Luke Update – Caring for Special Needs After ICU

Today marks two weeks since Luke came home after being in the hospital for nearly a month.

To Recap – 

Luke had a shunt placed at 3 days old, and it became infected when he was one.  He had surgery and proceeded to be problem free for 14 years.  A miracle, really, until this past December when he got off the bus one Friday afternoon and couldn’t walk.  Literally sat down in the middle of the road.  Ryan and I reasoned that the symptom was attributed with the discomfort of his new braces; however, that night he wouldn’t eat and the next morning he wouldn’t either.  Luke ALWAYS eats. We brought him to ER where it was discovered that his shunt was broken.  He underwent surgery a few days later, was discharged, and we came home after a week; thankful that everything in our chaotic life was somewhat in order again.

Luke appeared to rebound quickly: walking again, eating, and singing so instead of canceling my speaking engagements, I headed to Michigan the following week and shared my story and encouraged communities to help special needs families.

I arrived back home, we had a wonderful holiday together, Christmas night we enjoyed our traditional prime rib dinner, and Luke wouldn’t eat again. The next morning, he couldn’t walk again.  We returned to ER where it was discovered that his new shunt was infected.  This was an “OH GOD!” moment because the revelation entailed a much more intense surgery and recovery period to first remove the infected shunt, strong sedation to ensure that Luke wouldn’t mess with anything, strong antibiotics to clear the infection out of his body, and then another surgery to place a new – hopefully infection free – shunt back in.

Then there was three weeks of absolute exhaustion – head down, “get er done” kind of life –  as Mya and I managed the fort at home, I visited Luke during the days, Ryan worked when he could because we did have bills to pay, and he spent every night beside Luke.

When Luke was finally discharged two weeks ago, I spent most of the first week in bed with his baby monitor beside me.  I would get up to make food for the kids, throw in a load of laundry, and check email, but I primarily binged on Netflix and good books like The Body Keeps the Score and Small Fry (links below).  The trauma had finally caught up with me.  Ryan continued to move, slowly, but never felt rested or quite right.  We still don’t – really.  We’re so damn tired.  We compare it to the aftermath of when our first spouses passed away in 2010 when we napped almost daily for over a year – our bodies and minds completely spent.  Trauma affects people in the strangest ways: for me, all I want to do is sleep, my joints ache – hips, knees, legs – bound so tight from stress, so tightly I’ve been moving like I’m 80 not 42.  About a week ago, concerned about my Advil consumption, I discovered instead a natural combination of Gaba, willow bark (2 for natural pain relief), Tumeric (4-6 for inflammation) and magnesium calm (2 at night for sleep) that has been a very effective nighttime cocktail, and I dance a lot with the kids – shaking off the stress like a wild animal after being pursued. I haven’t been able to convince Ryan to join our dance parties – not yet, at least 😊 I’ve tried to take really good care of myself and go slowly – difficult for a type A, Enneagram 1 who thrives on changing the world, but right now, my focus has been on changing me so that I can function for my world – my husband and kids.

Luke is getting there.  He had a week remaining of detox meds when we arrived home so he’s been drug free for a week now; however, we still notice occasional tremors. He’s resting most days in his bed with music or his Ipad, he’s eating really well – back to normal – and his walking is improving daily but could take a while to be back to baseline.  Today he walked by himself to his chair – which is huge! During surgery the doctor had to remove the infected tube that ran from his head down to the base of his abdomen – a tube which had been there for 14 years – so yes, his core strength has been greatly compromised. The doctor informed us that we’ll be much more in the clear (infection wise) at the 6 week marker.  Honestly, I don’t think I’ll even begin to exhale until we reach 6 weeks.  Hope feels very fickle right now, and I’m not trusting it at all. I know I have to let some of these walls of protection fall, but it is hard. We’ve done everything we can possibly do as Luke’s parents – hydrogen peroxide on his wounds, feeding him healthy foods full of hidden nutrition, Vit D drops, Vit C, Gaba to keep him calm, magnesium to help him sleep, washing his blankie and bed constantly, we’ve done it all but at the end of the day, this is a child with profound special needs who we can’t reason with, and if he’s interested in playing with his wounds with his grimy fingers (he also puts his fingers in his mouth all the time) he’s going to do it.  Every meal, as he sits in his feeding chair, I look at the scar on his head and envision tiny little angels scrubbing away all the germs with tiny little sponges, and I pray, protect my boy from infection and protect our family from any more trauma and then I say –

“But you are God, and I am not.  Thy will be done.”

Thank you for checking in on us. Links for any of the products I mentioned are below.

(Jess Ronne is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.)

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Just keep livin.

 

 

 

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”

Gathering

The past couple of months there has been a lack of peace in my home, and I often thought, this mothering gig really isn’t my thing anymore. 4 teenagers, one with profound special needs, a pre teen, a 10 year old, a 9 year old, and a four year old who has no lack of confidence. It was a lot. Between health and job and hormonal issues which led to emotional issues and arguing and backtalk and snarkiness and bad attitudes and the older kids teaching the younger kids things they had no business knowing; the whole thing was a big honkin cup that overfloweth… or perhaps, it was more like a kitchen sink or the bathtub spilling over & it was causing significant damage. And we – the parents – should have immediately steered the ship back on course, but instead we bickered & bitched & complained as we held on for dear life to the raft boat the kids threw us when they made us walk the plank.

This sudden change in the family dynamic was attributed to a few circumstances: one, everyone was getting older and hormonal and becoming more opinionated & two, our move to an urban community where the kids had opportunities for activities, sleepovers, and jobs and the focus slowly shifted from the family unit – a strong unit we had in rural America where we relied heavily on each other because it was all we had – to individualized focus “You take care of you, and I’ll take care of me” & as long as the older crew took ownership of themselves: jobs, food, school, homework, play – we didn’t question much. We reasoned it was simply a stressful time in our life and “this too shall pass” and then…

Then, a few weeks ago, I said to my husband “I really miss family dinners.” You see, with the introduction of jobs and late nights and neighborhood kids to play with and everyone fending for themselves, and in turn each individual grabbing a bite to eat here and there, dinner time as a family had become almost obsolete – the rare exception in our family since our conception in 2011. For 8 years, we have religiously sat down at the dinner table and enjoyed a meal together – religiously until the move this past December. When Ryan and I married, we knew this tradition would provide a foundation to our success as a blended family – the art of gathering around a table for a home cooked meal and offering a blessing for not only the food we were about to eat but also for his faithfulness through our lives. We knew that the table would provide the foundation for community and connectedness in our newly blended home and the absence of the table would only leave a void and disconnect.

We recently reincorporated family dinner night. It looks a little different than it did in rural America, and we eat later – around 6 now because of play time with the neighborhood kids. We’ve made it a requirement for any child who is home that evening, and my oh my, what a difference we’ve seen already. Attitudes have changed and lightened as we laugh around the table partaking in fresh pasta and warm bread. I like my kids again & I think they might like me too as the focus has shifted, and we get to know each other on a heart level – on a real level- rather than just co-existing.

There is so much chatter in the world today about how lonely we all are, how depressed and isolated and longing for community, and this is not only true for ourselves as adults, but it’s desperately true for our kids. Our homes need to be safe places of respect & connections and what better way to foster these desperately needed essentials than around a table? What better way to encourage conversations? And what better way to show love than to invest our time, our most precious commodity, in them? Give it a try. You won’t regret it ❤

Just keep livin.

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