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