Manna for the Moment

Luke has been back in school for about a week now.

Experts claim that special needs caretakers often experience PTSD, and I particularly notice this tendency when I don’t have him on my radar for an extended period of time.

Every 30 minutes or so, I ignore the sounds around me – the whir of the washing machine, the chattering of my four year old, the constant buzz of lawnmowers outside – I ignore the background noise and selectively pinpoint my hearing to the basement – listening intently for Luke – listening for either a scream of “ALL DONE!” or, lately “WIGGLES!” which really just means I don’t like what I’m doing or watching so please offer 500 additional options, and then I’ll agree to one of them by telling you – “BYE! BYE!” Or I wander aimlessly to my bedroom where I check the 24/7 surveillance monitor, but there are no screams and the image on the screen is empty.

And every couple of hours I find myself in the basement, lost, having forgotten what I came for, but my body can’t forget the summer routine, and I breathe deeply – quickly checking for any indication that there may be a diaper to change but there isn’t. There are only the remains of Luke’s favorites: his iPad – in need of charging before he arrives home and numerous sippy cups scattered about that need cleaning – the only cups he will drink from.

And like clock work, morning, noon, and night I ask myself “What am I going to feed Luke today, and do we have those ingredients?” Due to sensory issues, I often prepare his meals separately, and due to my desire for him to eat healthy food, I will go the extra mile to hide the zucchini and green beans.

This is the process of PTSD for caretakers – always being on, always having our senses at high alert; always being at the beckon call of another. It is a refining process like no other; a constant laying down of our life and our desires for someone who is unable to care for themselves. It is a holy calling; it is an exhaustive undertaking. It takes patience and self care and sometimes righteous anger and unrelenting faith – faith in meaning beyond ourselves for that’s why we do it, right? Why we rise to the calling and fulfill the mundane and monotonous tasks day in and day out.

And somehow, gloriously – miraculously really – as the sun appears, or maybe it doesn’t some days, we are greeted yet again with the gift of time which will bring fresh grace and new mercies served alongside lots of lukewarm coffee as we hurriedly offer a familiar prayer – “Give us this day, our daily bread” – like fresh manna from Heaven – manna for the moment – and that is enough. It has to be enough.

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.

 

Why You Should Care About Special Needs Children

 

It can be difficult to understand the complexities of raising a special needs child if this calling is not part of your daily reality. I get it. I never gave these children nor their caretakers a second thought before I had a handicapped child. It’s hard to empathize with a situation without experience.

 

My goal in writing – in books, on the blog, and on social media – is to tell stories that portray all of the aspects of raising a special needs child – the demanding, the taxing, the beautiful, and the joy.

 

There is undoubtedly a blessing. These kids are closer to Heaven than we will ever be with their innocence and child-like faith. They teach us invaluable lessons about the nature of our heavenly father’s love and care for his children. They model joy, perseverance, and faith in quantities us “normal” folk can only dream about BUT –

 

Raising a special needs child is a massively exhausting undertaking as well.

 

A few weeks ago a friend’s 8 year old daughter unexpectedly passed away. This little girl was never supposed to survive; however, these kids often have a way of proving the experts wrong. I recently asked her mama if the new ease of life was haunting because when you live in special needs world, there are rarely moments of ease. It’s like being in a combat zone. You’re always mentally anticipating your child’s next basic needs – hunger, pain, angst, smell, what, where, when, why – all the time. These kids often don’t grow up and become independent so there is no end in sight which can feel overwhelming.

 

One of my greatest goals with The Lucas Project – a non-profit organization to assist special needs families in rural Tennessee – is to educate people on why they should care – even if it’s not a part of their daily reality.

 

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:40

 

These children are the least of the least of the least of these. They often have the mental and emotional capacity of an infant. They are usually physically unable to care for themselves without continual assistance, and without the loving intervention of caretakers, these children could not survive.

 

I would admonish you to care about these kids and their families because you don’t have to care, and that’s a blessing.

 

Special needs may not be a part of your daily reality, but it is a reality for 6.7 million children (nces.ed.gov) and often includes:

 

Bathing a grown child

Feeding – either by utensil or tube feeding – often restrained in a special chair.

Diapering a thirteen year old

Wondering at times if one day you’ll be diapering a thirty year old.

Restraining a teenager who has become aggressive due to puberty.

Entering the local ER in the middle of the night to play a guessing game for the next 24 hours as you try to determine the cause of angst in your non-verbal child.

Declining an invitation for a fun event because there is no one to watch your child, and he or she would cause disruptions and outbursts.

Attempting to distract a child who is frustrated and banging his head against his crib.

Sleeping with a baby monitor beside your head for 18 + years

Getting up multiple times in the middle of the night to administer meds, tubes or breathing equipment or to make sure your child is still alive.

Spending the majority of your free time in a doctor or therapist’s office.

Not being alone with your spouse in years because there is no one you trust to care for your child in your absence.

Suffering extreme pain and popping Advil like it’s candy because your child has grown too large for you to comfortably handle, and the strain is taking a toll on your aging body.

 

You should care about caretakers who experience stress, anxiety, exhaustion, and depression on a regular basis but don’t have the funds nor the time to address the problem, and in rural environments, lacking in professionals to even help address the problem!

 

You should care if you live where resources are plentiful because there are people who live in rural communities where resources are sorely lacking.

 

You should care if your children are healthy because there are parents who manage a child’s chronic illness every day of their lives.

 

You should care because we are all a part of this grand body known as humanity, and we have a moral obligation to care for one another, especially the least of these, like our lives depend upon it – because they do.

 

Please consider a donation to The Lucas Project so that we can all begin caring or check out TheLucasProject.org to learn more.

 

Just keep livin.

Sunlight Burning at Midnight – a Celebration of a Special Needs Child.

It’s Lukie’s 12th birthday – be still my soul.  My miracle boy is a pre-teen – a pre-teen!  From being told he’d never see the light of day to almost a teenager.  Where have the years gone? There are so many emotions that flood my heart as I think on this day, this 12th year of his life, and the significance that it brings in terms of my own life and God’s faithfulness throughout many difficult times.  

 I think back to the prenatal appointment in 2004; the appointment where I was told my unborn child would never live.  I think about the moment he was aggressively lifted out of my body and  how I immediately heard his scream, and how I then wept tears of joy and tears of fear over the unknown that still awaited our lives.   I think about the anxious thoughts running through my mind 50 billion miles a minute on that day, August 12, 2004 –

 “Is he okay?!”, “Will he survive?!”  “He’s so beautiful, I want to hold him forever lest he take his last breath…”

 And choking back tears through a fake brave smile as he was immediately whisked away to neo – natal care, Jason and I nervously looking on, unable to do anything for our newborn son in those moments.  I think about the struggles we had while raising him, the fears, the sleepless nights, the angst of his lukisms, and the accomplishments that arrived much slower for him than for other children but monumental they were when they finally did make their arrival. I think about the future for Luke – the next 12 years – and some of those same fears begin to enter my heart.  Will he be ok?  Who will take care of him?  What does continued growth (and puberty!) look like for him?  God, can we handle this?  Can Ryan and I do this with him? Really God, do you still have him and me and my family in the palm of your hand or have you moved on to some other family who needs your care more than we do these days? 

And I’m reminded, as I have been numerous (NUMEROUS) times in days of old –

“Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?” Matthew 6:26

And so I lift my head.  I look to the birds and the bees and the beautiful butterflies fluttering around my yard – not a care in the world.  So much more faith than mine it seems.  I remember – days of past, hard times, times I thought I would crumble against the weight of the world, crumble against the strain of what I was called to walk through, but I didn’t.  He was faithful.  He will continue to be faithful in whatever comes my way this side of Heaven.  

Today, Luke’s day, I choose to focus on the miracle of him and the impact his life has had on mine and on thousands of others, the impact his story, our story, will have on those who need hope, those walking through dark nights, those who need something miraculous like sunlight burning at midnight.   I choose to focus on the honor that was bestowed upon my humble life which allowed me the privilege of walking through hardships in order to one day breathe hope, through my words, through my story,  into another’s dark night.  I choose to push my instinctual fears aside and focus on life, his life, the beauty of Lucas and all that he has been and ever will be.   

And so to honor Luke’s birthday, it seems only appropriate to release the trailer for my book, my baby, twelve years in the making –  Sunlight Burning at Midnight, and along with the trailer release, I am offering a pre-order special because, of course, IT’S LUKE’S BIRTHDAY!

The official launch date for the book will be in November, but for every pre-order I receive before this date, I am offering a personalized, autographed copy.  As you can see, (hopefully) there is a nice, little box beside this blog post with fail proof instructions.  Each book order ($13.99 +S/H) will be placed through pay pal and mailed as soon as hard copies are available (which will be before the official launch – the latest I’ve heard is the first week of October).  So, not only do you get a personalized, autographed copy (believe me, the personalization factor will be a rarity in the future with my life), but you will also be one of the first human beings with a book in hand. 

As always, thank you to all – my publisher, my friends, my family, my husband, my kids, THANK YOU, thank you, thank you, thank you from the bottom of my heart for bearing with me, for lifting my head, and my heart, and my weary body years ago, for believing in this story and the message it conveys, and for supporting me through it all.  To God be the Glory!

Just keep livin!!