Manna for the Moment

Luke has been back in school for about a week now.

Experts claim that special needs caretakers often experience PTSD, and I particularly notice this tendency when I don’t have him on my radar for an extended period of time.

Every 30 minutes or so, I ignore the sounds around me – the whir of the washing machine, the chattering of my four year old, the constant buzz of lawnmowers outside – I ignore the background noise and selectively pinpoint my hearing to the basement – listening intently for Luke – listening for either a scream of “ALL DONE!” or, lately “WIGGLES!” which really just means I don’t like what I’m doing or watching so please offer 500 additional options, and then I’ll agree to one of them by telling you – “BYE! BYE!” Or I wander aimlessly to my bedroom where I check the 24/7 surveillance monitor, but there are no screams and the image on the screen is empty.

And every couple of hours I find myself in the basement, lost, having forgotten what I came for, but my body can’t forget the summer routine, and I breathe deeply – quickly checking for any indication that there may be a diaper to change but there isn’t. There are only the remains of Luke’s favorites: his iPad – in need of charging before he arrives home and numerous sippy cups scattered about that need cleaning – the only cups he will drink from.

And like clock work, morning, noon, and night I ask myself “What am I going to feed Luke today, and do we have those ingredients?” Due to sensory issues, I often prepare his meals separately, and due to my desire for him to eat healthy food, I will go the extra mile to hide the zucchini and green beans.

This is the process of PTSD for caretakers – always being on, always having our senses at high alert; always being at the beckon call of another. It is a refining process like no other; a constant laying down of our life and our desires for someone who is unable to care for themselves. It is a holy calling; it is an exhaustive undertaking. It takes patience and self care and sometimes righteous anger and unrelenting faith – faith in meaning beyond ourselves for that’s why we do it, right? Why we rise to the calling and fulfill the mundane and monotonous tasks day in and day out.

And somehow, gloriously – miraculously really – as the sun appears, or maybe it doesn’t some days, we are greeted yet again with the gift of time which will bring fresh grace and new mercies served alongside lots of lukewarm coffee as we hurriedly offer a familiar prayer – “Give us this day, our daily bread” – like fresh manna from Heaven – manna for the moment – and that is enough. It has to be enough.

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.

A Birthday Wish for Luke

It’s Luke’s 15th birthday exactly one month from today. August 12, 2004 he came screaming into this world as he was gently lifted from the gaping hole in my belly. I held my breath & desperately prayed that he would defy every odd and please dear God, let him LIVE and he did! Hallelujah! and he not only lived but he thrived and progressed for almost 15 years! Praise Jesus! And as thankful as we are for his life and progression, the simple fact remains that as Luke ages and gets bigger and stronger and goes through puberty with lots of pent up testosterone flowing through his body, his needs have become quite intense, and it’s difficult to keep him satisfied, entertained, and at times, safe.

Continue reading “A Birthday Wish for Luke”

A Day in the Life of a Special Needs Caretaker – Questions Answered

A few weeks ago I posted a documentary called Life of Luke which detailed the day in the life of our son Lucas who has special needs or more specifically, it detailed a day in the life of a special need’s caretaker, yours truly.  This short video has received over 900 views on YouTube and has led to insightful discussions and questions in regard to what it’s like raising Luke.  I’ve mentioned before, I LOVE diving into this topic – especially when it’s done in a respectful and life-giving way.  There are difficulties and challenges associated with raising a child like Luke, as there are with any child and there always will be! – but if our challenges can lead to awareness and resources for families like mine, then I’ll continue to write and post about the realities of our life.

This documentary helped open the eyes of many individuals including a few who said, “Jess, I had no idea that you needed special equipment for your child.  It just never crossed my mind.” As these comments and questions poured in, I decided that it would be helpful to answer them on the blog.  Today’s post will address the different types of equipment we have for Luke and how we obtain it.

First, we have used a wonderful company called Independence on Wheels for the majority of our adaptive equipment needs here in Tennessee.  I love working with this company as they come to me, they fill out all of the paper work, and they make the referral calls – which as any parent of a special need’s child knows, is huge.  I think I’ve spent a third of my life filling out paperwork for Luke. No joke.

Our most recent piece of equipment obtained through this company is the car seat. This was a life changer.  When we lived in rural Tennessee, I would drive about 30 minutes to and from Luke’s school.  Luke didn’t enjoy this long car ride and would often scream.  One day, he was bored and figured out how to wiggle his way out of the seat belt and found his way to the front of the van while I was driving! This was disastrous and led to multiple detours of pulling over to the side of the road and trying to wrangle him into his seat belt once again in a way where he couldn’t escape. I called the company, they arrived within the week, and we ordered the car seat which took a couple of months to secure. He can not get out of this – praise Jesus.

We also utilize a stroller/wheelchair for Luke which was absolutely necessary when he was younger, but he’s not real interested in it anymore as his walking continues to improve. It is still a necessary convenience when he needs to be restrained because we can’t walk with him forever despite his insistence for it.

The Rifton activity chair which he doesn’t really associate with activities but more so with food.  We are currently looking for a chair (that doesn’t cost thousands of dollars) that he would keep him safe (so probably a restraint), allow for some independence, and one that he might learn to associate with activities rather than eating. The Rifton chair is manufactured in a similar way as a large high chair. There’s a strap to use if necessary but we haven’t had to utilize it as the tray keeps him in place and he’s happy as the food continues coming his way.

His bed – which in all honestly, looks a little bit like a jail but came highly recommended from the company Independence on Wheels.  This bed has been great as the double doors swing open wide enough for him to come and go as he pleases and can serve as a giant changing table for clothes, shoes, etc. We paid extra for the foam cushions that attached (past tense) all the way around the bed on the inside via Velcro strips – well, that was their original purpose; however, Luke managed to rip them off one morning, and we found him buried beneath the pile. We improvised and ran them along the outside of the bed for additional safety purposes. This bed offers a cozy, compact environment for Luke which he finds comfort in along with an easy clean mattress made out of vinyl.  Again, it is void of sheets, pillows, and extra blankets because Luke will have none of that nonsense.  He will rip them off and throw it out faster than you can put it in there.  I don’t claim to understand all the musings that occur in this child’s brain.

Finally, his braces. He is fitted for a new pair every year or two, and they have assisted greatly in his ability to walk.

That’s it. In the next few weeks I’ll give you a sneak peak into a surprise we’ve been planning and answer the question, “Does Luke Play?” or, maybe I’ll let Luke answer that question with a live demonstration.

Just Keep Livin!