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.

Today I’m sharing with you four of my all time favorite cookbooks.

I get it, many of you no longer use cookbooks like we all did twenty years ago with the rise of online sites like Pinterest, and allrecipes.com which can provide any 5 star recipe for anything at any time of day but… there are some strange souls still out there, just like myself, who enjoy nothing more than curling up with a real cookbook, in all of its tattered, splattered and mangled glory. I probably own 50+ cookbooks – most purchased at Goodwill or garage sales, including two of the ones mentioned today. All of these can be purchased used on Amazon for under $2.00 – totally worth the pure joy (and tastiness) they’ll bring to your life. Continue reading “Meet Some of my Favorite Cookbooks”

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I officially met Brenda online about two years ago. Somehow the two of us connected through Instagram, and she graciously volunteered to review my newly published memoir Sunlight Burning at Midnight.  I was a little awe struck with her being the first real author to volunteer to review my book.  We later crossed paths again at a writer’s conference where I met her in person, and she is the real deal.  She gave me a big hug as I blabbered on and on about how honored I was that she actually read my book. She has recently written another book (she’s way speedier than I am – but most of her babies have flown the coop in my defense), a wonderful book called Fledge, Launching your Kids Without Losing your Mind, which I enjoyed immensely.  I’m not officially in the fledging stage, but I recognize that it is just around the corner, and this book was full of wisdom, laughter, and heart warming stories.  Brenda is not afraid to share her shortcomings and failures throughout the journey, and these honest stories are what connected me to her words, and I’m sure will connect you as well.  Continue reading “5 Truths About Stress by Author Brenda L. Yoder {and a giveaway!}”

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I shooed one of my children out of the kitchen, yet again, annoyed that I had to hear another complaint of boredom or some long winded tale about how one of their siblings had grossly mistreated them.  It sure felt like we were on day 100 million of this year’s particularly long winter break which continued on and on with the recent bout of inclement weather and now a flu crisis circulating throughout the schools.

“Aghhh, I sighed, frustrated again at how much work all of the kids were during these days without school. I didn’t understand how they could complain of boredom so often. We had purchased this beautiful property in the middle of nowhere on 30 acres of land, the river in the backyard, with the expectation that our children would spend their days romping in the fields, building forts, playing tag and hide and seek and whatever else they were able to convince one another to play, but that wasn’t generally the case.  Usually they were inside belly aching about how bored they were.

I returned to prepping for dinner that evening, a slow simmering chicken curry; garlic, onions, ginger and jalapenos chopped and sizzling in the pan as music played in the background,

“I’ll praise you in this storm” belted out an old time favorite of mine by the popular group Casting Crowns.

I’d been experiencing a bit of a faith crisis in the recent months as I desperately tried to remain in control as my life felt more and more out of control. Makes sense, right? Hormonal issues that inevitably arrive with aging, teaching which I loved but didn’t love as much as writing, writing which is my passion but doesn’t really pay the bills – at least not yet, raising 8 kids – now a few teenagers and a toddler; struggling to do right by our handicapped son Lucas, but in pursuing the best options for him also needing to sacrifice more of our limited resources and time. So many balls in the air.

It all felt overwhelming most of the time, and I knew I wasn’t handling it well.  Lately I spent most of my prayer time complaining, grumbling, and begging for super human strength to get through the days – annoyed that God would bequeath so many responsibilities upon my aging shoulders.

Praise you in this storm, huh,” I muttered.  I had so believed those words during some of the most difficult days of life – as a baby grew in my belly in 2004 – a child proclaimed to be dead even before taking his first breath and then again as my first husband took his last breath here on earth and now, when I had eight healthy children and a healthy husband, a good marriage, all of my needs met, I couldn’t muster up some praise in this pathetic little pity party of a storm I was having for myself?

I wasn’t even sure what exactly I believed anymore. I had faith, for sure, but what did that mean?  I had recently enjoyed listening to diverse preachers and teachers of the word and this had in turn caused me to question many of the traditional tenants of my faith including a woman’s role, the church, what the first church actually looked like and what is all meant in my search for community, identity, and faith in action. 

“Jesus help” I sighed in indignation and frustration.

“Go Play” I heard gently whispered  –

“What?” I replied

“Go Play! Stop complaining and stop focusing on the negative and stop stressing about all of the tenants of ME, and stop all of the belly aching and just go play! Enjoy the life I made for you! Bask in my creation, jump on the trampoline with your kids, breathe in the beauty of nature all around, enjoy your life, enjoy what I have created for you – for your pleasure!  Take joy in the food you are preparing, savor the chocolate pie, sip the chardonnay, make love to your husband, read a good book, teach your daughters how to sew – GO PLAY!”

Could it be that all of my questions about my life, my faith, and my children could be answered in one simple command?  Go Play?  It’s what I desired for my children – to stop complaining and bickering and go play!  To enjoy what we had purchased for them!  To enjoy the beauty of their lives!  Could it possibly be that the God of the universe just wanted the same for his child?  For me to honor him through my enjoyment of what he’s blessed me with? 

My perspective shifted as it usually does when the Almighty has words with me.  A slow smile crept across my face as I poured myself a glass of chardonnay, wrapped up the kitchen duties and headed to the porch to sit with my husband.  As I opened the back door, still slightly hesitant about leaving so many tasks undone, I heard a whisper laced in joy urging me forward,

“Yes, go play.”

Just keep livin!