I Can Never Die… No Matter What!

 

“I can never die, or get sick or get old”

-Stephanie

 

When these words came out of my mouth I was met with the harsh realization of what it was that I was saying.  Who say’s that?  What does that even mean?  For me those words were a symbolization of a broken person.  In so many ways I am successful in life but in my journey with my son and his Autism, I have yet to feel like anything less than a failure.  A broken person.  Broken by the understanding that I may always have to care for my disabled son.  The understanding that he may never be independent.  Is it negative thinking? No.  It’s “real” thinking, it’s statistical thinking, it’s scientific thinking.  It is thinking based on the cases, the numbers and the results.  It isn’t based on negativity or feeling sorry for myself, it is based on what is real.  What is true and what is possible.  It is possible that he will never be capable of independent living.  That is crushing for me.  It causes me to feel like I can never leave his side.  Can you see where those words at the very beginning of this post come from?  

I ask myself several times a day if I will ever be able to live life normally or is this just the beginning of what will always be.  My life’s energy is spent on my children and being sure their needs are met.  This probably isn’t normal or even healthy but its what my life is about right now.  I often wonder once my son’s biggest advocates are gone, what will happen.  His father and I are his number one fans and always in his corner but when we are no longer here, what will happen to my child.  Children with Autism grow into adults with Autism.  It’s more acceptable when they are little and excuses are made for them and some people overlook the behaviors but once they are older and become adults, people are sometimes way more judgmental.  

Parents don’t usually think about their own mortality or the lives of their children so early in life, but when your world is rocked by a disability or diagnosis you begin to question everything you have ever known about the world.  Suddenly the world isn’t such a familiar place.  Things don’t look the same, smell the same or taste the same. I have no other way to emphasize the difference that takes place.  Everything you know is just gone.  I feel like I am learning everyday.  I have forgot all I know and need to start over.  After all, this is a new life and this is a new way to live life.  

I find that I am more often a ball of emotions than not.  I can be at the grocery store shopping and trying to find everything gluten-free and instantly I can feel the emotions rising to the surface.  The frustration of not being able to perfect the “Autism Diet” begins to boil beneath my skin.  I become angry that I even have to do this. Why am I even here having to do this? It’s painful.  I find that I have to quickly collect my things and my tears and leave the store.  The strangers around me won’t understand, how could they?  They will think I am simply crazy for crying in the middle of the freezer section of the grocery store.  They won’t understand the fact that I am overwhelmed from lack of sleep, an intense schedule, a million doctor appointments and little support.  They won’t understand the need to cry over my inability to find this product in a gluten-free form or why it is exasperating to have to buy two of everything.  They won’t understand and if they did they would still never know why I am crying.  A few weeks ago, I was in the steaming hot shower and it was the first time that day that I was allowed a moment to myself.  In that moment, I was able to do all my thinking from the day.  I don’t know if that was a good thing or bad thing.  The longer the thoughts began to run through my head the sadder I began to feel until eventually I found myself in tears.  I allowed all of those emotions to find their way out through my tears.  It helped me quite a bit.

In the days that followed I found myself extremely emotional and one night while having a deep conversation with my 8 year old daughter, I had to fight the urge to ask her a question that had been on my mind for weeks.  I could no longer fight the need to ask. “Mya, you always take care of your brother no matter what right?” Is that even a question? More like a suggestion.  She was quiet for just a moment and then she replied, “of course, I love him and I will do it and I will enjoy it.”  I found myself so overwhelmed at her response.  It was both scary and reassuring.  Now I could finally die, right? Now that when my time here on earth comes to an end, I knew that she was going to carry on my work.  That was the most reassuring feeling, but then the thoughts of the responsibility came rushing in.  All the things that it is going to take and all that must be sacrificed popped into my mind.  I don’t want that for her.  I never have.  I want her to live her own life and enjoy it.  To go to college, get married and to have a family of her own someday.  How can that involve caring for a brother?  Would her quality of life be sacrificed by my requests or suggestion.  How could I ask her to bare such a burden? It didn’t feel right but I felt desperate.  This was one of the only people that would always understand him and love him.  And yes, it is very early to be thinking about the end but when you have so many things to worry about these are the thoughts that run through your mind constantly.  Especially because tomorrow isn’t promised to anyone, the only thing promised is death.

and still…..  I can’t die, I can’t get old and I cannot get sick!  I just can’t.

xoxo

Will The Pain Last Forever? Emails Included

I asked a dear friend this question today because she too is a mother of a disabled child.  The emails are below >>>

 

Date: September 24th 2013 11:12am

From: *******

To: *********

Subject: Hi, E****

 

Dearest E****,

Will it ever stop hurting? I know that you know the heartache.

 

Stephanie

Sent from my iPhone

 

 

(((((((((((((((After writing this email I quickly sent her another.))))))))))))))))))

 

 

Date: September 24th 2013 11:15am

From: *******

To: *********

Subject: Hi, E****

 

Dearest E****,

I hope my last email didn’t offend you.  I couldn’t resist asking you if the pain lasts forever.  Forever seems like a long time.

 

Stephanie

Sent from my iPhone

 

She simply replied, “No, the pain doesn’t last forever.” and for some reason hearing that from her comforted me to know that this won’t last forever.  I thank her for everything that she has been to me and is to me now.  Someone so angelic that has really taken me under her wing and been so kind to me when I probably didn’t deserve.  I think that some people in this world are angels sent by God to protect us and there is no doubt in my mind that she is one of them.  Thank you.

They Say The Good Die Young….

 

And for some reason I cannot understand this….

 Well let me back up and explain why I am feeling the way I feel.  My son had his appointment today for his official diagnosis.  Leading up to the appointment this morning I was restless and not really sure of what was going to happen.  Would it be confirmed officially this time, that he is autistic or would they delay his diagnosis?  Would they say he is growing out of it or they no longer see the things in him I see?  The whole 2 hour ride this morning I was on edge, nervous, tired from lack of sleep and confused.  Finally this day had come but I am not sure I wanted it as badly as I once did.  Something was going to happen today that could possibly never be taken back.  When we got to the appointment my nerves had settled.  It was going to be what it was going to be and I sure as hell couldn’t change anything.  Within the first few moments of observing Kian, the Dr. came over and said, “Just after a few moments with him I can see the characteristics of Autism.” On the inside that knocked me off my feet.  How can anyone see after only a few moments, literally only seconds with my son that my child was autistic? Why has it become so overwhelmingly obvious?  Maybe I was right to think that everyone in the world will be able to see that.  Maybe I was that dumb all along that I had still not even felt 100% sure at times that Kian was autistic.  Even after a previous evaluation.  After regaining my composure on the inside I took a deep breath and was ready to roll.  We went back and did the evaluation and honestly there was nothing surprising or odd that occurred.  See prior to the appointment I was convinced my son would be a mild case of autism at best with the possibility of being moderate.  I was certain my baby was too bright and too full of life to be anything other.  Well I was never truly prepared for what I was going to hear.  As I waited on him to tally up all of the final scores and make a conclusion.  I was nervous but I was still anticipating the best possible outcome, if there is a best possible outcome with autism.  I wouldn’t get my wish today, I usually never do anymore.  The Dr. returned from his office and sat down to talk…. and I am not really even sure what he said after he officially diagnosed my son with Severe Autism as my mind is heavily clouded these days.  I saw his lips moving and I am sure there was some sound coming out but nothing could quiet the screams or crumbling that I felt inside.  It’s like lethal injection in a way.  You can feel all the pain and heartache but you cannot move, speak or even breathe at times.  You know you are alive but it’s outer body.  The word severe is crushing, devastating and almost unspeakable.  I am not sure if I will ever use the word again after this blog post.  What does severe mean? What does it mean? I cannot process even a simple definition as it seems way more than I can comprehend.  How could something be way worse than I could have imagined? The Dr was very positive and set up all the info that we needed for all of the therapies and medical needs we were going to have ahead of us.  But that doesn’t change the heart of a grieving mother.  

The truth is, I was grieving long before today.  I was grieving over what was to come with my son for a long time.  I knew something was to come.  There was some reason my son has yet to acknowledge my presence or call me, “mommy.”  But if you can believe it, I was grieving for more than one reason.  I know right? Tragedy seems to occur around the same time frames sometimes.  As some of you know my father was diagnosed with Cancer not to long ago.  What a devastating blow for any family to suffer.  Things have not been as cookie cutter or easy as I have led some to believe.  My father’s time here is dwindling down and things don’t look as good as I had once hoped.  He has such a will to survive and such a love of life. He is so positive and I think it has been hard for him to be brutally honest with me because he loves me and doesn’t want me to be hurt.  He has kept some tough information from me at times.  But can I blame him? No, not really because until today I had kept my son’s diagnosis from him.  I hadn’t even mentioned the trauma that we were going through with my son.  I hadn’t mentioned the sleepless nights, long days or the hours spent crying.  I hadn’t mentioned the desperation this has caused, the nights spent up researching or the nights I cry myself to sleep.  I had kept this information from him to protect him and he had done the same.  I think we both realized today that being an open book about what is to come is critical.  I simply can’t imagine my father leaving this earth without spending one last day with him.. one last moment together.

So back to the beginning of this blog post we go.  They say the good die young. Why is that? Why do the good have to die young at all?  Why do the good get sick? Get cancer? Or even get autism?  My father has always been an exceptional man, a business owner, served his country, the local sheriffs department, paid his taxes and was kind to all around him.  Why does he have to die so much earlier than most? Why does he have to suffer with cancer? When there are so many evil people in this world in perfect health.  My son is a beautiful, vibrant and loving person.  He has been kind to every person he has ever come into contact with.  Why is he suffering with autism?  He doesn’t deserve this.  What could two of the most important people in my life, have done to deserve such tragic outcomes?  What I have I done? I think that there are just so many questions in my mind.  And right now I cannot help but sit in the dark and empty “why me” phase.

When people you love are suffering around you, you suffer.  There is no remedy or medicine to fix a grieving heart.  There is no words or saying that can make a bad situation better.  Only God has a say in the end.  I have never been more devoted to my Heavenly Father than I am today and he gives me the strength to carry on.  Every day I wake up, unsure if I can even go on another day.  You can have a great career, nice place to live and all the luxuries and money in the world but when you don’t have your health life can really put a whooping on you.  That’s often how I feel, beaten.  I have a beautiful family, a successful significant other, incredible long time friends and a college education and I still find myself in a bit of a depression over my dad & son.

I try to share some positive and negative (rather real) things on this blog always and I use my blog as a place of self expression and as an outlet to say how I feel not really caring about who judges me.  For every person that is going to judge me for my reality 2 more are going to help me, inspire me and be inspired by me.  The people who love me always will and the ones who don’t never even tried.  So there you have it.

 

xoxo