when at times you feel like you just want to run.
Being a good person. Praying often. Wanting to go to church but not able to sleep enough to get up. Looking in the mirror every morning, wondering what the day will look like. Wanting to sit on a bench and just write stories and poems. Wanting to garden. Wanting to play your music. Wanting to get to YOGA class. But passing up on all of your favorite things. Because you are a busy Mom.
There is an isolation that happens when your child isn't like the rest. It is neither good nor bad. It just is. It's hard to explain. The feeling. The way it feels to push that wheelchair everywhere. But it is who you are in this life. Only one life. Passing by quickly as your age escalates.
You are only given what you can handle. You are strong. You are special. You are amazing. But really you are just you, who was forced due to circumstances to alter your reality and have faith. Faith and hope keep your head held high on the journey. To the unknown.
Julie Hasselberger
August 1, 2015
Tuesday, July 28, 2015
Sunday, July 19, 2015
The day the seizures came back
I am really feeling beaten down, but not giving up. I keep praying that somehow, someway, we will get ahead. I have to take care of this kid. I did a survey, and most people said that they would need between $100,000 to $200,000 to change their lives. For me, $52,000 would put me in the position to fix up the house, sell it, downsize, put money in the bank, stay with Daniel and concentrate on his needs, get my degree finished and move south in 4 years.
So I don't know how I am even going to get myself through today, never mind will $52,000 into my bank. But I do not want anything fancy, I just want a life that isn't going to kill me with a heart attack.
I just have to keep hope in love and stay at peace in my head. Today, this morning, I woke up and the car Sarah uses had a flat tire. Seriously? I just had to laugh.
Life is insane. I am praying that our you tube channel will spread and grow, because ultimately it will help earn money, as it works.
One other interesting thing, I heard from an old friend, Kim, whose son Collin used to go to school with Daniel. She went through the same ordeal with the insurance cancelling Collin's services, and her story is in the paper today.
It is ridiculous... the way our kids are treated, its as if they just don't matter to the world. Makes keeping hope even more important friends.
IF I LOSE HOPE WHAT ELSE DO I HAVE??? My John has been incredible lately, as have my children. We wrap around eachother like a warm blanket because at the end of the day, all that matters is love.
Saturday, July 18, 2015
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