Why You Should Care About Special Needs Children

 

It can be difficult to understand the complexities of raising a special needs child if this calling is not part of your daily reality. I get it. I never gave these children nor their caretakers a second thought before I had a handicapped child. It’s hard to empathize with a situation without experience.

 

My goal in writing – in books, on the blog, and on social media – is to tell stories that portray all of the aspects of raising a special needs child – the demanding, the taxing, the beautiful, and the joy.

 

There is undoubtedly a blessing. These kids are closer to Heaven than we will ever be with their innocence and child-like faith. They teach us invaluable lessons about the nature of our heavenly father’s love and care for his children. They model joy, perseverance, and faith in quantities us “normal” folk can only dream about BUT –

 

Raising a special needs child is a massively exhausting undertaking as well.

 

A few weeks ago a friend’s 8 year old daughter unexpectedly passed away. This little girl was never supposed to survive; however, these kids often have a way of proving the experts wrong. I recently asked her mama if the new ease of life was haunting because when you live in special needs world, there are rarely moments of ease. It’s like being in a combat zone. You’re always mentally anticipating your child’s next basic needs – hunger, pain, angst, smell, what, where, when, why – all the time. These kids often don’t grow up and become independent so there is no end in sight which can feel overwhelming.

 

One of my greatest goals with The Lucas Project – a non-profit organization to assist special needs families in rural Tennessee – is to educate people on why they should care – even if it’s not a part of their daily reality.

 

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:40

 

These children are the least of the least of the least of these. They often have the mental and emotional capacity of an infant. They are usually physically unable to care for themselves without continual assistance, and without the loving intervention of caretakers, these children could not survive.

 

I would admonish you to care about these kids and their families because you don’t have to care, and that’s a blessing.

 

Special needs may not be a part of your daily reality, but it is a reality for 6.7 million children (nces.ed.gov) and often includes:

 

Bathing a grown child

Feeding – either by utensil or tube feeding – often restrained in a special chair.

Diapering a thirteen year old

Wondering at times if one day you’ll be diapering a thirty year old.

Restraining a teenager who has become aggressive due to puberty.

Entering the local ER in the middle of the night to play a guessing game for the next 24 hours as you try to determine the cause of angst in your non-verbal child.

Declining an invitation for a fun event because there is no one to watch your child, and he or she would cause disruptions and outbursts.

Attempting to distract a child who is frustrated and banging his head against his crib.

Sleeping with a baby monitor beside your head for 18 + years

Getting up multiple times in the middle of the night to administer meds, tubes or breathing equipment or to make sure your child is still alive.

Spending the majority of your free time in a doctor or therapist’s office.

Not being alone with your spouse in years because there is no one you trust to care for your child in your absence.

Suffering extreme pain and popping Advil like it’s candy because your child has grown too large for you to comfortably handle, and the strain is taking a toll on your aging body.

 

You should care about caretakers who experience stress, anxiety, exhaustion, and depression on a regular basis but don’t have the funds nor the time to address the problem, and in rural environments, lacking in professionals to even help address the problem!

 

You should care if you live where resources are plentiful because there are people who live in rural communities where resources are sorely lacking.

 

You should care if your children are healthy because there are parents who manage a child’s chronic illness every day of their lives.

 

You should care because we are all a part of this grand body known as humanity, and we have a moral obligation to care for one another, especially the least of these, like our lives depend upon it – because they do.

 

Please consider a donation to The Lucas Project so that we can all begin caring or check out TheLucasProject.org to learn more.

 

Just keep livin.

How to Choose Thankfulness in the Midst of Grief – A Winter Walk

winter.jpgMany moons ago, on a dark winter night, as the children lay nestled in warm beds and my husband reclined pale and motionless in his chair, I wrapped myself in a thick coat, pulled boots upon weary feet, and ventured out into the bitter loneliness.

My emergence was greeted by a silent dirt road, my being enveloped by the brisk air as the blackness provided shelter from the rest of humanity. Nothing but stillness awaited my pilgrimage. I was free.

I glanced to the left and recognized a spattering of houses and to the right – nothing but naked branches swaying in the stagnant air. I leaned into the vacancy and began moving, one foot in front of the other – the vicious cold biting my face and freezing the tears as they fell. I walked in penance for whatever grave sin I had committed – a sin which had led to a recent life of so much pain and heartache. I knew that surely if my husband held the strength to wage war against numerous rounds of poison, and my son had the strength to defy the proclamations of death voiced against him, and my children possessed the strength to look into the abyss of eternity staring back at them through their daddy’s hollow gaze, then surely – SURELY – I could face whatever lay ahead. And so I walked. I walked the coals – the clear crystal coals intermingled with the frozen ground. And nothing moved. And all was silent.

I walked and I paused and I crumpled to the earth, fists curled and pumping into the night sky –

“CURSE YOU NIGHT!” I screamed.

I screamed and I screamed until the noise was deafened by gasps – gasps of oxygen being pumped into a broken heart, gasps of air reviving a weary soul, and then I rose, yet again, to face my tormentor and crumpled beneath the weight of the heavy cold air. I wrestled and rose and cursed and moaned and fell again and again and again, all to the beat of the maestro’s baton, to the beat of the never-ending drum of life.

Eventually I grew weary, as we all do, and I turned back– slowly fixing my gaze to reality, the dim lights flickering through the swaying trees – ready to return to my life- a haven of pain and grief and joy.

This Do In Remembrance Of Me

Breaking the bread and drinking the cup – wrestling, walking, moaning, cursing, accepting – traditions which enable our remembrance. The bread and the wine; the aching joints and all of the movements that stir our remembrance of something greater than ourselves – a remembrance of His faithfulness.

I still walk in the bitter air, but I no longer seek the solitude of the night. I now turn to face the warmth of the sun, often walking hand in hand with those I love – those born of the light. The bitter cold of what was and the warmth of what is – of how life can unravel at any moment into something bright and beautiful and unexpected.

Choosing life. Choosing warmth. Choosing light. Choosing to Just Keep Livin.

The Ronne Recap – 2017.

2017. What a year.  Some would say this was the year I lost my mind just a little bit.  Some would say this was the year I also found myself just a little bit.  2017 was the year Ryan and I turned 40 – which we each handled very differently.  It was the year we made some difficult decisions personally and spiritually.  It was the year of growth to say the least.  Here is our unofficial Christmas/New Year’s letter – affectionately known as The Ronne Recap.
Continue reading “The Ronne Recap – 2017.”

A New Desk and A Podcast Debut

desk1Remember the old metal table I had my eye on in my husband’s junk pile

awhile back?

It’s not an old metal table anymore! Not only has he masterfully restored it to a beautiful new desk, but he’s also masterfully restored an old barn on our property into a quiet space for me to write and practice yoga.  Continue reading “A New Desk and A Podcast Debut”