A Virus Manifesto – What this hot mess may be telling us about ourselves.

This Halloween picture we took a few years ago feels more & more like reality lately. The end of the world, every man for himself, protect you and yours, Armageddon.

Ryan & I thrive off a “live off the land” ideology – it makes us a bit giddy – making bread & soap & homemade wine & growing food. It’s why we lived in rural TN for 6 years. But – there is an unsettling fear when this lifestyle is forced upon us by the threat of a virus. Maybe the fear has been manufactured by the media or perhaps by our internal desire to survive at all cost but what I’ve found interesting is this – along with the fear is a bubbling of anticipation.

I’ve tentatively posed this question to a few people – barely whispering

“Do you feel it too? The tingle of expectancy?”

Afraid that maybe I was the only one who felt the silver lining, but I wasn’t. There was agreement – yes, there is a sliver of anticipation attached to the anxiety and fear.

And why? What are these emotions telling us?

I believe these feelings are screaming out our desperation. Desperate to return to the basics. Desperate for our lives to have meaning; desperate to defend our loved ones in the face of danger; to act valiently & courageously & have someone come through for us – that’s why books like The Road and Grapes of Wrath are world wide best sellers and movies like Armageddon and End of Days sell out at the box office and The Walking Dead is on its 10th season – we are achingly desperate to have something replace the never ending scrolling & online shopping & google searches & accumulating & acquiring & rushing, and, and, and…. & we detest our habits, but our addictions hold us firmly tethered to their poison & now we see this world wide catastrophe – everything everywhere shutting down & we’re being forced into our homes with our loved ones – like cattle forced to the feed lot – & we see it as an opportunity, a glimpse, of maybe stering our lives back on track & that’s exciting.

We are so ready to defend our children against illness rather than against online bullies and pornography which seems like a battle we can not win. We are so ready to have meaningful conversations with our teenagers because we’re actually home for more than 5 minutes. We’re so ready to protect our loved ones within the safe confines of home & we’re so ready to make meals together & gather for family games & educate our children & kick the ball on the front lawn. We’re so ready to have time again.

Our hearts are screaming to slow down, but we have no idea how to make it happen and this – THIS may be our ticket out of the craziness we call life.

Go home.
Exhale.
Stop scrolling.

Practice gratefulness & contentedness & patience & self control – manna for the moment – values buried in the madness of modern life. Be still & silent. Teach your children these long lost arts: reading & baking & looking one another in the eyes as we speak.

Do what matters. Be in life fully with those you love.

Whether this madness pans out to Armageddon or fizzles in a few weeks, let’s examine our lives. The busyness, the constant stress, the depression. What is our heart aching for in these troubled times. Family? Peace? Joy? Follow that thread as we collectively hunker down. Not detracting from the hardships many are enduring but perhaps these might be self induced & aren’t really serving us to begin with.

Myself included.

Just keep livin

WHAT HAPPENS?

I spent an intense morning with Luke at the eye doctor. Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke…

This is life for special needs families.

I made this appointment months ago – before Ryan had committed to his new surgery date in Feb – before when the original date was Jan 6 but then Luke was still in PICU & so we rearranged our schedules.

Today – 8:30 a.m. Feb 25, 2020. 5 days post op for Luke’s father who usually joins me on these exhausting excursions because it’s hard. But Ryan couldn’t join today with his arm in a brace, and I bribed my oldest daughter Mya to help. Bribed her with the promise of Starbucks. She agreed because that’s the kind of person she is. A lover of people and a lover of hot chocolate.

At 15 years old, Luke hates almost everything out of his ordinary – “GO TO SCHOOL!” was heard loud and clear – repeatedly- during our time spent in the serene waiting room added with the ants in his pants which resulted in a loud “GO WALK!” to the cacophony of chaos as mothers quickly shielded their children from his outstretched, unstable movements which threatened to grab or lick or stumble headfirst into their small toddler’s bosom.

What happens?

I asked myself – my blood pressure rising and heart palpitations quickening with each high pitched scream as Mya and I stared at each other with helpless looks as we tried to wrangle our big man child back into his stroller.

What happens when he becomes too big, and I can no longer physically restrain him?

What happens when he can’t go out in public because he might cause harm to another person?

What happens when my mental stability is hinging on instability?

What happens when his iPad isn’t interesting to him anymore?

What happens if he needs a diaper change and there’s nowhere to change him?

We were able to calm his anxious soul today quite by accident. The nurse played classical music from a contraption with green blinking lights (price tag probably $5000) to get an idea of vision capacity. He loved it and relaxed. I asked if we could keep playing the song on repeat for the remainder of the visit. She agreed & patted his knee “it’s ok buddy, it’ll be ok.” She was looking at me.

It’s okay is what happens. Mercy happens. Compassion happens. Occasionally someone really sees us – that’s what happens. Hot chocolate and strong coffee happens.

Moment by moment as we “just keep livin”

That’s what happens.

A Glimpse – I Choose Hard.

“You and Ryan seem so calm”

A phrase I often heard when Luke was in PICU for almost 4 weeks this past December and into January.  We probably appeared calm because we’ve experienced the worst case scenario. Someone died on our watch in 2010. We’ve waded through the depths of hell and survived; not only survived, but found immense joy on the other side of our grief but that’s not the only reason.

What most people can’t understand is how difficult normal Luke is at 15 years old. Baseline Luke is hard. The restlessness, constant high-pitched screams, puberty, incontinence, the inability to verbalize what he wants or even understand what he desires makes it exhausting to raise this unique individual, but we do it. We go through the motions and thank God for giving us a child who has taught us numerous lessons through his fragile life. But it’s still hard.

As Luke lay quietly sedated in PICU, I was given a glimpse, A glimpse much like Nicholas Cage experienced in the beloved movie, Family Man. A 25 day glimpse of a different life.  Not a life in ICU with beeping machines and lifesaving equipment; instead, a life at home; away from the beeping machines; a life I returned to after Ryan relieved me at the hospital; a life with the other kids. A life where I awoke to the rising of the sun and not to my 15 year old screaming over the baby monitor. A life where I had the freedom to run to the grocery store for milk and not worry about who would stay with Luke; a life where I didn’t have to constantly decipher what my non-verbal child wanted, and a life void of diapers and wheel chairs and walls smeared with food from wherever he ate his last meal.

An easier life. A life of peace or more peace than I was used to. A life of occasional silence. A life without Luke.

Struggle has a way of forcing beauty to the surface. The pink cactus, planted in a dry parched land – sinking its roots deeply into the brittle soil; willing its way to the surface – beyond the menacing thorns the bright pink petals unfold in majestic glory as the soul reaches for the sun.

The hard, holy treasures of life. Dull glittering nuggets that contain what really matters – unearthed through trauma and agonizing moans and breaths that can’t be released and heartache that brings a mama to her knees as she begs God to intervene and heal her son.

I wrestled with the Almighty for days as Luke lay in ICU. Weeping, moaning, begging – my thoughts scary, laced with guilt There’s peace, it’s quiet; my heart isn’t racing, I slept all night…

In the garden, beside the cords and tubes and beeping machines, sweat dripping from my brow, pleading –

Father, grant me the strength to endure the hard, screaming, physically, emotionally, and spiritually draining cup you have asked of me to drink.  Please spare my son. I choose him. I choose the difficult path you have called of me.  I choose life. Give me grace and strength to walk the road. Crucify every desire for prideful control. May I serve the least of these in your kingdom, and may I serve them joyfully.  Yet not my will, but yours be done. Luke 22

This is my road, my journey, and this is the way I must walk. I choose the narrow, parched path where only the pink petals bloom; the path lined with thorns and littered with dull and dirty nuggets – nuggets masking a priceless treasure beneath the smut and the grim and the walls smeared with food. I choose hard and holy.  I choose Luke again and again and again.

Just keep livin.

 

 

 

 

Simple Ways to Support Special Needs Caregivers

Anger, guilt, anxiety, depression, stress and exhaustion. Pick a word – special needs caregivers experience it. Not seasonally nor occasionally but daily.  I do with 8 kids; one, my 15 year old son Lucas who has profound special needs which include limited mobility, speech, and incontinence. I’m not sure I know how to relax anymore or even dare try to because the second I sit down and finally exhale there will be another task beckoning – probably immediately – and I’ve discovered that it’s more difficult to rebound out of relaxation mode than to simply continue, head down, in stressed out mode.

We could all use a helping hand – a friend or a stranger who gives us a tiny boost of encouragement when we need it the most. Consider the caregivers in your life and then offer to help in a tangible way. Perhaps one of the following simple suggestions might lift their burden a bit.

1. We are lonely and as we crawl deeper into our loneliness we often struggle with anxiety and depression. Many times we are excluded from gatherings because of the special needs factor or we decline an invitation because the excursion will be difficult in our unique circumstances. We know it will be overwhelmingly exhausting if we show up so we save our limited supplies of energy for our families, but we do long for community. If we invite you over, please come! And please offer to bring something. We are desperate for human companionship and really want to make friends but excuse our initial awkwardness. For most of us it’s probably been awhile since we’ve had the opportunity to use our social skills.

2. Offer to watch our kids for a few hours so we can take a break -even the scary kid. Sorry, bad joke but I get it! Luke would be intimidating if I didn’t know him. Ask questions. A lot of these kids have really simple familiar routines, and if you stick to the routine, they’re content.

3. Sit with us and let us vent. Don’t try to fix our problems or understand or pray it away. Just listen and empathize – which is not offering solutions but looks more like “I’m so sorry, how can I help?”

4. Exhaustion is part of life as a caregiver. All the little extras that people do are greatly appreciated because we we are being seen. We feel invisible the majority of the time. Stop by with pizza or dinner or gather a crew from church to clean our house or accomplish yard work. We will be so grateful.

5. If we have other kids, and most of us do, we LOVE for them to enjoy all the fun normal activities such as: football games, sleepovers, birthday parties, dodge ball games at church, bowling, and the list could go on and on. We want these activities for our kids, but it’s often difficult to get our typical kids to and fro with our special needs situation. It takes a lot of extra work to bring Luke anywhere and with his sensory issues most of these fun options are not practical. We are okay(ish) with staying home with our child, but we don’t want our other kids to constantly miss out. Please offer to take them and bring them home if possible. This is a huge help in our life and leaves us feeling a little less guilty.

6. Encourage your church or any tribe you belong to in the community to step in and support these families. A few examples include: a week long summer respite camp, a special day of VBS, a monthly break to serve the community, or a love offering to purchase a family some needed equipment for their child. The possibilities are endless.

7. Finally, if you’re going to offer to pray (or bless my heart in the South) please offer to DO. Prayers have little value if not followed up with something tangible.

That’s it.  I hope these suggestions helped a little bit.  Knowledge is power and when we know we do better.

Just keep livin!