Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Wednesday, April 29, 2015

Let it be

As you know, I am a special needs parent.

Lately, I have been thinking alot about creating a job title for myself.

Who am I exactly?

What is it that I do?

If I whittle down all my responsibilities into one overall title, what would you call me?

Here's what I've come up with:

I am a manager, trying to minimize the effect of long-term chronic illness on my family.

To whittle it down even further, I am a fixer.


Children diagnosed with special needs often suffer from a variety of ailments associated with their condition, these can be severe mental, physical or emotional issues. Minimizing the pain and side effect of these issues requires the assistance of specialists, lots and lots of specialists.

Specialists who also help to fix things.

The way I figure it, the more specialists, the better.

The more I fix my children the better they will be, right.?

Wrong.

I am beginning to notice that my thinking is flawed.

Is all of this fixing really improving my children's well-being?

Or has my mantra become more of a monster?

Are we all becoming too stressed and fatigued?

Victims of the long term effect of constant movement.

Am I transforming into a non-stop fix-it machine?

A human being obsessed with controlling variables.

And is this obsession leading to a full blown need to control everything?

Or in other words, an overwhelming feeling of anxiousness.

Yes, in the world of psychiatry, control issues and symptoms of anxiety are indeed interchangeable.


Interestingly enough,  I have noticed that lately when I pose questions to the universe,

I have been getting some pretty good answers.

This time I questioned, I was surfing the web and stumbled upon an article about Paul McCartney and the Beatles. It was discussing the origin of the song, "Let it be". The song was written by Paul McCartney and references several times the Mother Mary coming to him. Many folks assume this reference to be describing the Virgin Mary.

In several interviews however, Paul insists that it is a reference to his mother, Mary, who died when he was 14 years old. At the time he wrote this song, he and the band were experiencing interpersonal difficulties.

Paul found himself tossing and turning in bed as he lamented over these problems. Eventually, he fell asleep and dreamed of his mother, Mary who came to him throughout the dream advising him to "let it be" to stop trying to control things and allow them instead to fall naturally into place.

He awoke in the morning feeling refreshed with a new desire to allow things to flow more naturally. His renewed attitude encouraged collaboration and the group was able to get over their differences to create more music. This experience inspired him to write the song "Let it be"


This lesson resonated with me and I realized that perhaps I too need to do the same.

I need to resist the urge to fix, to control, to manage.

I need to allow the music to flow.

Despite my life's job description, my strong motivation to improve my children's lives and my frantic fix-it pace, these activities can become habit forming and destructive sending me spiraling down a road that leads to nothing but anxiousness, depression and self destruction.

Indeed a long and winding road.....without a happy ending.

And so, I have decided like Paul, to refresh my thinking, to slow things down, to cancel appointments, to stop fixing.

I will allow our lives to flow more naturally and in-tune with the rhythm of the world.

I have faith that this approach will bring us exactly what we need.

I am devoting myself to this new mantra,
for the health and well being of my family
and myself, I will learn to...
Let it be
 
When I find myself in times of trouble
Mother Mary comes to me
Speaking words of wisdom, let it be

And in my hour of darkness
She is standing right in front of me
Speaking words of wisdom, let it be

Let it be, let it be
Let it be, let it be
Whisper words of wisdom
Let it be

And when all the brokenhearted people
Living in the world agree
There will be an answer, let it be

For though they may be parted
There is still a chance that they will see
There will be an answer, let it be

Let it be, let it be
Let it be, let it be
Yeah, there will be an answer let it be

Let it be, let it be
Let it be, let it be
Whisper words of wisdom
Let it be

Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be

And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be

I wake up to the sound of music
Mother Mary comes to me
Speaking words of wisdom, let it be

Yeah, let it be, let it be
Let it be, yeah, let it be
There will be an answer, let it be

Let it be, let it be
Let it be, yeah, let it be
Whisper words of wisdom
Let it be
 

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