My own search for sanctuary

Finding sanctuary in my own life has been an an extraordinary journey – one that continues today. But it all started with my baby girl.

Author’s note: this will take you about 15 minutes to read, has a happy ending and is totally worth it.

My daughter gave me a gift on the day she was born. It took me sixteen years to open it. But once I did open it, my life changed profoundly. The contents of that package set off an explosion of truth and growth. A personal journey of love, healing and interior design has been the result.

Interior design? Yes, you read that correctly. Let me explain.

We all need space — personal, private, sacred space that belongs to no one else. A place to be creative, a place to explore ourselves and the world around us, a place to heal and hide and pray. A place to cry and laugh and express all of the beauty and zaniness that is inside us. A place to decompress and rest. A place to find refuge and solace when we need it, to nurse our wounds and take off the bandages that hide our vulnerability. A place to begin and end our days — a home base. The only word I’ve been able to find that fits this description is sanctuary. And that is where interior design comes in.

The road I’ve been on has felt more like a roller coaster at times — hill after hill of ups and downs. And I found that for myself and for my family, creating a sanctuary to cradle all of us as a whole, and then smaller, individual sanctuaries within that larger framework was exactly what we needed to support us. That’s where my story comes in.

It sounds easy, explaining it like this, all neat and tidy. But the truth is, my path has been like putting together a giant jigsaw puzzle without the pretty picture on the cover of the box to follow. It took me awhile to start a logical search for the corners and the flat edged pieces first.

Part 1: FIGURING OUT WHAT HAPPENED TO MY PERFECT LIFE, or WHY DIDN’T MY LIFE PUZZLE COME WITH A REFERENCE PICTURE?

I know that there are people out there who have lives that look perfect. I used to be one of them. People who feel successful as parents, with children who get the 4.0 grade point average and are future model citizens with brilliant careers on the horizon. I see these parents posting on social media, complete with smiling pictures and radiant updates. I admire them. I muse at their good fortune. But this is not me. This is not the course my life has taken.

I am the one who refrains from sharing much in the public forum because some of what happens is upsetting. Some of what happens is embarrassing. And some of what happens is downright terrifying. But lately it has occurred to me that maybe those of us with the less-than-perfect life experiences need a spokesperson. So I am stepping forward to share a bit of my tale, hoping that it will inspire you to take a deep breath and realize you are not alone in whatever you are experiencing. And maybe the coping methods I’ve invented out of sheer necessity will give you some fresh ideas for dealing with your own situations. The one thing I have figured out for sure is that nearly all of us have situations.

My tale begins with a baby girl born who I felt sure would be that pink little bundle of smiles and gurgles, growing into an adorable, ballet-bound toddler who would endear herself to everyone who met her. You can imagine my surprise when that was not the case at all. A whirling dervish of surprisingly destructive energy who refused to wear clothes and keep on her diaper, my sweet girl needed constant supervision just to keep her out of harm’s way and to protect the people and environments around her. She was dismissed from the early learning center for being aggressive and unable to participate in a classroom experience.

This was not what I had planned at all. And so, I found myself unhappy and with dashed expectations. Note to self: come back to expectations — they are the root of much unhappiness.

Time passed. School began and a pattern emerged: teachers raised concerns and conferences were held. New concerns were added to unresolved old ones followed by more conferences. A diagnosis and a now another new pattern: trips to see doctors, and specialists, followed by trials of medication, and then with a return to everything natural and organic.

More doctors, more specialists, and many authors… books about healing children with behavior disorders. And still no magic bullet. I found myself pushing against these circumstances, resisting the reality of my life.

Fast forward to 8 years old. School situations worsened, new reports were filed, now regarding her “inappropriate behavior.” I had a nearly constant stomach ache. I was not ready for this. I did not feel prepared. I was sure that life was unfair, unkind and somehow I had stepped into an experience that must have been meant for someone else.

And suddenly at 10 years old, nighttime seizures. Grand mal, falling down, Darth-Vader-breathing, foaming-at-the-mouth seizures. If I thought I was scared before, now I was on absolute pins and needles. I thought, “What on earth was happening? Where did this come from?” And more importantly, “Was this my fault? Had I somehow failed so acutely as a mother that I had inflicted this wrenching experience on her?” Suggestions surfaced — it’s stress, it’s genetics, it’s trauma. My parenting experience had become a vortex of drama, hurt and bemusement. I didn’t want this experience but I couldn’t escape it either.

More time, more searching, more doctors. Finally, we heard the news that this seizure disorder was a result of the basic wiring in her brain. The seizures had been going to start at some point and impending puberty was as good a time as any. Not stress. Not trauma. A new medication and no more seizures. I was giddy with relief. And so tired I wanted to sleep for 10,000 years.

The tale doesn’t end there, and while it seemed for a while that a happy ending was on the horizon, actually, it wasn’t quite that way. Not yet, but there is one coming.

She still didn’t make friends. Still struggled to learn and participate in a classroom setting. Still behaved at home in way that could only be called mercurial–oscillating between rage and euphoria. And still I watched my life, feeling like an outsider in my own experience.

High school approached and the special education team at the school sat down with me to discuss her future. She would not graduate with a “normal diploma,” but rather with a “special diploma.” Attending college classes for credit would not be possible, and with that news came another set of my expectations dashed. Dastardly buggers, those expectations.

I wondered: “What would her adult life look like?”

I worried, “What would happen to her if something happened to me?” 

We found a high school for kids with learning challenges and enrolled her. It was expensive, and so we restructured our finances. It was far away, and so we rescheduled to accommodate the commute. I prayed daily: “Please let her have a good opportunity to learn, and develop, and catch up with school and life.” Prayers went seemingly unanswered. We were back to where we started so long ago with the old established pattern: teachers’ concerns, conferences, and now suspensions were thrown into the mix.

And me? I became desperate, unsure whether I was even qualified to parent her anymore. I couldn’t seem to keep her safe. I couldn’t seem to keep the rest of our family safe either. The head of the school suggested a residential program. I didn’t even know what that was. I asked and when I heard the answer, I hung up the phone and cried for the rest of the evening.

When would this shift, even one tiny inch? When would the way, a way, become clear? When would I know what to do?

And I know you’ve been patient with me, so please don’t give up on my story yet. Because what follows can only be described as a miracle. Yes, finally a miracle.

Part 2 — FINDING THE CORNER PIECES OF THE PUZZLE

Our local mental health center recommended us for a program with a multidisciplinary approach. They accepted us, and it proved to be not just a fit, but the right fit, and not just for her, but for our whole family. They utilized a team of mental health professionals who worked with my daughter, sometimes daily, and our entire family, weekly. A therapist, a psychiatrist, a nurse, a mentor and a caseworker.

We went in broken, worn-out and terrified. They listened to our story with patience and understanding. There was no shock or surprise on their faces — only compassion.

I remember having the sensation that I was lying on my back at the very bottom of the well, knowing I had finally reached the bottom and there was no where to go but up. And the faces looking down at me were reaching out a hand to help. They were kind faces, full of empathy. I was certain they were the most beautiful faces I had ever seen.

In that moment, the kaleidoscope of my life turned, and I felt something shifting, that one tiny inch. But still, to this day I believe it was that small shift that has made the greatest difference. Suddenly, the dull colors and cloudy view became brighter and more clear. At last. A lifeline.

The straight-edged pieces are revealed

We worked hard with the team of mental health professionals, invested an abundance time and energy in our family and our future. And it finally occurred to me that there wasn’t a guaranteed end point or solution to the challenges I was facing in raising my daughter. The frustration and feeling of helplessness could actually go on indefinitely if I let them. And with this realization came an unexpected feeling of calm resignation and surrender. I couldn’t fix it, so in that moment, I finally stopped trying to.

I began to understand the power of accepting and embracing our journey instead of fighting it.

Immediately feeling lighter, I wondered why I had ever thought I could control the situation. There was no way for me to do that. I knew this with deep certainty because I had tried so hard and failed so miserably. Isn’t that funny? I have to make everything so difficult sometimes when the simple truth is right there in front of me.

The truth is this was not my battle.

I had been fumbling through the dark for months and finally it was like the overhead light switched on. I’d been looking at it all wrong. By trying to fight her battle for her and control everything I was denying her the experience of overcoming her demons. Denying her not just the thrill of victory, but robbing her of the confidence that comes from dealing successfully with obstacles. And me? I was denying myself things, too: a peaceful existence, and a soul’s journey that was completely my own, lost due to my complete focus on hers.

Stepping away and letting go was my lesson. Relaxing and trusting that everything would eventually work out for the best of everyone involved was in there too. I felt myself breathing deeply for the first time in a really, really long time.

The middle pieces start to fall into place

On the heels of my revelation, I found myself seeing for the first time in 16 years, the absolute beauty and serendipity that my daughter brought to my life.

I could see the amazing chain of events that was set into play the minute we learned she was not what the medical community calls a typical child.

I finally saw that what had seemed like such an alarming, scary day was actually the dawning of an era of possibility and growth. The book of my expectations was slammed shut and I started on not just a new chapter, I switched books completely.

It might sound odd, but I saw how positively my relationships were affected — how much closer I was to my husband because of the hard days and the painful searching we had done together to find a solution and a path forward. My mom always told me that, “you really see what a person is made of when the chips are down.” It turns out she was right. My husband was (and is) amazing — supportive, steady, strong and able to find humor when the chips were not just down — they were strewn all over the table and spilling onto the floor. Would I have seen the treasures he has inside without going through such challenging times?

I saw how it forced me to dig ever deeper for more patience, more strength, more love and tolerance. Would I have found that well of depth and substance inside myself without her helping to call it forward?

All of those times I’d had the thought that life just wasn’t fair seem crazy in retrospect. Since when was life ever supposed to be fair? It isn’t. I am a little stunned that it took me 47 years to figure that out. We simply do not grow when we’re not challenged, at least I don’t. I guess I need a bit of adversity to make me strive to change my circumstances.

Looking back, I see firsthand how invention truly is born from necessity. My entire interior design career has a new focus of creating peaceful, healing environments because we have needed one so badly at home in order to help us cope. Remember my reference to creating sanctuary at the start of this story?

I look around me now and see that my house and even my studio has become a laboratory where I am actively trying out ideas, finishes, products, fabrics — seeking tools to help us deal with the reality of our life. Ways to soothe myself and my family. Ways that benefit my staff and my clients. Ways to bring a calming, grounding influence into every environment I touch. And the best part is, it’s working.

From there, I’ve been following my curiosity and considering the incredible impact our physical environment has on our moods, our relationships, our ability to thrive while dealing with the challenges in our lives. Powerful. Almost mind-blowing the more I think about it. It has motivated me to shift both the basic message, and direction, of my design firm. We are launching a new website to help us share the message — this message of hope, peace and support designed into our living spaces. We’ve been designing our own products to support our direction and even writing a book.

Part 3: THE PUZZLE STILL ISN’T FINISHED

The puzzle won’t ever be finished. Not really. Today, our story is still unfolding, and our puzzle is a work in progress. I will tell you that I do not have all the answers. We continue to have many bumps, which sometimes feel more like full on collisions, but other times they’re more like little hiccups. And believe me when I tell you that I can appreciate the difference.

The truth is, there has been progress. What had felt like a burden and a hardship has been revealed to be exactly what I have needed to grow and evolve as a mother, a wife, an entrepreneur, a designer and just as a human being. It is a little embarrassing to be honest, knowing it took me so many years to rescue the truth that had gotten lost under my feelings of victimhood and (perceived) suffering. Embarrassing, too, knowing I held that precious gift in my hands for so long without opening it.

My involvement in the journey of my child’s physical and mental health, touched off a healing journey for me too — and that is the next part of the story I want to share. It’s the story of a much needed toolbox. The kind that kids like my daughter, who are out of sync with other kids, and situations, and well, out of sync with life in general, need. It’s a survival kit of coping skills and mechanisms they can call on to help themselves feel better when they’re upset. They can use it to help calm themselves when they are frantic, and soothe themselves when they are filled with sadness. The goal behind it is simple: to help them learn to regulate themselves, their moods, and ultimately their behavior. And as I helped my daughter make her own toolbox, something occurred to me: I need one too.

And actually, so does everyone I have ever met.

So what do toolboxes, Sanctuary and putting together a puzzle without a helpful picture have in common? You. Me. And everyone we know. All of our lives. All of our journeys. We all need sanctuary — that place to soothe our souls. We all need a toolbox containing keys to our survival so that we can do more than just get by — so we can thrive.

And so that brings me to today. To right now, this incandescent, shimmering moment when I can let all of it go. Because when I let it all go,  every single, unhappy, frustrating, frightening moment can just vaporize into a mist, like the mirage it has been.

Here is the truth that I now know: I have the most remarkable daughter who wakes up every morning and faces her world courageously and tries her very best.

And now I see something else I didn’t see before: I have the most beautiful story to share and oh so much that I want to do.

So see? I told you I had a happy ending in store for you. But it’s not really an ending, is it?

That makes this ending more like a beginning. And oh what a beginning…

Chloe and I sharing a session of art therapy in my sanctuary.  Photo By Brian Tietz