Sunday, January 26, 2014

The Value of a Life

Bookmark and Share

                     "If you truly believe in the value of life, you care about about the weakest and 
                               most vulnerable members of society" Joni Eareckson Tada

Having a child with a severe disability gives you an insight to on how people perceive the value of a life.  There have been so many things in the news lately ranging from a parent's right to determine end of life decisions for their child, to those declared medically "brain dead" and the rights of an unborn child, that likely could be born with a disability.  Doctors love to throw around terms, not medically viable, not compatible with life, has no restorative potential, or even will have no quality of life.  Yes these are real terms that myself and so many others like me have personally been told.   You might be an outsider looking in and saying to yourself, gosh those poor parents if only their child had not survived... they'd be so much better off.  But that couldn't be further from the truth.  People are naturally curious and often ask me, are you glad Noah is here with all the difficulties in life that he faces and that you all face as a family?   The answer will always be yes.   A part of me will always be broken.  I can't fix the pain that will has planted itself firmly into the depths of my soul.  I live with an emptiness, a wound that will never heal.  But that wound would be an immense hole in my life had Noah not been revived. 

Perception often is that Noah somehow himself wouldn't want to live like this - in a broken body not capable of talking, crawling, walking or being able to feed himself.  That he isn't happy.  That he lives a miserable existence.  Those are the people who don't know what it is like to hear the laughter in his voice, to experience the innocence of his tender smile, the touch of his hand which feels like a peace of heaven on earth, the joy in his eyes when he accomplishes something he is working on, the excitement he displays over things in his life that he enjoys.  He is worthy of life.  We all are.  We all are deserving of a chance to breath, a chance to live, a chance to thrive, a chance at recovery. 

As a society we have taken out the God factor where hope and faith are silenced.   Words like impossible and never take their place.  We battle for the right for life and death in medical hospitals and courtrooms all across the country. God has no place.  They've edged him out of the equation, trying to extinguish potential for miraculous and even what we used to know as divine intervention.   So what you say - I don't believe in God, miracles, divine intervention... it's all hogwash.  It's because God hasn't yet given you your own personal cross-roads, that fork in the road that forces you to decide will you buy into the theory of never and impossible?  Or will you cling to hope and faith?  Remember to chose wisely there is no going back.

A part of me believes this stems from what people don't understand, what they have not experienced, the fear that is instilled in them.  These perceptions are fed by social and news media encouraging us to focus how we view placing value on lives that are "whole" and "savable." The nature of the human ego says I cannot put myself aside to put another's needs before my own.  Which is rather a key requirement in the land of special needs.  It's a sacrifice that people try to convince you is not worthy of your time and efforts.  And after all who wants to spend money and resources on someone that isn't well... who is less than perfect?  It's just easier to terminate and eliminate the problem - the person who isn't in the eyes of society is no longer "whole." Let's pull the plug they preach... the heart beats, so what the brain isn't fixable... the life growing inside someone else is in a dead body!   A fetus is going to have disabilities, so let's make sure it just doesn't have a chance.  I've personally met some incredibly inspiring children by connecting with other families who have children with special needs.  They all steal a piece of my heart, many of them wouldn't be here if their parents had sold out and believed that these little lives were not compatible with life.  Life is not perfect for any of us, but it's so bittersweet and beautiful at the same time.   We all know that these little lives are so thankful that we believed in them and gave them a chance at life - despite all those who whispered impossible and never in our ears time and time again.   We belong to a club where all things are possible!

My challenge to anyone who reads this blog is to question and challenge the way you think about those with disabilities, those that doctors perceive clinically dead, those that will be born not compatible with life -  the lives medical professionals deem not viable, have no quality of life or restorative potential.  Give consideration to those that are behind these lives giving it everything they have and then some.  This is truly the first step in changing how those with disabilities, illness and inflictions are viewed in this country and all over the world.  Their lives have value - tremendous value.  


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Saturday, January 11, 2014


Bookmark and Share
Being a special needs parent is often tremendously lonely.   I've been naive to think that people would share the same priorities that I do.   I have a tendency to feel a deep sense of disappointment with expectations of others as it relates to Noah and our family.  But at the end of the day,  you just have to shake it off and realize that people will either get on your train or you must depart without them. 

I went to the grocery store today, and the cashier asked if I was back to work yet after the holidays.  I explained I likely could never go back to work in the traditional sense as I care full-time for my severely disabled son.  She was from another country, and was trying really hard to comprehend what cerebral palsy meant.  She thought it was a temporary condition.  Which, gosh I wish it was.   But once I explained that Noah was much like having a five year old baby that could not care for himself, she said that he was very lucky God gave him to me because where she comes from they are not permitted to live.  And she wasn't kidding.  She said unspeakable things happen that no one mentions. 

I know that some people have a really had time with phrases like "God doesn't give you more than you can handle,"  or "God chooses special parents for special children."  But those types of thoughts don't upset or bother me.  Because it's rather true, without God knowing the type of person I am and that I'd go the distance for Noah and his needs, where would he be?  In a nursing home because people think he's a family embarrassment?  Adopted because no one thought they could go the distance? Or born in another country where a "damaged" child was deemed not worthy of the gift of life?   The cashier also reminded me how lucky we are to have money, and fresh water, and a safe place to sleep.   How we come from the land of opportunity - which often causes people to do nothing more than wreck themselves and forget what their priorities should really be.   There are some people who inflict upon themselves unnecessary evils and pains who have the power and influence to change their own reality.  Noah doesn't have that luxury.  He cannot change the circumstances of his brain injury.   I cannot forget my purpose and how blessed Noah is to be alive ever.  Every time I look at Noah it is crystal clear where my priorities are.   I suppose we all have to pick what our priorities are - and I can't force or expect someone to join the most important aspect of my life.   Each person has their own lives to live however they see fit. 

After a very challenging day, that cashier gave me a lot of perspective.  I know what defines my life - my authentic self.  The person I am at the very core.  And I'm okay with the idea of God blessing us with allowing Noah to stay because he knew I would go the distance. 

This is an excerpt from the Velveteen Rabbit that tugged at my heart today, giving perspective on what it means to be loved.

Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

'Does it hurt?' asked the Rabbit.

'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.'

'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”
Margery Williams, The Velveteen Rabbit


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.