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 ❤️

Luke’s Brain

I often struggle to understand or explain Luke’s thought process to others. Luke, my 15 year old primarily non-verbal son with profound special needs. Friends, bystanders or even specialists will inquire about where he is developmentally and that answer is difficult to identify. Luke’s brain doesn’t seem to process like typical brains – whatever a typical brain is – but there is a baseline that we all adhere to and he doesn’t land linearly on it – or near it at all. He tends to land here and there and everywhere. He understands more than he can comprehend & yet there is a process that is uniquely his. I believe at times it’s clear to Luke what he desires, but at other times it’s not, and so he’s not able to articulate exactly what he wants. For instance, when he says Mother Goose this does not mean he wants Mother Goose. It means I don’t like what I’m watching so please change it until I stop screaming which will then be your indication that I’ve made a decision. All he knows is that there is something in his sphere of existence that is causing frustration, and he reacts by screaming until that frustration is addressed.

We attempt to remedy his angst by offering different music, shows, activities, or remove him from the current surrounding, and it may help or it may not. Many times we’ve gotten him ready to go “Whee!” at the park, per his request, and we arrive and can’t get him out of the car. He absolutely refuses to leave the vehicle and engage at the park. So then we bring him back home and start the process all over again. One thing that does work about 100% of the time is feeding him cookies or cake or sweets of any kind (it’s pretty effective with all of our kids), & although this satisfies him for the moment, it’s not good for him to gorge on cookies all day and that’s when our higher reasoning skills as his caregivers must step in and say no. Luke often wants a lot of things that aren’t good for him – as any child would – playing on his iPad all day, not eating fruits and veggies, trying to walk into the road and so when individuals ask What does he want? it’s a relevant question but sometimes it’s not because Luke doesn’t necessarily know what he needs or wants or may want something that wouldn’t be good for him.

The other day around 7 p.m. Luke’s screaming was relentless. He had eaten a big dinner, taken a long soothing bath, had his juice, was jammied with his iPad in hand, and he just continued to scream. Nothing would make him happy. As you can see from the photo, he often hangs out in this sensory area we created, and his bedroom is inside the smaller door. In the background you’ll notice the safety bed which keeps him secure at night and provides a sense of calm, and you’ll also notice, his bedroom door and bed are wide open for him to access at any point.

This particular night we were finally fed up with trying to determine what was causing his frustration, and in a last ditch effort we gave him his chocolate milk with melatonin, (a ritual since 3 years old), turned on Pandora (which he falls asleep to) and put him to bed – an hour earlier than usual. He didn’t make a peep. All he wanted was to go to bed – with the ritualistic aspect involved – Dad putting him in bed, handing him his milk, turning on his fan, and tucking him in with his blankie – but he, in his limited knowledge and vocabulary, could not instigate this process for himself. He couldn’t and wouldn’t voluntarily lay in bed because that’s not how the process goes in his mind. Dad (or Mom) had to do it.

That’s Luke’s brain to the best of my limited comprehension – his wonderful, miraculous, and unique way of looking at the world. It’s joyful and frustrating and messy and damn near impossible at times, but it’s his reality and ours, and we honor it; accept it; and live with it.

Just keep livin

Mom! Don’t Bring Luke!

A few weeks ago, on a particularly warm summer day, Ryan and I announced to our crew –

Kids! You’ve been so helpful lately and did your chores without complaining so we’re going to have a family fun day at a water park!

Kids responded with glee and excitement and Yays! all around and asked –

Who’s going to watch Luke?

We’re going to bring him, we replied.

He’ll enjoy getting out of the house. 

Mom!!!!! NO!!!! bellowed the sounds of despair. We’ll have to leave early if Luke comes!

This is a constant dilemma we face.

We brought him.
He did make it very difficult and tiring.

We did have to leave early because Ryan and I were absolutely beat after a few hours of fun.

We arrived around 11:00 a.m. because this particular event had free food (major bonus with our crew!). We loaded all eight plates full of grub, and then Ryan retreated to the furthest corner of the park, in the shade, to feed Luke so that the stimulation of all of the people didn’t overwhelm either of them and so he wouldn’t try to grab the food off others plates (Luke not Ryan). I picked a table near the food because I knew my tribe was going to take full advantage of the free factor.

Mya took charge of Annabelle as she skitted about, and the rest were free to roam independently. Ryan and I took 20 minute intervals engaging with Luke. A word here – Luke is no longer content to sit. EVER. He has declared a mutiny on his stroller and wants nothing to do with it, but he needs constant supervision and assistance for his and others safety. We took turns introducing him to the parks plethora of activities – 5 slides, numerous water features, an accessible swing, acres of land to explore, lots and lots of hot dogs because he wouldn’t eat the chips or watermelon or popsicles.

About 3 hours later Ryan and I looked at each other and we knew – we were done. Physically, mentally and emotionally, and we also knew our kids wouldn’t be happy about it.

Let’s give them the 30 minute warning

My wise husband suggested.

We did.

The moans of disappointed began –

Luke always makes us leave early! Why can’t we find a babysitter for him? Why can’t you and dad drive separately? (Which maybe we should have but the park was about 45 minutes from our house)

WHY DO WE HAVE TO BRING LUKE? They wailed

And we responded, frustrated as well and exhausted, questioning the excuse we offered-

Because he’s part of our family, and we need to include him occasionally. 

We currently do not have a solution for this problem.

It is what it is.

We do feel the need to include Luke – even at the expense of his siblings happiness, but we understand their frustration as well.

This post is simply to bring awareness; the little things that special needs families struggle with such as decisions that sometimes cause pain for other family members. I do believe that our children will be better human beings in the long run for having Luke in their life as they have patience, flexibility, and independence that other kids may lack. They have also learned compassion and acceptance towards those who might not be just like them – those who might cause a bit of a disruption to their happiness – those like Luke.

 

Just keep livin.

Holy Work

 

“This is holy work,” I begrudgingly reminded myself a day after returning home from a much needed vacation; a week of relaxation, sun, and reconnecting with my husband, and here I was now, again, changing my 14 year old’s diaper, my Lucas boy with profound special needs who was currently on his third bout of diarrhea in a month; so many wipes, diapers, hand washes, and missed school days – #buttwiperforever.
Continue reading “Holy Work”