To the Medical Mama – I See You.

How many times have Ryan and I watched from a distance – mostly online – as a special needs family spent weeks or even months in the hospital with their child, and we said to each other – gosh, that’s gotta be hard. We had a limited understanding of how difficult an ordeal like that could be because Luke has been extremely healthy for many years – healthy until now – our 25th day spent in the hospital.

Now we know how hard it is; we know on a personal level. We’re aware that it involves trying to determine how a non verbal child is feeling or reacting to a particular treatment. It includes stiff muscles from sedation & sleeping on hospital cots & sleep deprivation from vital checks & rounds. It involves depleting the savings account because of days missed at work & stress related problems & nutritional deficiencies because our meal options primarily consist of Taco Bell or Pizza Hut. It’s depression & ptsd & loneliness & marital disconnect & siblings who misbehave because they need attention too and a house that hasn’t been cleaned in a month & rotting fruit & veggies because of absentee parents & piles of laundry & bills & vehicles that require servicing because of extra miles driving back and forth and back and forth, and exhaustion on a level where in your quietest moments you wonder if you might die.

My passion in life is to bring awareness to the struggles special needs families face. It’s why I started The Lucas Project – to bring public awareness to the problem and then provide a solution.

I couldn’t personally speak into the medical mom struggle before this journey because it wasn’t my story, but it is now, and I will lend my voice – honestly and vulnerably to the conversation in order to bring awareness to the silent warriors tucked away – rocking themselves into a disrupted sleep, penning updates for the masses; those hiding behind cords & beeping machines & very sick children.

I see you.

I see you
I see you.
I see you.

Solidarity & peace & love my friends ❤️

See Me Too – A Caregiver’s Plea

Dear mama with normal children,

Normal? Typical?
What’s politically correct you might wonder?
As do I and –
What is normal anyway?
Honestly, I’m not sure because I’m tired.
And I don’t spend my free time on political jargon
And I definitely don’t sleep well
And most of my waking hours I’m caring for someone else
Or finding resources that will hopefully make our life a little bit easier someday.
Someday – a day that feels more and more like a unicorn lately.
You see, I’m a special needs mama to a 15 year old son.
And no, it’s not politically correct to call myself that
Because I am more than just special needs
Or so they say
But am I?
Because a pretty high percentage of my life revolves around my child and what we can or can’t do because of his limitations.
I often see you and your beautiful typical functioning children out and about in the world, and I’m envious.
Yes, I said that out loud.
And I’m not supposed to say those words because I have my miracle baby.
The child the experts said would never live
So there’s always guilt attached
To my envy. Continue reading “See Me Too – A Caregiver’s Plea”

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.