Gathering

The past couple of months there has been a lack of peace in my home, and I often thought, this mothering gig really isn’t my thing anymore. 4 teenagers, one with profound special needs, a pre teen, a 10 year old, a 9 year old, and a four year old who has no lack of confidence. It was a lot. Between health and job and hormonal issues which led to emotional issues and arguing and backtalk and snarkiness and bad attitudes and the older kids teaching the younger kids things they had no business knowing; the whole thing was a big honkin cup that overfloweth… or perhaps, it was more like a kitchen sink or the bathtub spilling over & it was causing significant damage. And we – the parents – should have immediately steered the ship back on course, but instead we bickered & bitched & complained as we held on for dear life to the raft boat the kids threw us when they made us walk the plank.

This sudden change in the family dynamic was attributed to a few circumstances: one, everyone was getting older and hormonal and becoming more opinionated & two, our move to an urban community where the kids had opportunities for activities, sleepovers, and jobs and the focus slowly shifted from the family unit – a strong unit we had in rural America where we relied heavily on each other because it was all we had – to individualized focus “You take care of you, and I’ll take care of me” & as long as the older crew took ownership of themselves: jobs, food, school, homework, play – we didn’t question much. We reasoned it was simply a stressful time in our life and “this too shall pass” and then…

Then, a few weeks ago, I said to my husband “I really miss family dinners.” You see, with the introduction of jobs and late nights and neighborhood kids to play with and everyone fending for themselves, and in turn each individual grabbing a bite to eat here and there, dinner time as a family had become almost obsolete – the rare exception in our family since our conception in 2011. For 8 years, we have religiously sat down at the dinner table and enjoyed a meal together – religiously until the move this past December. When Ryan and I married, we knew this tradition would provide a foundation to our success as a blended family – the art of gathering around a table for a home cooked meal and offering a blessing for not only the food we were about to eat but also for his faithfulness through our lives. We knew that the table would provide the foundation for community and connectedness in our newly blended home and the absence of the table would only leave a void and disconnect.

We recently reincorporated family dinner night. It looks a little different than it did in rural America, and we eat later – around 6 now because of play time with the neighborhood kids. We’ve made it a requirement for any child who is home that evening, and my oh my, what a difference we’ve seen already. Attitudes have changed and lightened as we laugh around the table partaking in fresh pasta and warm bread. I like my kids again & I think they might like me too as the focus has shifted, and we get to know each other on a heart level – on a real level- rather than just co-existing.

There is so much chatter in the world today about how lonely we all are, how depressed and isolated and longing for community, and this is not only true for ourselves as adults, but it’s desperately true for our kids. Our homes need to be safe places of respect & connections and what better way to foster these desperately needed essentials than around a table? What better way to encourage conversations? And what better way to show love than to invest our time, our most precious commodity, in them? Give it a try. You won’t regret it ❤

Just keep livin.

Luke’s Brain

I often struggle to understand or explain Luke’s thought process to others. Luke, my 15 year old primarily non-verbal son with profound special needs. Friends, bystanders or even specialists will inquire about where he is developmentally and that answer is difficult to identify. Luke’s brain doesn’t seem to process like typical brains – whatever a typical brain is – but there is a baseline that we all adhere to and he doesn’t land linearly on it – or near it at all. He tends to land here and there and everywhere. He understands more than he can comprehend & yet there is a process that is uniquely his. I believe at times it’s clear to Luke what he desires, but at other times it’s not, and so he’s not able to articulate exactly what he wants. For instance, when he says Mother Goose this does not mean he wants Mother Goose. It means I don’t like what I’m watching so please change it until I stop screaming which will then be your indication that I’ve made a decision. All he knows is that there is something in his sphere of existence that is causing frustration, and he reacts by screaming until that frustration is addressed.

We attempt to remedy his angst by offering different music, shows, activities, or remove him from the current surrounding, and it may help or it may not. Many times we’ve gotten him ready to go “Whee!” at the park, per his request, and we arrive and can’t get him out of the car. He absolutely refuses to leave the vehicle and engage at the park. So then we bring him back home and start the process all over again. One thing that does work about 100% of the time is feeding him cookies or cake or sweets of any kind (it’s pretty effective with all of our kids), & although this satisfies him for the moment, it’s not good for him to gorge on cookies all day and that’s when our higher reasoning skills as his caregivers must step in and say no. Luke often wants a lot of things that aren’t good for him – as any child would – playing on his iPad all day, not eating fruits and veggies, trying to walk into the road and so when individuals ask What does he want? it’s a relevant question but sometimes it’s not because Luke doesn’t necessarily know what he needs or wants or may want something that wouldn’t be good for him.

The other day around 7 p.m. Luke’s screaming was relentless. He had eaten a big dinner, taken a long soothing bath, had his juice, was jammied with his iPad in hand, and he just continued to scream. Nothing would make him happy. As you can see from the photo, he often hangs out in this sensory area we created, and his bedroom is inside the smaller door. In the background you’ll notice the safety bed which keeps him secure at night and provides a sense of calm, and you’ll also notice, his bedroom door and bed are wide open for him to access at any point.

This particular night we were finally fed up with trying to determine what was causing his frustration, and in a last ditch effort we gave him his chocolate milk with melatonin, (a ritual since 3 years old), turned on Pandora (which he falls asleep to) and put him to bed – an hour earlier than usual. He didn’t make a peep. All he wanted was to go to bed – with the ritualistic aspect involved – Dad putting him in bed, handing him his milk, turning on his fan, and tucking him in with his blankie – but he, in his limited knowledge and vocabulary, could not instigate this process for himself. He couldn’t and wouldn’t voluntarily lay in bed because that’s not how the process goes in his mind. Dad (or Mom) had to do it.

That’s Luke’s brain to the best of my limited comprehension – his wonderful, miraculous, and unique way of looking at the world. It’s joyful and frustrating and messy and damn near impossible at times, but it’s his reality and ours, and we honor it; accept it; and live with it.

Just keep livin

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.