Judy Humphries - The Journey Past Why: A Lived Experience

The Journey
Past Why

A Lived Experience

Judy Humphries

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2013 Judy Humphries. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 12/03/2013

ISBN: 978-1-4918-3540-1 (sc)

ISBN: 978-1-4918-3541-8 (e)

Library of Congress Control Number: 2013920698

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Contents

Moving past why

There is no right way and there is not just one circumstance, there is just coping, a lived experience.

I am a parent of a child with disabilities. As we began our journey 22 years ago, I was confused by people who dwelled on why did this happen. This was important to me when we decided to have another child, but the question was not otherwise helpful in our daily lives. In fact those who dwelled on why often seemed stuck there.

When I began supporting individuals with disabilities and connected with other families I began to learn from many other perspectives. I was able to see choices and options from the perspective of the individual, their families and friends as well as staff and funding agencies. I observed and learned about the many ways that people choose to cope with challenges.

I did not write this to be solely for the benefit of families facing the challenge of raising children with disabilities but also for:

Families: with adult children facing disabilities due to accidents

Families: with children diagnosed with learning disabilities when they enter the school system

Families: dealing with the challenges of mental illness or physical illness

Even the challenge of having aging parents

Really this is for anyone that is dealing with unforeseen circumstances in their lives, who needs to know there is no right way or wrong way to cope . there is just coping.

February 2013

Acceptance

The answer to Why is not able to change the current circumstance because we only ask why after something has happened.

When our daughter was born we could not dwell on why this had happened, we needed to immediately focus on how to care for her. This forced us to begin moving right away, we had things we had to do. Her extended family seemed to be more caught up in the question why. When those conversations started I was probably a bit abrupt in shutting them down. Part of that was knowing that the why would not change anything now and I also think deep in my heart I wondered if I did something to make this happen.

I think that because our family was not close by and could not actively participate in her care, they didnt have anything else to do but think. Mostly thinking why? I guess in hindsight I should have found things for them to do... even though they were doing all they could just by caring!

Why does have its place:

It can be important to understand why in order to prevent the same or similar things from happening in the future. A great example is MADD, where peoples loss due to drunk driving brought people together to try and prevent the same tragedies from hurting other families.

We also see this in cases where we have come to recognize the dangers of exposure to certain chemicals or materials, like asbestos or lead. When the dangerous consequences were recognized we began to make changes that would impact the future.

When taking safety courses the instructors talk about the fact that all of the Health and Safety legislation has been written in blood, regulations that come about because someone has already been hurt or worse.

So certainly understanding why is valuable both for individuals as well as society as a whole.

Is your why something that gets you moving? That can be a great way to help you cope!

Think about how many families use their losses to educate the rest of society with runs, rides and walks to honor loved ones and bring attention to their cause!

They are definitely moving forward, it does not diminish their loss, but it helps them survive.

Ask Yourself ?

Is your why a call to action?

What actions can you take?

Possibly a new member of an active movement; a leader in a new movement; an advocate or a cheerleader for others, you will know what is right for you.

So, yes: the question can begin to move us in a direction. Again, if we dont start moving we can get stuck on why. When I have seen this question become the only focus it is like watching someone in quicksand without taking action they seem to emotionally and even physically sink lower and lower.

So: how do we start moving .

Living in the present

In order to live in the present the real question is how. How will I move forward in this new situation? You wont like it and you will still be angry, sad, confused and a huge array of other feelings but the first helpful realization is:

YOU ARE NOT ALONE .

Other people have travelled this route or have been through something similar. They have adapted, survived or hung on by the seat of their pants . and you will too!

First, be resourceful.

We were blessed to have a doctor that was caring and fortunate that she was also knowledgeable and connected. She was able to point us in the right direction for finding some of the supports we would need and the gateway for getting us appointments with other specialists we would require. We were also close to a childrens hospital, with access to many wonderful supports. The family resource center was mostly made up of volunteers and they were often people who had shared similar experiences. (Moving on by getting involved)

Ask Yourself ?

What is it that you need?

Information?

Medical help?

Planning?

Financial aid?

Start a list to clarify what you need to find out about and try to identify some of the key people to help you get started.

Do you need specialized services and supports?

Who has the connections to help you access those supports or services?

Is there a support group or association that has members that have been here before you?

Of those resources you will begin to figure out what is right for you.

My husband is not much of a talker when it comes to sharing feelings but he certainly wanted to know what the professionals had to say and those were the appointments he felt most comfortable and were a priority for him. I on the other hand am a talker! I found different resources for the need that I had. We both needed different things and often at different times, so we pursued some independently and some together and overall benefited from both. There would have been no win in forcing him to come to what he would call a touchy feely kind of experience and I am quite certain it would have caused different kinds of problems if I insisted.