The Value of a Life

                     "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.  

Love,



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

Perspective

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



Love,



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

Noah's 5th Year Video

Make a video - it's fun, easy and free!
www.onetruemedia.com

Love,



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

The Pink Shawl

Noah had a beautiful Christmas, each year he grows with excitement - the same anticipation that other children experience on Christmas.  His brother tenderly helped open his gifts and often shared gifts that were intended for him and gave them instead to Noah.  There is so much love under our humble roof.   Small blessings that truly a gift from God.  Noah received some really amazing gifts from loving hearts, and he adored each one.  So much thought went into his gifts and they match him perfectly!   He was happy the entire day, full of laughter and excited squeals.

Just when I thought my heart could swell with no more love for the gift of happiness in my children's eyes, I opened one last gift under the tree.  A little wrapped package with a card attached.  It was a from a friend that I acquired shortly before Noah's birth, in a mommy-to-be group.  And we've kept in touch since that time, often sharing life's ups and downs -  mostly always being a listening ear and a long distance hug.   I opened the small card and it read:

"On hard days, wrap yourself in this shawl and know that you are not alone.  You have people all around the world who love and admire you and who wish they could do more to lighten your load.  And God is always there for you too, even in the moments when it doesn't feel like it.  And on good days, you can wrap yourself in the shawl and celebrate.  I'm praying for many good days ahead.  Happy 5th Anniversary of being a truly magnificent mother!  You work harder, fight harder, love harder than anyone else I know.  This is a prayer shawl for you, from our church's knitting ministry.  The person made it prayed for the recipient as she made it, and I prayed for you as I chose and wrapped it."

The card that describes the gift: " O Loving God, Renew and strengthen the person who receives this shawl, today and every day.  Grant them peace to lighten life's journey and provide hope to sustain them.  May this gift of yarn and prayers woven together be a sign of Your loving presence.  Hear our prayers for the one who uses it, that You would surround them with tranquility when they are afraid, understanding when perplexed, warmth when they are weary, and peace when they feel uncertain.  May this shawl remind them that they are not alone.  Amen."

It was the most meaningful and special gift I received.  The true heart and gift of Christmas.  That one gift brought me such feelings of comfort and of being loved during all of the hard times in life - for all that I experience.  It felt as if God sent me this care package via the heart of another to remind me that I'm indeed not alone and that through it all I can continue to find hope in all things possible.  My pink shawl to carry me through all the pain and the joy.

I pray that you all felt that kind of powerful love this holiday season, it is the kind of love that will carry you into the new year to find strength and courage to assist you through life's journey.   Merry Christmas to all.

Love,



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

Noah's 5th Birthday!

Make a video - it's fun, easy and free!
www.onetruemedia.com

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

Noah Goes Firefly!

Undoubtedly it goes without saying that I'm in love with so many exciting products coming from the UK.  Imagine our excitement when we learned of a great new product being offered now in the USA called the Firefly!  It's going to be incredible for parents who have a child who cannot sit unassisted in a chair, a grocery cart, or swing.  It is truly a must have item if you have a child with special needs.  It will be available in two sizes, size 1 and size 2.   The size 1 currently doesn't have an adjustable headrest, but still offers a great deal of support.  The size 2 will have an adjustable headrest that will continue to aid and benefit those children who lack in head control and have a tendency for their head to go side to side.   This chair is amazing.   The price retails for $275, which in the land of special needs makes this one of the more affordable products than most and arrives within 72 hours of purchase!

The Firefly Seat

We sat Noah up in a kitchen chair, he also can sit now in grocery carts that have the toddler seats in front, and even mall shopping carts.  Something he couldn't do before.  It opens a whole new world for parents who aren't forced into traveling with a pediatric stroller or wheelchair.  Parents with multiple children will especially love this product as it gives their child with special needs more freedom to participate alongside their able-bodied siblings.   I seen this video the other day of a dad that adapted a remote control toddler car for his son which special needs and both siblings were able to ride and play side by side.  This is exactly the kind of thing the Firefly seat will be a true blessing for.  Firefly is a brand of products designed by Leckey to support and enchance special needs family participation. I've been so impressed with all the products produced by Leckey that Noah has.  And they are a company that genuinely cares about their customers and needs.  It is often rare to find a company that listens to what the community needs, and Leckey does just that.  Many of the products they carry are coming from the ideas of parents who have children with special needs.   More companies need to follow their lead.  They are blazing a great trail.  And as a result are producing pieces of equipment that are essential to improving the lives of children with special needs. 

Noah in the Size 1 Firefly!

The seat is very lightweight and it travels well, and snaps in fast.  The really great thing is that it hugs the child from the sides and gives them the shoulder support they need to sit comfortably upright.  This is great for even children who usually need to sit at a reclined angle in order to be comfortable.   We've been through a lot of equipment with Noah and this one gets 4.5 stars, and only because I think both models could likely benefit from an adjustable headrest.  Leckey is a company that cares about making a customer, not just making a sale.  Something the special needs community needs.  The Firefly would look amazing under the Christmas Tree gift wrapped with a bow!  It will make the new year for you and your child easier and more comfortable.

Here is the link to check out this amazing product:

http://bit.ly/J6jVJQ

Love,




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

The Magic of Santa

Santa represents the concept of kindness, peace, giving and unconditional love.  He brings about memories of  the perfect cup of hot chocolate with miniature marshmallows on a cold winter's day, the sound of "I'll be Home for Christmas" dancing in your mind, the perfect doll that you wanted left under the tree.  Santa brings beautiful anticipation and hope in all things possible - the magic of Christmas.   He is the gleam in a child's eye and the excitement that resides in a tender heart.  A true representation of all that is pure of childhood innocence. 

We often forget that magic that touches our lives as we grow older, and somehow that spark is again discovered when you have the opportunity to re-live that magic through the eyes of your own children.   Noah has always adored Christmas time.  Santa, elves and reindeer creating laughter in a child often as early as July of each year.   Noah is what inspires us to even put up the Christmas tree and decorations earlier and earlier with each passing year.   His laughter and excitement entertain our hearts as parents with unbelievable delight.  We remain forever grateful that despite Noah's tremendous challenges that he is happy and he knows that he is loved - the joy he finds in the smallest of holiday spirit is an unbelievable blessing. 

Today our friends at North Metro Fire Department gifted Noah with a visit from Santa at home.  They sent for Santa all the way from the North Pole, and coordinated his visit with a handful of loving helpers to visit him and his little brother.  It's a such a special moment when you see that fire truck pull up and know the love that has just arrived for your child that can't otherwise visit Santa comfortably or safely at a mall.  Santa had the coolest sunglasses today.  He came in the afternoon when it was still daylight.  Santa rocks his shades!  He had an amazing team of volunteers who were filled with such love and kindness.  Santa held Noah, while he enjoyed playing in his beard - a sensory seeking thing he's always loved to do.  Santa was so patient and understanding of Noah's needs and brought him and his brother some really neat airplane toys that launch.  Santa launched it into one of his helpers and we all were a bit surprised on how powerful that toy really was!  It gave us all a really great laugh as the rest of Santa's helpers tried to take cover just in case Santa decided to aim that airplane again! 

Noah's little brother, Luke, wasn't so certain of Santa this year.  The first time he's really showed any apprehension about Santa, but also likely the first year this is all starting to make sense to him now that he's older.  It took him a little while to warm up to the idea of sitting close to Santa but he finally was able to do it, which gave Noah even more time to tell Santa his wish list.  I think Noah rather preferred to have Santa mostly to himself.  We were all able to take pictures of Santa and his team outside our house.   Santa's team was so sweet, a little boy in the neighborhood came out to see what was going on and Santa and his team gifted him with a firefighter hat and Santa told him he'd be back for him as well Christmas Eve.   There are moments in life where you feel your heart could often explode from the little happiness that other people create for your difficult journey.  They see only a child that they want to help at the holidays - a child worth just as much love and kindness as the next.  I pray they all with be blessed with the same blessings they have bestowed up on us today.  They are building memories for us that we will treasure forever with Noah and his little brother.

"They err who thinks Santa Claus comes down through the chimney; he really enters through the heart."  Paul M. Ell 

Love,

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