Blessed Are the Meek

August is here – a month drenched in significance and redemption.

A month when Luke was born

And Jason died.

And three of my children said good bye to a mother.

Luke, who was declared terminal at 20 weeks in utero. Luke, who was never supposed to see the light of day & yet defied every odd when he came screaming into this world on August 12, 2004.

Jason, my late husband, a personal trainer and tennis pro- took his last breath on August 24, 2010 & entered the most beautiful light of day when he won his eternal race and accepted the crown of life.

Tate, Mya, and Jada – four days later, August 28, 2010, mourned the loss of their mother – a deep ache that no child should ever have to bear.

Three stories.

Each one intertwined to form a bigger story.

The eternal symbolism is never lost on me.

His strength is made perfect in our weakness.

A strong father who fought for three years – gone.

A young mother full of life and four months later – gone.

A little boy, the meekest of the meek, declared dead and 15 years later, living and thriving and spreading the message of hope with every step he takes.

His ways are never our ways.

“For I am God and you are not” thus sayeth the Lord of Hosts.

Blessed are the meek
And the weak
And the lonely
And those gasping for one more breath
And those with IV’s in their arms
And those swallowing big pills
For even bigger problems
And those seeped in depression
And those on food stamps
And those writhing in addiction
And those who aren’t sure they can make it one more day
Blessed are the single moms
And the dads too
And those crying out for relief
And those living in the shadows
Or those weeping beside a grave
Blessed are all of the Luke’s who came defiantly screaming into this world
With a gigantic F*#% YOU!
PG version –
Of course
And blessed are YOU
And you
And you
And you
The meek of this world
The lost
The forgotten
Blessed are YOU for you shall inherit the earth.

Just keep livin.

We Can Do Better In The Bible Belt.

I recently noticed a woman’s angry post on social media regarding a lack of resources for special needs families – particularly in the South – specifically in Tennessee, and I curiously asked, “What states do provide adequate resources for special needs families?” Her response surprised me, “Any liberal state” and then she followed up with a few examples – “Washington, Vermont, California, and New York.”

Interesting. The Bible Belt, the South where we have a church on every corner and every flavor of religion imaginable, Trump country, the land where we strongly admonish mothers to carry an imperfect baby to term because of our beliefs, this pro-life land flowing with pregnancy resource centers, right to life events, and church bake sales is also known to be one of the worst areas in the country for ongoing resources after you give birth to that child in question.

But the liberals – Bernie and Hillary and that whole progressive bunch – they’d rather eliminate the imperfection that they know will cost oodles of tax payer dollars, but if you choose the difficult, ongoing, stressful path of raising a special needs child, this bunch is sure as hell going to help you out. Time for a change Conservatives. Time for a change Bible Belt. Time for a change America.

I am pro life when it comes to the unborn. I’ve proven this with my own flesh and blood, and it isn’t an argument I’m going to entertain with this post; however, I am suggesting that pro-life must extend beyond a mother’s womb. Pro-life should extend to providing tax dollars and fundraisers for the parents who make the difficult decision to choose life for these children. Pro-life should provide ongoing support for the least of these even as they age and especially as their parents age. Pro-life means not placing these families on waiting lists that never seem to end. Pro-life ideally would provide enough support so that we don’t hear another heartbreaking story about a parent who reached their breaking point with a child who could not be calmed and would not be pacified, and we point our judgmental fingers and gasp, “HOW COULD THEY?!” when that panicked caretaker finds a less than ideal solution. Not as a fetus – nope – but choosing to terminate the situation when it’s no longer socially acceptable.

Special needs families need proactive change and soon. How are these changes going to occur? And who should provide the resources? I’m not an expert, but I am a mom raising a child with profound needs, and I have a few thoughts.

1. Special needs caretakers need to stop sugarcoating the journey because no one will help us if we don’t make our needs known. If all we do is talk about how little Timmy is such a miracle or Betsy is a blessing, WHICH THEY ARE, but not share the rest of the story, we are missing an opportunity.  We do our stories a great disservice if we never discuss the difficulties or how we have panic attacks on a regular basis. The experts compare the anxiety of raising a child with special needs to the PTSD often experienced by war vets.  Yes, it can be that stressful.  These kids often have needs that never, ever end and that becomes very disheartening as a parent. Society can’t read our minds. Our cities and towns don’t “just know.” Our friends and family are incapable of understanding if we don’t tell them. There will always be a few who will ridicule us for our truth or our choices, but we need to plow through anyway. Courage my friends, courage. We need to make the realities known, set aside our “bless your hearts” and dive into authentic truths when it comes to special needs.

2. Awareness. Right in alignment with number one. We need to tell our stories. I have a dream of one day being a part of a documentary that will showcase all different ages, walks of life, and cultures immersed in a special needs journey; detailing the joys, trials, happy moments and the difficulties – detailing it all so that the world can no longer claim ignorance. Wouldn’t that be a wonderful resource for everyone? But, in the meantime, tell your story. Stories are what connect us to one another and allow compassion to emerge which will eventually provide resources and support. There can not be change without empathy.

3. Contact your state representatives – even if you don’t have a special needs child! Do it for someone you know. Beseech these political leaders to pass the bills, find the funding, or whatever else they need to do to help these families. Currently, 1 in 59 children has autism and that’s just autism! These numbers seem to increase every year so if you’re not affected by special needs now, you will be soon.

4. Churches – Christ admonished us to care for the least of these, and this includes the weakest members of our society – those who cannot care for themselves – the special needs population. I realize that not every church can afford a special needs ministry, but every church can afford to lend a hand to special needs family in the community. Generally, what a family needs more than anything is a break – just a few hours for a date night or time alone in the bath or a nap. Every church can provide this invaluable resource for at least one family in the community. It doesn’t take any money – just time and patience. If your church does have money in the budget to implement a special needs ministry, do it! This is about the only way a family can comfortably come to church. Or, if an entire ministry isn’t in the budget consider a week of Vacation Bible School in the summer or on a school break.

5. I can’t speak for every special need’s family, but I have spoken to many of them throughout the years and the responding themes I hear are: exhaustion, despair, loneliness, and concern for the future. Most of these feelings can be remedied through a break. Summer care and school holidays are really difficult because most special needs kids thrive with structure, and when you eliminate structure, these kids are often confused. What does this confusion actually look like? For Luke, it involves head banging and screaming. I sometimes compare the scenario to a colicky baby – except Luke is 14, and he probably won’t outgrow these behaviors any day soon. In fact, I worry that as he goes through puberty it will only become worse. Structure is oftentimes a special needs child’s best friend.

6. The future. This is a biggie. I know I don’t want to take care of Luke forever. I will if I have to, but it wouldn’t be my first choice for him or me. I think he deserves better than hanging out with his old mom and dad until his dying day (or ours), but I don’t know what the options are. Most of what I hear involves a waiting list a mile long or a bank account a mile long. I pray this changes and we have viable options before it really becomes an issue in our life.

We can do better for these families. Please consider sharing this post so that as a culture we can make life just a little bit easier for the least of these and their families.

Just keep livin!

Aldi & Raging Women – Lessons in Grace.

I went to Aldi the other day.

It’s where I do most of our family’s grocery shopping these days since the move. I put my groceries in the car and puttered back to the store to drop off the cart and retrieve my quarter. My head was down, lost in private thoughts as I was happy to be alone for the first time in days due to the freezing temps which had shut down the school system leaving me newly employed as a zookeeper with eight bored monkeys – or so it seemed.

Out of the corner of my eye I noticed an old suburban slowly backing out of a parking space. The vehicle was a tad bit ahead of my lackadaisical strides, and so I began to walk in a wide circle to avoid the oncoming vehicle. I managed to move in time and allowed for plenty of space between the two of us, or so I thought, when out of the blue I heard –

“HEY!

Not that I was backing up or anything BITCH!”

I looked up shocked. An older, morbidly obese woman was staring at me from the driver’s seat and shaking her head in disgust. She was livid. I felt my blood pressure quickly rise and my heart begin to beat hysterically as I stared back equally as livid. I never let my gaze leave hers as I marched the cart back to the dock. I was fuming mad. If I wasn’t a woman of faith, and if I didn’t have 8 children who looked to me as an example, and if I were in an Roman arena with this woman centuries ago, it would have been a different story altogether. For Sure. But here I was, in an Aldi’s parking lot, and just as these thoughts angrily caressed my mind and began to scootch Jesus right out of my heart, she screeched off before I could give her a good solid piece of my mind.

“What is going on with people nowadays?! Where is all this rage stemming from?!”
I thought as I began to employ deep slow breaths to regain my composure and then a memory flashed – a memory from only the night before, a memory which involved me not so gracefully chewing my husband’s head off for something so insignificant when viewed through the lens of time – the lens of only 24 hours later.

And another memory from the previous long day, a bored 14 year old special needs child screaming almost nonstop “Shoes! Go to school! Shoes!” because he could not comprehend nor understand why his schedule had been interrupted by cold weather and a few choice four letter words forming in his mother’s mind as she attempted to soothe him yet again.

I was no different.

Absolutely no different from the raging woman who called me the B word, and in fact, I may be worse. She was raging at strangers while I had raged at those I claimed to love; children I had birthed and a man I had chosen to do life beside. I was her and she was me, and we were both the sum of sinful humanity.

Exactly the same.

Both in need of grace. The Almighty’s and one another’s.

This revelation caused me to pause; to wonder and to ask –

“Why was she so mad?”

Had someone died? Did she lose her job? Did her husband recently receive a terminal diagnosis? Did her husband leave her for another woman? Had to be her husband’s fault – just kidding… but I’ll never know what had caused her rage.

But empathy. And Compassion. And second chances. And a new lens which included seeing myself in her. Seeing all of ourselves in the vastness of humanity even those whose political temperaments may not align with ours or those anti vaxxers or pro-lifers or wall haters.

“And the second greatest commandment is this, to love thy neighbor as thyself” – all of our neighbors, including those we live with and gave birth to. Extending grace. Extending love.

Just keep livin

The Cloud is Moving – Courage in the Midst of Change.

It oftentimes takes courage to say that something isn’t working anymore, and truthfully, it hasn’t worked for some time for us.

A little over five years ago our family left Michigan for a dream that included a simple life in rural Tennessee. This is how Ryan and I operate – we hear “GO!”, and we go. We married quickly, Ryan moved to Michigan within months of proposing, and we moved to Tennessee after seeing our current house once. We are decisive, informed, and not prone to obsessing much about how our decisions will be perceived by others outside of our immediate family. To reference a Biblical metaphor, we move with the cloud. Continue reading “The Cloud is Moving – Courage in the Midst of Change.”