A Resurrection Only Occurs After A Death.

When Ryan and I met in 2010 we were in a season of death with the passing of our spouses, & this death included a burial of lifelong dreams and expectations.

The next few years we enjoyed a resurrection as our lives merged and birthed new realities: our marriage & family, a simple life in rural America, the birth of a book, a teaching career, a non profit & another child. Lots of growth & beauty.

We now find ourselves back in a season of decay; broken bodies over the past year: Ryan’s, mine, and Luke’s; broken ideals and dreams as we restructure & determine how we’ll proceed, lots of unanswered questions and concerns & the burial of systems that no longer serve us emotionally or spiritually, and we wait because we know. We know because we’ve been here before – this is familiar soil, deep & dark & rich soil where we’ve been planted and now we await our reemergence into the light.

We wait for our resurrection.

And we are confident that it will arrive in due time because that’s how life works.

Everything remains in motion; a continuous movement of death and resurrection, waves upon waves washing away the brokenness and moving what remains to the shore – natural disasters and coronavirus and despair not excluded – it’s all involved, collectively and individually; ashes to beauty and back to ashes again, circular movements until the maestro sweeps his baton for the last time & bows his head in holy reverence, that moment when his beloved creation leans into the finality & releases a labored breath – bursting through the birth canal into an everlasting resurrection.

And until then?

We just keep livin.

WHAT HAPPENS?

I spent an intense morning with Luke at the eye doctor. Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke…

This is life for special needs families.

I made this appointment months ago – before Ryan had committed to his new surgery date in Feb – before when the original date was Jan 6 but then Luke was still in PICU & so we rearranged our schedules.

Today – 8:30 a.m. Feb 25, 2020. 5 days post op for Luke’s father who usually joins me on these exhausting excursions because it’s hard. But Ryan couldn’t join today with his arm in a brace, and I bribed my oldest daughter Mya to help. Bribed her with the promise of Starbucks. She agreed because that’s the kind of person she is. A lover of people and a lover of hot chocolate.

At 15 years old, Luke hates almost everything out of his ordinary – “GO TO SCHOOL!” was heard loud and clear – repeatedly- during our time spent in the serene waiting room added with the ants in his pants which resulted in a loud “GO WALK!” to the cacophony of chaos as mothers quickly shielded their children from his outstretched, unstable movements which threatened to grab or lick or stumble headfirst into their small toddler’s bosom.

What happens?

I asked myself – my blood pressure rising and heart palpitations quickening with each high pitched scream as Mya and I stared at each other with helpless looks as we tried to wrangle our big man child back into his stroller.

What happens when he becomes too big, and I can no longer physically restrain him?

What happens when he can’t go out in public because he might cause harm to another person?

What happens when my mental stability is hinging on instability?

What happens when his iPad isn’t interesting to him anymore?

What happens if he needs a diaper change and there’s nowhere to change him?

We were able to calm his anxious soul today quite by accident. The nurse played classical music from a contraption with green blinking lights (price tag probably $5000) to get an idea of vision capacity. He loved it and relaxed. I asked if we could keep playing the song on repeat for the remainder of the visit. She agreed & patted his knee “it’s ok buddy, it’ll be ok.” She was looking at me.

It’s okay is what happens. Mercy happens. Compassion happens. Occasionally someone really sees us – that’s what happens. Hot chocolate and strong coffee happens.

Moment by moment as we “just keep livin”

That’s what happens.

When the Almighty Flips Your Page – Holding on During Difficult Times

Last night I rummaged through our attic and came across this old calendar from 2010. Flipping through its pages I paused when I arrived at August – August 2010 – the most difficult month of my life, a tumultuous month full of overwhelming obligations and demands: work, Luke’s birthday, family pictures, doctors appointments, four children farmed out on a daily basis to anyone and everyone, the arrival of hospice equipment, nursing staff in and out, important phone calls determining life or death decisions, and ultimately goodbyes whispered and a funeral prepared for a young husband and father.

This morning, eight years later, I bask in the warmth of the Tennessee sun, a beautiful fall day spent watching my rambunctious one year old daughter fill her little, red wagon with dry, autumn leaves as I hang freshly laundered clothing on the line. A day I could not have imagined in my wildest dreams in August of 2010. A day seeping with redemption, warmth, and joy.

The moral of the story? Circumstances can change in an instant. You may currently find yourself in the midst of an unimaginable hell, but hear me with this truth, hold on with every ounce of your being, hold on to him who is greater than he who is in the world, hold on to that last shred of faith in your soul no matter how unraveled or mangled or beat to crap it may seem, HOLD ON for goodness sake and for every other sake in the world for you have absolutely no idea what’s around the bend. You have no idea what may be in store for you when the Almighty flips your page, and you have no idea the blessing he may bestow when you “fight the good fight and finish the race.” You will have your peace again, you will have your joy; you will rise and have the crown of life bestowed upon your weary head, and you will hear those coveted words, “Well done good and faithful servant.” I promise – your faithfulness will win in this life or the next.

Just keep livin!

Why You Should Care About Children with Special Needs

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 http://www.thelucasproject.org to learn more.

 

Just keep livin.