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If you can imagine one of those desert movie scenes where the main character is all haggard-looking, stumbling in search of water, that is pretty much me. All. Summer. Long.
Towards the end of fifth grade, my boy’s anxiety seems to build ferociously, likely due to the anticipation of starting middle school this fall. “Easy” transitions are a rare phenomenon in the world of autism and this is going to be no joke. Plagued with the obsessive need to pick at the skin on his fingers and feet, my boy spends most of the summer pitifully trying to care for his self-inflicted wounds, smothering them with Vaseline, putting on Bandaids, lifting the Bandaids to see if everything is “okay” and replacing those that are about to fall-off. All day. Every day. Crying, whining, excessive fast-paced talking and pleading for reassurance. “I am so tired of suffering!” my boy laments. “I wish I could be in someone else’s body!” My boy suffers. Our family suffers.
This is not the first time along our 12-year journey that autism strips me of my calm composure, leaving my nerves raw and exposed. Angry and exhausted, I steal away to our bedroom closet, slump against the mirror and sob, cursing, and shaking my fist at God. Why are you allowing this to continue? Where are you?! I can’t take it anymore! The storm inside me subsides temporarily. I breathe. I ask God to pray for me because I am just too tired to think. I open the door, quietly descend the stairs and pick-up where we left-off.
Later in the summer, I glance at the dried-up stream bed beside the path I walk on a rare morning alone. That stream is just like my soul. All dried-up. I smile to myself as the Bible story comes to mind where Jesus tells the Samaritan woman sitting at the well that she needs to ask for Living Water. Water for the soul. “Give me Living Water,” I pray. And God offers me small drinks of water, just to get me through until the end of summer. Until I can breathe again.
An unsuspecting friend asks about my summer and before I can say much of anything, tears stream down my face and she puts her arms around me while I quietly let out a few sobs. “How can I help?” she asks. “Just do what you are doing, ” I tell her. “Sit here with me and listen.” She shares my pain. My mother-in-law spends time alone with my girl, allowing her to enjoy a few hours away from the tension in our household. My parents bravely take both my girl and boy for a weekend at their house on the farm while my husband and I enjoy a quiet house by ourselves.
These desert seasons have taught me that we are not meant to live life solely on our own strength. There are times when we have to admit our own thirst so that others can provide Living Water for us. Sometimes just enough to keep us going until we can reach a long stretch of fresh flowing water. For me, that life-giving stream comes in the form of a new school year. I will take this time to breathe in quiet. To listen and give my soul what it needs. And then with a quenched spirit, I will offer a cup of water to the next thirsty soul.
In my dream, I am trying to find my way home. I am walking. When I ask Siri for directions, she keeps changing routes and finally settles on the one right in front of me. I have to travel through a decaying urban area and climb the steep concrete wall of a dam. I’m scared, but I start climbing anyways. Higher. Higher. Higher. I near the top of the dam and notice water starting to leak through a crack in the wall. A flood gate has been opened. Cold water rushes out in big torrents and I am tossed about. As I fall downwards with the thundering water, I open my mouth every so often to get air and allow myself to be carried downward. Crashing into the churning water at the bottom of the dam, I rise-up, arms in victory, waving my phone around in the air. “I made it! I made It!” I yell. “I’ll show you just what I made it through because I caught it all on video!”
This was my dream the other night. And it is also my family’s reality as we travel with our boy on this journey with autism. The only way home is precipitous and hard and scary, at times. Our climb is fraught with rigid thinking, pervasive anxiety, intense sibling rivalry and hairy family dynamics. We never know when the dam is going to break and we’ll find ourselves sitting in an anxious, angry mess, wondering just what happened. And yet, we keep on climbing. We climb because we love each other. And we know that love surpasses any fear that threatens to thwart this journey that is ours to travel together. To keep climbing means that even when the flood wall opens and we find ourselves thrashing around at the base of the dam, once again, we are alive to tell about it.
While my particular “wall” happens to be autism, I have come to know so many beautiful souls who are climbing different walls. Just as scary. Just as hard or even harder. Cancer. Broken Marriages. Addiction. Chronic Illness. Abuse. Depression. Racism. We all have stories. Stories of a season(s) in our lives during which we discover our souls being hurled against a concrete bottom, weary and unsure of our ability to stand-up and start climbing again. Perhaps, if we can see ourselves as the heroine of our own stories, raising our arms in victory because we are still here to tell about it, we will be more likely to share our experiences with each other. We can replace fear and judgement with “Me, too.” and “Being human is hard. Let’s climb together.” We can conquer our fear with love.
With both hands, I cup the body of Mama Bird with her cracked, broken wings, and apply gentle pressure. Kneading and smoothing. Adding and taking away. These wings, each lovingly shaped and adorned with small flowers, sat for a few weeks too long, wrapped in wet rags and sitting in a black garbage bag. When I finally get around to attaching them to Mama Bird’s body, the wings have started to dry and crack into pieces as I lift them from their solitary perches. Wings left unused become frail and brittle.
Sensing the panic welling up inside me, my art teacher declares, “You need to pop those suckers on soon and work from there! There’s no way to do it gently.” It is the end of class, so I pack-up the pieces and parts of my bird, once again, in wet rags and lug them home with me so that I can do some emergency repair work. When I unwrap the clay that next morning, I feel a sense of reverence. I aim to make this bird whole again. I can’t help but think, as I hold these broken wings in my hands, that this must be how God feels when He cradles our broken spirits.
The molding process? It can hurt and it might last longer than we would like. In the case of Mama Bird, with some work, I am able to put her back together, all in one piece, but her transformation is still not over. We have glazing issues, where for some odd reason, the “feather white” glaze that I have so carefully chosen, chips-off in tiny pieces when we remove her from the kiln. Even with repeated glazing and firing at higher temperatures, Mama Bird’s glaze continues to flake-off in places. For some reason, though, I am okay with it. Her “shabby chic” exterior speaks to me. The bare clay peeking through is evidence of Mama Bird’s journey. Scars of a warrior.
Early on, I had decided to keep the hole open in Mama Bird’s chest where I hollowed her for firing.
I imagine a huge spray of colorful flowers flowing from that hollow, spilling forth with beauty. The tiny little flowers that I fashioned from vintage fabric and wire sit patiently in a block of green foam while Mama Bird undergoes her many transformations. Now it is time to fill that hollow space. After playing with flower arrangements and securing the wires with a final dose of resin, I step back from Mama Bird and take a look. There is still something missing. This mama bird is a warrior. She needs a crown.
To all my fellow warrior mamas out there, I want you to know that it is never too late to repair your wings. We make mistakes. We suffer losses and heartaches. We may even feel so broken that we cannot fly again. But God, the Master Artist? He specializes in crafting beauty from our brokenness.
I started this painting back in November as a part of an online course called Paint Mojo taught by artist Tracy Verdugo. It sat on the art room easel in its crazy, unfinished state until last month. April. You might say that I lost my mojo for a little while there, but in reality, I just couldn’t finish everything on my plate at the same time. During those months in between November and April, I found myself preparing for an Open House right before Christmas and then jumped headfirst into finishing my “Ben’s Dream” piece just in time for an Autism Awareness exhibit in April. All the while, this big canvas brimming with bright colors and symbols winked at me in the corner of my art room. A reminder that I am always a work in progress.
I am convinced that God called me to start creating art several years ago, the year my girl started kindergarten, as a means of helping me practice the real art of surrendering my life to Him on a daily basis. To loosen my grip on the steering wheel and trust the process. My whole art journey has been a series of surrender. Surrendering my old insecurities and ways of thinking. Surrendering to the grief I never allowed myself to feel at the beginning of our boy’s autism journey. And surrendering to the idea that I can be an artist even though my college degrees are in education.
Art has become my metaphor for living life. With each painting, I start with a vague idea or vision and very often do not know how I am going to get there. I just have to start. I paint a big swoosh across the canvas. Or pick-up a piece of collage paper that calls to me and glue it down. Nothing monumental. I just have to do something. Before I know it, that big swoosh is followed by few more swooshes in different colors. I fall into a rhythm. Swoosh. Tear. Glue. Swirl. Ahh. This is how God wants me to start living. Take a step. And another step. You don’t need to know all the answers right now.
Before I know it, a certain energy takes over and LOTS of movement is happening. Almost always, though, I arrive at a certain point in my work, stand back, and think, “But where am I going? What IS my next step?” My heart pounds a little harder and I question my ability to make something out of all the chaos staring back at me. This. This is when I pray. God move through my hands. Guide them in the direction they need to go. Awkwardly, I might sketch-out an image in my mind. Many times, I fumble, frustrated over lines on the paper that do not match my vision. I will myself not to give-up. Something beautiful is waiting to come to fruition. Art is about capturing a feeling, not perfection. And so is life.
Sometimes, I just need to take a break. I sit on the deck with a good book. I scroll through Facebook. (Because creating can feel isolating at times!) I roam around a boutique that inspires me. Or just work on a project that is more structured. I need to refuel in order to persevere through the more trying stages of creating. And when I return to the canvas, I am able to bring a fresh perspective along with me.
When I do return, the vision that needs to be brought to life starts to reveal itself as the images connect on the canvas. A crazy line or paint dot becomes a bird’s beak. The splotch of blue ink that I thought was a mistake peeks through the background adding just the right effect. Nothing is wasted. I fly free in the knowledge that I can trust the process, both in my art and in life.
Last year, I spelled out the word “Steward” with our Scrabble letters and set them upon my kitchen windowsill to guide my intentions throughout 2014. When I chose the word “steward” as my focus, I remember thinking that I really needed to be a better steward of my time at home, as I had lots of aspirations for my creative business, but often became derailed too easily. This was the year that I would not allow things like Facebook and internet surfing to steal precious time. I would set business hours and art hours and stick to them! I even bought Julie Morgenstern’s book, Time Management from the Inside Out, to give myself an added boost.
By mid-January; however, it did not take me long to realize that God had a different vision of what it meant for me to be a good steward of my time last year. The power struggles between my girl and me had reached an all-time high and I was failing miserably at being the calm, loving mom that she needed me to be. The anger I felt inside felt a little scary some days and I knew it was time to ask for help. My time this past year was meant to be spent in healing.
I spent a good 4-5 months working with a counselor, just healing my spirit. Allowing myself to grieve parts of my life journey, my boy’s autism diagnosis, and my girl’s unique struggles. As I released the trapped feelings from my brain, their physical grip on my heart loosened, as well. With a new found sense of calm, I was then able to move on to other aspects of our current situation that needed attention.
As a preschooler, my girl had been diagnosed with sensory processing difficulties, an anxiety disorder and ADHD. I often describe all these diagnosis as the “leftovers” of autism. While we sought interventions for my girl when these things first became apparent, the symptoms lessened over time and I guess I just pushed those very real struggles to the back of my mind, as we were still heavily in the throes of addressing my boy’s autism. That said, it was now time to better understand and address my girl’s needs.
So, my husband and I began meeting with a counselor together to hone our parenting skills. While we share a number of strengths in our marriage, we also made the realization that we needed to communicate and be more assertive about our own individual needs. We both felt like “martyrs” for our family, working somewhat independently to survive. Recognizing the importance of validating and supporting each other so that we can function better as a unit has been big for us. And, as you can guess, a happier, calmer Mom and Dad sets the tone for a more loving, peaceful household. Apart from our counseling, my girl is now receiving occupational therapy each week to address her sensory needs and we are in the process of completing some educational evaluations to see if there are any other areas that we might be missing. Lots of hard work going-on here!
As our family continues to heal and move forward together, I have decided that my word for this year is going to be “Trust.” Trust the process. Trust that life will reveal itself and unfold just as it supposed to. And while I keep dreaming and setting goals for myself, I will hold these things loosely, allowing God to gently guide my path. He’s got this. I just need to trust Him.
If you want to stay close to Me and do things My way, ask Me to show you the path forward moment by moment. Instead of dashing headlong toward your goal, let Me set the pace. Slow down, and enjoy the journey in My Presence. -Sarah Young, Jesus Calling
(Another little peek of Ben’s Dream.)
“Now faith is the substance of things hoped for, the evidence of things not seen” (KJV)
With my boy and girl settling back into the fall school routine, I was all ready to dive-into creating art and taking steps to helping my business grow. And then, life being what it is, the whole family came-down with a cold, the toilet overflowed, and a mysterious blistering rash showed-up on my girl’s elbow, then her face, and later my boy’s butt cheek…Yeah. I know. Gross. Along with several previously scheduled autism-related doctor’s appointments, we threw in a couple of extra trips to the pediatrician to figure-out the rash, and before you know it, two weeks passed and not much art had been made on my end.
Sensing the discouragement, the little “Brain Bully” in my head seized the moment and started whispering things like, “This is why you’ll never reach your dreams! Your family life is just too demanding! Do you really want to put all that energy into something that might not even work out?” To drive the point home, I started an online art class, and immediately felt overwhelmed by the sheer volume of work being shared by my fellow classmates on the group Facebook page…Really, do these people have families?
So, yes, I felt a little anxious, if not a bit cynical. Still, I picked-up my paint brush for a few hours here and there throughout the following week. I crocheted some beads one afternoon while my boy and girl played contentedly outside. I pushed-through a class project that felt foreign to me. Gradually, the momentum that I feared losing started to return. Evidence of things not seen.
I am realizing that creating art and living life are continuous acts of faith. While I carry these visions and dreams that God has placed in my heart, with gentle hands, I must surrender the final outcome and how it will look to God. I find such beauty and relief in knowing that it is not up to me to figure-out how long it will take or exactly how I will get there. All God is asking me to do is to listen to his whispers and keep picking-up that paintbrush. I think I can do that.
I while back, I left you with the beginning of Ben’s Dream. A process of expressing my emotions regarding this whole autism journey that Ben and I have been traveling together over the past 10 years. Following my intuition, I scrawled words across the canvas, brushed sad, angry, hopeful strokes over top of my words, printed, stenciled, and collaged my way through these beginning phases. Slowly, I started to see all of these marks begin to dance together in a sort of joyful, healing release.
With my ultimate goal being to capture a dream that my boy shared with me one morning several years ago, I knew that while that beginning phase would provide the underlying structure for this piece, Ben’s Dream, I would eventually need to paint over top of it in order to achieve a more unified background. So, after enjoying the first dance for a few weeks, I decided it was time to move-on to “phase II” of Ben’s Dream. I did not want to paint over all that richness. At the same time, I have come to trust the process and believed that the movement and emotion that lie beneath the next layers would emerge again, in its own time.
It was really hard to sit with a background that seemed “less than” at the time. I could hardly wait to add more layers in my next session!
Those hills and sky are dancing, once again…Soon, they will be singing with the final layers of Ben’s Dream! Here is a little peek of what will be going into those layers – Ben’s houses.
As I enter these final phases of Ben’s Dream I, too, am starting to dream along with him. How can I support my boy’s real life dreams? Perhaps his and mine might dance together…
For a while now, I have felt restless in my role as “stay-at-home mom.” Good or bad, having fought the infertility battle years ago in order to create our family, I probably took-on my mom role with more intensity than some . And, when autism was added to the mix, being a mom became real “serious business.”
Our family took a pretty big hit during those early years of parenthood. Most of our time and energy was focused on getting our boy the therapies that he needed, fulfilling basic needs and grasping for spaces of time here and there to breathe. That said, almost 10 years later, I finally feel like all the pieces might be coming together. With both my girl and boy in school for the past several years, I have spent a good deal of time finding myself again, pursuing my passion for creating art, allowing myself to grieve, and celebrating my boy and girl as they become more independent.
While my soul has emerged in so many ways, I feel like I have remained partially stuck inside the cocoon. Half of me mired in the serious business of being a good mom and wife and half of me trying to figure-out how to take flight in a new form. So, when my husband and I sat across from a family counselor a while back, it suddenly became clear to me that I had never fully shared this readiness to take flight. I mean, I thought I had, but somehow, the message became watered-down in the process.
With this new awareness, my husband and I are discovering the healing power of learning to be assertive with our own needs, not just the kids’, and to take the time to encourage and celebrate each others’ efforts as we grow together. Instead of simply “surviving,” as a family, we are on our way to thriving. And it. feels. good.
As we take flight as a family, I also look forward to taking flight in my art business. Over the summer, I devoured artist Kelly Rae Robert’s e-book: Flying Lessons. One piece of advice that spoke to me as I read through Kelly Rae’s book is that I need to commit to my art and my business. Up until recently, I felt safer staying half-stuck in my cocoon, in my official “stay-at-home-mom” status, while simply treating my art as a hobby. If I really want to take flight, though, I need to allow my wings to fully develop. I need to shed that last layer holding me back from completely emerging.
So, here I sit. Warm mug in hand and a year full of possibilities before me. I can’t wait to see how it feels to fly!
“We all need to wear T-shirts that say, ‘Motley Crue'” says my husband jokingly as we head towards the Outer Banks of N.C. for our family’s annual beach trip. We are, indeed, a model of diversity and acceptance for those outside the “norm.” There is our own boy with his high-functioning autism and passion for maps, houses and presidents. Our girl with her ADHD, activity-seeking self. Our older niece with Aspergers (a form of autism) who embodies the mysterious side of vampires and wolves. And my niece’s boyfriend, also with Aspergers, who came along for the ride for the first-time this year.
I laughed, thinking of previous vacations and all the strange habits that our family has learned to contend with as a result of having children on the autism spectrum. There was the first-summer that we all decided to vacation together in the same beach house. My boy was scared to use the public bathrooms along the way, due to the loud toilets, so we strategically stopped at rest areas where he could go behind the trees unnoticed. I think it was that same year when our boy also insisted that we tie kitchen towels tightly around his head and on his wrists throughout the whole week at the beach. We have pictures of him wearing a red and white-striped kitchen towel tied around his head as he stood in front of the Cape Hatteras Lighthouse. I guess it satisfied some sensory need. He also hated the feeling of sand…I wondered if we would ever be able to enjoy the beach together. Suffice to say, our boy seems to have overcome the sensory difficulties with sand!
I am happy to say that while we are still a motley crew, we have come a long way since those first years of “vacation.” Aside from the innocuous sound of a cat-call whistle every-time we entered a new city and “Charge!” played from the back seat at every new county sign, our boy handled the 6-hour trip to the beach like a champ. (Thanks, Easter Bunny, for the sound machine!) Rest areas are now a non-issue and we have even expanded our repertoire of restaurants beyond Taco Bell along the way.
We were a bit worried that a rainy start to the week might be a challenge for our girl, who was chomping at the bit to feel the rush of the waves against her body. She likes to stay active and to be in charge. While my dad did report that both my boy and girl were “swinging from the rafters” at one point, our girl managed to channel her energy fairly well, teaching my sister how to play Skipbo, trying her best to encourage my niece and her boyfriend to join us in a round of “Freeze Dance” (I think they ran away to the screened-in porch.), and making sure that we did not miss any windows of dry weather to scamper alongside the surf. And, during our visit to the Cape Hatteras Lighthouse this year, our girl took the opportunity to dance in the rain!
Yes, vacation with our children can be challenging sometimes. “Lost” items and changes in routine can send us into a tailspin at the drop of a hat. At the same time, these loved ones encourage us to not only accept their eccentricities, but to embrace them. On one particular rainy day, our boy managed to get everyone in the family to write a ghost story and read it aloud. While the adults did actually write stories, others members chose to draw pictures of ghosts and vampires with bleeding mouths. And my girl, who supposedly could not think of a ghost story, wrote a sweet essay about how awesome her big brother is…I think she might have been trying to win some “brownie points,” but her words still touched my heart.
Later that week, when the dryer took forever to dry a load of clothes, our boy reveled in the opportunity to help his Mamaw devise a special vacuum attachment in order to vacuum the load of sand built-up in the dryer vent. His fervor for vacuuming also came in quite handy when it was time to clean the beach house at the end of the week.
At times, I do notice other families leisurely hanging-out on the beach all day reading books, playing paddle ball, surfing in the waves. No apparent oddities or special accommodations to be made. I wonder how it must feel. But then I also know that we all have our own back stories. Stories of disappointment and unexpected challenges. Each one is just as messy, real, and beautiful as mine.
A motley crew? Yes. Loved and accepted? Yes. Thank you, God, for allowing me to see all that is pure, lovely and true. Especially amidst our motley crew.
The Blue Mug 
