The Caregiver

 

 

 

 

 

 

 

The spider glides across the window pane
The beetle traverses the cold tile
The moth returns to the light
And the mama releases a sigh,
Weary after consoling her child
Again.

She exhales the attempts
To extinguish the flames
That rage within
The neurotic chaos soothed
By anti-psychotic meds
Or Barney’s songs
Or maybe there is no solution
On this particular day.

No solution for what
The blast stole from him
The stroke that occurred
Many, many years ago
And pained those
Who love him.

And the screams rattle the walls
And the windows
And the beetle cowers behind the urn
Which illuminates a translucent prism
Of relaxed bodies
that lean into the silky softness
or slowly cascade from the glow
and drift to lie
upon the patio.

She stretches her tired limbs
The mama who loved him from the start
Her terminal boy who defied every odd
And lived
But in living
Her dreams died a little bit
And she became frantic –
Fighting against the web
And against the light that beckoned
Desperate for an escape
Desperate to find a crack in the floor
Or maybe in the windowpane
Desperate to avoid the patio graveyard
And reject the silken suffocation
And she retreated
to the mat
upon the floor
again.

The spider, the beetle, the moth –
Her friends in isolation
They wait
All three – they wait
And ponder
And shrug.

They consider their Job
Lying still and silent before them
Prostrate upon the cold tile
Seeking the light within
and not the one flickering
beyond the window pane.

The spider eyes her suspiciously
The beetle hurries past her motionless body
The moth flaps mightily
Her friends in quiet contemplation
Living a life not chosen
But yet, it was.
In childlike surrender
The light glimmers within
and beyond.

The spider, the beetle, the moth
They surround her
And peer intently into her dismal eyes
Her hallowed gaze
And they wait
All four, they wait
For escape.

An eerie silence fills the room
Except for the occasional screams
From the child
below.
She sighs,
defeated,
Again.

And then –

A sound –

She untangles her weary body
Her foot swipes the web
as she rises from the sunken mat
and scuttles to the door
flinging it wide
in welcome relief
The light rushes in
And becomes one with the day
Redemption
has arrived!

Hallelujah and Amen!

The fresh air
Ebbs and flows
Like a steady tango
And brings hope
That brushes away
The spider, the beetle,
and the moth.

A burden lifted
Her soul is light and free
A meal, a drink, a gift
Extended
Life-giving sustenance
for the weary and famished.

She exhales
Slow and steady
Not caught
Nor trapped
By light nor silk nor walls
There is grace
Through giving hands
And sacrifice.

She is renewed.
She is seen.
Again.

#seemetoo

Luke’s Uncertain Future.

Yesterday I enjoyed a lovely conversation with a mama of a 20 year old total care daughter. As we chatted, I was quickly reminded that my Luke will be turning 17 this summer & as of yet, we don’t have a long term plan. Sure, I have aspirations & dreams but nothing cemented in stone.
So instead of being a sane individual & prepping for a move, or writing a book I’m under contract for, or launching a current book (or non-profit work or being present for my 8 children), I spent the day obsessively researching how to become a Medicaid provider & start a residential facility.

Of course I did.

I looked at vacant land, at huge pole barn kits that could be sectioned off into living quarters, duplexes, cheap commercial properties that my handy husband could renovate, & then I began to crunch numbers which only resulted in disappointing results. It’s a HEFTY price tag to have your loved one cared for 24/7 (try $20,000+ a month for ONE caregiver).
My point is this. As many of you prepare to launch your high school graduates off; full of anticipation & hope over a world of possibilities (& I’m doing this as well with my two oldest), there are those of us freaking out about the future of our unique kiddos.

In fact, I believe most of my grief with Luke has nothing to do with his diagnosis but much more to do with the uncertainty of his future & ours. If someone would say to me, “ At 22 years old he will move into this amazing residential facility where he will be well loved & cared for.” That would work! But no one says this to parents like me. We don’t hold our breath for admittance to college at 18 years old. We don’t hold our breath for admittance to anything!

No, we hold our breath that there will be an opening somewhere that provides peace to our souls before our child turns 40 or before we die. Whatever comes first.
We live for years in fear over what the future holds for us & for our children & me being me, I’m sick of the fear & in true Jessica fashion decided to take the bull by the horns & try to control the situation (which may or may not work – we shall see).

It is what it is.

But please, remember us.

In the middle of the big hoopla’s & parties & ceremonies to celebrate the typical ones, remember those of us who aren’t in a major celebratory mood or have much whoop de do going on because there aren’t any options for our grown kiddos.

And you know what, then do something for families like ours. As we show up to celebrate your kids, advocate for our children. Vote for change. Donate to the organizations making a difference in your community. Our societies are only as healthy as our caregivers and that includes caregivers of the typical & caregivers of those like Luke.

Just keep livin.

A Pandemic Halloween.

I know, I know, there are a bunch of disappointed kids this year because many neighborhoods are deciding to not engage in trick or treating festivities. I get it, I feel bad too! Halloween has always been a really fun time for our family, and in previous years, we’ve enjoyed getting dressed up and creating lots of family memories like these.

BEST EVER.


However, as one neighborhood after another decided to forgo trick or treating this year, I suggested an alternative, a patio party for our family.

And – Lo & Behold, they are excited!

Patio party, here we come!

If you are facing a similar crisis with your crew, I thought I’d let you in on what we’re doing and maybe you might consider a similar option (costumes not included).

First, a pumpkin pinata, of course! I bought this one on Amazon for $25.99.  Get it here.

We’re obviously going to fill it with candy and beat it to smithereens until the goods come spilling out.

SLIME! I found a heck of a prime deal on this slime kit and the intention was to save it for Christmas but then I thought, hmmmm, slime and Halloween, they go together, and bonus, let’s keep the mess on the patio, right? Kids will have a blast. Get Yours. 

 

We have three games we’re going to play and each one will offer a prize–

1. Corn Hole. Love this inexpensive kit on Amazon. Get it here. 


2. Giant Jenga. We received this a few years ago and it has brought lots of fun to our family. Buy yours. 

3. Fishing! We’re going to fill up a big pail with water and let the kids go fishing! Annabelle will LOVE it. Get it here. 

Our party will also include lots of Little Ceasars pizzas, a mildly scary movie like Casper the friendly ghost on our outdoor patio screen – we have gotten SO much use out of this –  hot apple cider and popcorn.

 

BUY MOVIE SCREEN HERE – This makes an AWESOME family Christmas gift (that’s what we did last year).

That’s it!  Chime in and let me know what you’re doing for Halloween during these unprecedented times.

And, join me on Instagram for all the fun!

 

 

(This post has affiliate links)

PRIME DAY DEALS AND STEALS!

Who’s taking full advantage of Prime Day?! This girl sure is! I know, ridiculous photo.  It looks like I’m shooting myself but whatever… I don’t have time to take 500 selfies.

Here are a few of the great deals I’ve found so far, and yes, totally Christmas shopping. I’ve already pulled the trigger on most of these!

What are y’all finding? Link up the good deals in the comments below, and let’s go shopping!

1. LifeStraw Personal Water Filter for Hiking, Camping, Travel, and Emergency Preparedness – Regularly $20, now only $9.99 for clean water anywhere. I bought a few of these.

Get yours. 

 

2. Echo Show 5 Charcoal with Blink Mini Indoor Smart Security Camera, 1080 HD with Motion Detection Normal Price $125, now $49.95! Awesome deal for peace of mind. This is headed straight to Luke’s room where I hope and pray it enables him to have more independence and security.

Buy Here. 

 

3. IPad Mini I am admittedly going back and forth about treating myself to this. I currently have one, an older model and I LOVE it. It’s compact, much easier to lug around in my purse than a full size Ipad, and literally is my life line. Everything I write and do is on this baby. Seriously at this price, I should buy two. From $400 to $335.

Great deal here.

 

4. Super cute down coat that I love and sometimes you just buy super cute things that you love. Down from 46.77 to 36.48 after you enter the code UZ2ZSHOW.

BUY NOW. 

 

5. I don’t know about you guys, but my girls love scrunchies (and so do I!). These are going to make great stocking stuffers. 60 Pcs Premium Velvet Hair Scrunchies Hair Bands for Women or Girls Hair Accessories with Gift Bag, Great Gift for Holiday Seasons. Normally $17.99 now $7.99!

Get yours. 

 

6. Ryan and I found the cutest vintage dresser for Jada and Annabelle last weekend, but in using it we had to remove their bookshelf because the room is too small to hold both. Thankfully these Floating Shelves will be the perfect replacement. Regular price $19.00, now $12.47!

BUY HERE. 

7. Perfect snack holder for my teenage boys in their dungeon (basement). I’m SO over picking up all of the empty containers of peanuts and chips. Normal Price $48.99 now only $28.73.

BUY NOW. 

 

8. My kids are obsessed with slime and if I’m honest, I don’t allow it in the house because we’ve had too many problems in the past but at this price on this DIY slime kit, I will allow it on the patio. At originally $60, it’s now a steal at 15.17 with a 20% off coupon at checkout.

Purchase Now. 

 

9. Josh and Jada are obsessed with LEGOS and this Advent Calendar is super cute – especially with the holidays arriving. Regular price $30.00, now only $19.97.

Get Yours 

10. We have a Roku and we love it! At this price I bought two more. Normally $40, now $27.

Buy Here. 

 

11. Play-Doh Gingerbread House. Cutest thing ever and Annabelle will love it (and it’s sugar free!) $9.99

Get Yours. 

 

12. iCOVER Sun Shade Sail perfect for a patio area that I’d love to utilize more but don’t because of the sun beating down. $21.75

Buy Now. 

 

Ta Da! Shop my look.

I’ve detailed my issues with hair loss in a recent blog post which can be  read here but as my hair grows back I’ve found that I really like to use hair pieces in small (believable) amounts like this one from Amazon for $8.49.  Can’t get any easier than this thing. Purchase here 

 

 

I am also wearing another new favorite, magnetic lashes.  I’m not a glamour girl, but if I want to amp it up a notch, these are my go to.  I’m also not one to spend a lot of time trying to figure out weird products (I gave up on lashes years ago!) but these couldn’t be easier to apply. Swipe the magnetic liner on and slap the eyelash on, and I’m good to go. Regular price$ 24.98. Prime day price $19.23.  Buy Here

 

AND FINALLY – to polish off my 5 minute look are these earrings that are awesome and come in a package of 14. If you don’t want a particular color, give it to your best friend.  You can’t go wrong at $16.99 – that’s like $1 a pair. Get Em.  

That’s it!  Let me know what you’re finding!

Just Keep Livin!

 

 

(affiliates used in this post).