I Know.

As a caregiver to a child with intense and profound special needs, I know that my voice is relevant in this space because of my experiences.

I know that I sigh deeply when people who have no experience with autism offer suggestions on behavior modification.

I know that I want to throttle well meaning folks when they say to “hire help” when there is very little help to be hired or the available help comes at a hefty price tag that a family of ten can not easily afford.

I know that I want to scream when people suggest that we “take him with us – he’ll be fine” knowing he won’t be fine and will instead holler “ALL DONE!” until we agree to leave.

I know that it broke my heart as we tried different medications to thwart the aggressive behavior that resulted after the abrupt ending to Luke’s school year.

I know that it drives me bonkers when my experience with Luke is compared to raising a toddler. No, it’s not the same. A two year old kicking and screaming – kind of cute. A fifteen year old violently thrashing and screaming, not so cute.

I know that my heart often races as passive guilt is heaped upon my already heavy shoulders when we decline an invitation because of finances or weariness or just plain lack of giddy up.

I know that the gossip whispered about time spent away from my children – frequent getaways in order to be a somewhat sane mother who is able to do this exhausting endeavor day after day, hurts.

I know that I could weep every time I think about Luke’s future, my future, – fearful of what opportunities or resources await or don’t await us after 18.

I know what it’s like to be a caregiver of a teenage son with profound and complex and difficult needs. I know that my voice matters. My vulnerability matters. My experience matters as I speak into this space.

I hope and pray that my voice will be a part of many voices that will create change that is desperately needed in America.

However –

I do not know what it’s like to be black and so I will quiet my voice, quiet my judgmental thoughts, quiet my preconceived ideas and opinions, and I will listen. I will listen to the voices of wisdom who can teach me. I will listen to their experiences and their stories, and I will learn.

This I know.

To learn more about how you can help caregivers please visit www.thelucasproject.org

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.

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!