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 home, we enjoyed the holiday together, Christmas night we feasted on our traditional prime rib dinner, and Luke wouldn’t eat. The next morning, he couldn’t walk.  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 continuous 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.

Three weeks of absolute exhaustion – head down, “get er done” kind of life. 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 then spent every night beside Luke.

When Luke was discharged two weeks ago, I spent the majority of the first week in bed with his baby monitor beside me.  I got up to make food for the kids, do 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 when our first spouses passed away in 2010 as we napped almost daily for over a year – our bodies and minds completely spent.  Trauma affects people in the strangest ways:  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, in an effort to reduce my Advil consumption, I discovered 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 as prey. 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 unassisted 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 can’t be reasoned 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.

 

 

 

A Day in the Life of a Special Needs Caretaker – Questions Answered

A few weeks ago I posted a documentary called Life of Luke which detailed the day in the life of our son Lucas who has special needs or more specifically, it detailed a day in the life of a special need’s caretaker, yours truly.  This short video has received over 900 views on YouTube and has led to insightful discussions and questions in regard to what it’s like raising Luke.  I’ve mentioned before, I LOVE diving into this topic – especially when it’s done in a respectful and life-giving way.  There are difficulties and challenges associated with raising a child like Luke, as there are with any child and there always will be! – but if our challenges can lead to awareness and resources for families like mine, then I’ll continue to write and post about the realities of our life.

This documentary helped open the eyes of many individuals including a few who said, “Jess, I had no idea that you needed special equipment for your child.  It just never crossed my mind.” As these comments and questions poured in, I decided that it would be helpful to answer them on the blog.  Today’s post will address the different types of equipment we have for Luke and how we obtain it.

First, we have used a wonderful company called Independence on Wheels for the majority of our adaptive equipment needs here in Tennessee.  I love working with this company as they come to me, they fill out all of the paper work, and they make the referral calls – which as any parent of a special need’s child knows, is huge.  I think I’ve spent a third of my life filling out paperwork for Luke. No joke.

Our most recent piece of equipment obtained through this company is the car seat. This was a life changer.  When we lived in rural Tennessee, I would drive about 30 minutes to and from Luke’s school.  Luke didn’t enjoy this long car ride and would often scream.  One day, he was bored and figured out how to wiggle his way out of the seat belt and found his way to the front of the van while I was driving! This was disastrous and led to multiple detours of pulling over to the side of the road and trying to wrangle him into his seat belt once again in a way where he couldn’t escape. I called the company, they arrived within the week, and we ordered the car seat which took a couple of months to secure. He can not get out of this – praise Jesus.

We also utilize a stroller/wheelchair for Luke which was absolutely necessary when he was younger, but he’s not real interested in it anymore as his walking continues to improve. It is still a necessary convenience when he needs to be restrained because we can’t walk with him forever despite his insistence for it.

The Rifton activity chair which he doesn’t really associate with activities but more so with food.  We are currently looking for a chair (that doesn’t cost thousands of dollars) that he would keep him safe (so probably a restraint), allow for some independence, and one that he might learn to associate with activities rather than eating. The Rifton chair is manufactured in a similar way as a large high chair. There’s a strap to use if necessary but we haven’t had to utilize it as the tray keeps him in place and he’s happy as the food continues coming his way.

His bed – which in all honestly, looks a little bit like a jail but came highly recommended from the company Independence on Wheels.  This bed has been great as the double doors swing open wide enough for him to come and go as he pleases and can serve as a giant changing table for clothes, shoes, etc. We paid extra for the foam cushions that attached (past tense) all the way around the bed on the inside via Velcro strips – well, that was their original purpose; however, Luke managed to rip them off one morning, and we found him buried beneath the pile. We improvised and ran them along the outside of the bed for additional safety purposes. This bed offers a cozy, compact environment for Luke which he finds comfort in along with an easy clean mattress made out of vinyl.  Again, it is void of sheets, pillows, and extra blankets because Luke will have none of that nonsense.  He will rip them off and throw it out faster than you can put it in there.  I don’t claim to understand all the musings that occur in this child’s brain.

Finally, his braces. He is fitted for a new pair every year or two, and they have assisted greatly in his ability to walk.

That’s it. In the next few weeks I’ll give you a sneak peak into a surprise we’ve been planning and answer the question, “Does Luke Play?” or, maybe I’ll let Luke answer that question with a live demonstration.

Just Keep Livin!

Dream Team Coloring Book – A Dream Come True for One Educator.

It all started when I was an 8th grade literature teacher. I remember pacing near the whiteboard, looking at my teacher’s manual, when I noticed a quote in the book I hadn’t seen before. I wish I knew the quote (and I’ve searched for it many times), but essentially it said this: “How do you know when a society values a person? When you see that person in their children’s literature.”  I remember at the time being so struck by this idea, and how this seemingly simple concept was quite a good litmus test.

Fast-forward six years and I was now a mom to my beautiful four-year-old daughter with profound special needs. My husband and I met Abiella when she was living in Ghana and finalized her adoption a few months before her second birthday. As soon as she turned three she began attending an inclusive preschool. In her classroom, fifty percent of the students had special needs, and fifty percent did not.

On one of her afternoons off from school, I found myself in a familiar scene: my daughter was relaxing on a quilt on our living room floor while I was searching through our baskets of books and toys to grab something she might find entertaining. As I pilfered through our dozens and dozens of options, all of a sudden I was back in my classroom, standing as a teacher in the front of the room, reading that quote. In that moment, it dawned on me that out of the massive number of children’s books, activity books, coloring books, and games in our house- not one had a single picture that represented her or her world. Was it possible that my daughter had never seen herself in a piece of literature?

I began thinking about her other friends at school. Had they seen themselves? What about the young child with a tracheostomy- had he seen himself? What about the young friend with a limb difference- had she seen herself?

I later found that yes, there are pieces of literature out there (thank goodness), that are very often created by other parents facing a similar gap. I decided there could always be more and that I wanted to add to that body of work.

With the help of an illustrator, I began the process of creating an inclusive coloring book. I modeled it off my daughter’s pre-school experience. Among the pages, there are many stories. There are children who use walkers, wheelchairs, braces, splints, and sensory headphones. There are also members of The Dream Team who do not have hair, have limb differences, or breathe with a tracheostomy. I also included a happy hospital scene, as many children with medical challenges often spend quite a bit of time in these environments.  Additionally, you will be introduced to amazing children who do not have a diagnosis or perhaps have a special need that is invisible. All of these children are a part of The Dream Team (Volume 1): A group of kids who love hanging out, living life together, and enjoying the awesome magic of inclusion.

While I certainly couldn’t fit every situation into a 20 page book, I do believe it’s a start. Illustrations range from simple to complex and my hope is that individuals with unique circumstances might see themselves portrayed in a happy, positive way. Lastly, I hope this book offers a place for curious minds to ask questions when they see something that feels unfamiliar. It is certainly a coloring book for everyone.

The Dream Team Coloring Book is a free resource, and since I hit publish two months ago, it has been downloaded nearly 700 times. Many individuals have told me they are also making copies for their classrooms, clinics, family and more. This is incredibly exciting and I absolutely love seeing pictures of young children putting their own touch on these awesome pictures.

The book can be found on my website at www.marysusanmcconnell.com/dreamteamcoloringbook . It can also be uploaded into various devices, allowing individuals (like my daughter) who color with assistive technology to have fun with the pages as well.

This coloring book was a joy to create and it has been an enormous thrill to see it out in the world being enjoyed by families across the globe. Thank you Jess for the opportunity to share the book on your incredible platform.

– Mary Susan

  • Mary Susan McConnell is the host of the popular Mama Bear Podcast, a space she created for fellow women raising children with special needs. As a former middle school teacher, she has her Master’s in Curriculum, Instruction, and Assessment and is currently working on her Doctorate in Special Education. She is also the creator of the inclusive Dream Team Coloring Book, a free resource she developed to provide an opportunity for children with a variety of unique circumstances to see themselves in literature. In her spare time, Mary Susan likes to make pottery in her at-home studio. She resides in Tennessee with her husband, 8 year old daughter, 16 year old dog, and 10 chickens.