Why I Write

I’ve often been asked why I write. As in why I write here. For you.

I suppose it’s one thing to write for yourself; about your life…about your struggles…about your fears…and lock it away in some private space. But it’s an entirely different thing to write online…to write for the entire world to see.

And so, for nearly 4 years, you’ve asked…and now, I’ll answer; it’s not pretty…it’s not romantic…and it’s not eloquent. But it is the truth.

I write because – when I was young – I used to have an imaginary friend. My imaginary friend had a quiet, invisible voice. And that voice made living in this world a lot easier for me. That voice came out in my childhood journaling…it anchored me – looking back – it saved me.

I often felt very alone as a little girl. As though I had somehow been dropped somewhere that I wasn’t meant to be.

I would watch everyone around me make friendships…make plans…make room to belong. And I never felt like one of them.

I had some beautiful people in my life…but something always felt different. Every connection always felt somewhat at arm’s length.

I was never someone’s safety net. I was never really someone’s best friend. I was never someone’s first choice. Even if they were mine.

And loneliness became a very real thing for me.

If we’re being super honest here…this early feeling of disconnect left me with an insecurity that looks a little something like this…

There is a constant underlying belief within me that I care more about others than they do about me.

I feel like the person who is easy to forget about.

The person who is easy to walk away from.

The person who can lift out of other people’s lives without them even noticing.

And for a long time, it made something inside of me physically hurt. It brought a pain that never really went away. It haunted every friendship that I had. But with age and with God, I learned to become more at ease with my sense of separateness.

A knowing began to fill my soul that I was never really alone at all…and most of the time, I felt okay.

Until I wasn’t okay.

Until the days when I would remember that I’ve never been in someone’s wedding party. Or that I’m not the friend that someone calls when something exciting happens to them. Or that I’ll never be a collection of inside jokes from a lifetime of growing up together.

It’s in those times when the aching spaces would feel very deep and very hollow.

But it’s also been in those times that I’ve come to realize that – for some of us – relationships can be a very polarizing experience.

We crave it and we fear it.

We are healed by it and we are destroyed by it.

We need it and we resist it.

And somewhere in the middle, lies that innate desire we possess to be tethered to solid ground.

But, when I was a little girl…I didn’t know how to sit through that discomfort. I didn’t know how to understand my place in this world. I didn’t know that – even in isolation – we could find strength together.

So, I created someone who did.

That someone had a quiet, invisible voice and was the embodiment of two words that made me feel a lot less alone…

“Me too”

And that’s often all it took. The simple knowledge that I wasn’t standing in the shadows by myself.

And because of this…I write. Here. In this space. For you.

I write because of the air that lingers between us.

I write because of the truth that lives in that space where one of us ends and the other begins.

I write because in our own unique way…we’re all connected.

I write because I believe these are two of the most powerful words in the English language. Two words that blow over us and wrap us in the comfort of all our common threads. Two words that can reach down into the darkness and pull us all from the wreckage.

But in order for those words to exist…someone needs to blink first.

And so I write.

I write because I have come to believe that sometimes – we all need an invisible, quiet voice to share the most beautiful of whispers…

“Me too”.

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Together

Sometimes I sit here…staring at this screen…and I just don’t know what to say. Because sometimes, it’s just not easy. Sometimes, what you want to say and what you feel just aren’t on the same frequency. Sometimes, what pours out of your heart doesn’t always pour out onto paper.

And then fear. Vulnerability.

To me, fear always felt like a hostage situation. As though I was somehow handcuffed to circumstances I couldn’t break away from. And all the while, I’d forget that I also possessed the key to those very same handcuffs.

I was both the hostage and the one holding myself captive.

There’s something incredibly overwhelming about being brought to your knees in pure gratitude. About having your vulnerability bring people together. About being a part of something so much bigger than your self.

There is something incredibly overwhelming about being seen. For all that you are. All that you were. And all that you hope to be.

When I look at it, I am reminded of a fundamental truth…a truth that I nearly let pass me by in my river of sadness. I am reminded that while our own walk with God is just that…our own…our walk through life was never meant to be taken alone.

Because that’s what this life is really about. Crying together. Laughing together. Living together. Reaching out to the heavens…together.

Heartiversary

Four years ago today, as snow began to heavily blanket the earth in the early morning hours, we prepared for the unpreparable.

I remember my head and heart in constant battle as we learned the medical team was having difficulty getting to the hospital due to road conditions. If they didn’t arrive and surgery was postponed I’d get to hold on to my baby just a little longer…I wouldn’t have to face this.

My head knew he needed surgery to survive but my heart and arms just wouldn’t let him go. The halls were silent that morning but for my muffled cries. I was numb as Scott and I wheeled him to the OR doors. I fought the fearful thoughts creeping in my mind, as this walk eerily felt like a funeral procession…and I was so afraid it was.

I was cold and hollow and at the same time, full of more love and warmth than I’ve ever known.

Physically ill with fear, my stomach was somersaulting in my throat, then plummeting to my feet and back up again. In one minute I was preparing myself to say a forever goodbye and in the next, I knew with all that was in me, that he would be okay. I was like a ball with all the pain of being slammed to the ground and then tossed high up to the sky in exhilarating joy. Up and down, up and down, for all the hours of his surgery until I could lay my burning and bloodshot eyes on him once again.

(1/3/14 post op)

I’ve never spoken of the fear I had in this very moment. It’s something I try not to think about too much. It wasn’t for lack of faith in our medical team, it was the knowledge that our children are never really ours…they belong to God…and He calls them home in His time. His time – not mine. I was not in control.

Would Luke’s purpose have been served in his one month and 10 days on this earth? I prayed with all that I was, that it wasn’t. I prayed for a long, healthy, happy life. Together.

Our walk down winding and sterile halls that morning was a walk to new life. It was a walk to rebirth. The door to Luke’s heart was opened that morning and he was gifted life for the second time. Life I could not ever give him.

(Happy Heartiversary cake)

There are times on this earth when we can prepare…and there are times when no amount of preparation will ever be enough. Times we are in control and times when all control must be surrendered. In those hours all we can do is hold on to each other, to Love. Hold on to faith. Hold on to the Peace that there is so much more than this life…so much more.

As mom to a heart warrior, I honor life with that knowledge, living every day in love, faith and so much thankfulness.

Happy Heartiversary, my sweetest Luke.

❤️💙

Collision

“We were all heading for each other on a collision course, no matter what. Maybe some people are just meant to be in the same story.” -Jandy Nelson, I’ll Give You The Sun

I read an article a few months ago about a group of scientists who believe there are people in this world that each of us is drawn to on a cellular level. It’s different than attraction, different than friendship, different than love.

They say it’s often something we don’t understand – something that we can’t explain – something over which we have no control. They believe that when these people are apart, life tends to go on seemingly unaffected.

However, if they suddenly find themselves in each other’s lives, a tension arises…a great force that leaves both people feeling a sense of restlessness and dis-ease. The closer those cells come to each other, the closer they need to be. And so they pull.

It’s both a strange and beautiful thought that leaves me curious about some of the people in my life…

It’s that person you think of and suddenly receive a phone call from…that person you had a dream about and unexpectedly run into them while going about your day…that person that doesn’t utter a word and yet, you know that something is wrong.

And although there is this draw to each other, it’s also believed that these people can experience great unexplainable conflict between each other. Mostly because on some level, they make us feel afraid – we become afraid of what we can’t control. We become afraid of what they see…and we also become afraid of not having them in our lives. We seldom understand it, but we almost always, without fail, ‘feel’ it. And so we push…

Therein lies the collision…the desire to move towards something and destroy it all at the same time. The need to push…and the need to pull.

I used to believe it was my job to avoid collisions…we are taught to stay out of harm’s way. But then I realized that meant I wouldn’t get to experience that Divine force that brings some of us together…whether I understood it or not.

Right now, I’m trying really hard to just drive…even though it scares me. Because I don’t believe all collisions happen just because we are bad drivers. Sometimes the weather is harsh, the road not visible. We chart our course on pavement, and somehow, we end up in a sea of uncertainty. The depth of ocean washing over us, that threatens to swallow our fears, our vulnerabilities, maybe even our joys.

So I’m trying hard to just ‘feel’ those people in my life right now…because feeling is who I am…

I am a person who feels life.

Though I also see it and hear it and think it and touch it, my dominant sense in this life is to feel…Truly. Madly. Deeply. This is both my greatest strength and my greatest weakness…my ultimate undoing.

Because your tears become my tears. Your pain becomes my pain. Your loss becomes my loss. And depending on the person, this can be a problem. Because, if I love you…I will drown with you. I will throw myself overboard into the depths and darkness of salty sea…I will hold your hand…I will let my lungs fill up right alongside you…and I will drown in an ocean of our collective tears just so you don’t have to sink alone.

But I would really love to stop doing that.

Because ultimately, it doesn’t end up helping you…it just ends up hurting me. We both end up holding our breath while we wait for the glimmer of light to guide us ashore, or a search party to bring us back to life.

The truth is, being a human is scary sometimes. Loving people is scary sometimes. And knowing how much of yourself to give…is REALLY scary sometimes.

But I’m learning that my love can do a lot of things…

My love can teach you to swim. My love can throw you a life raft. My love can even call the coast guard. My love will search through all hours of darkness for you. But my love can’t rescue someone who doesn’t want to be saved.

And sometimes, as hard as it is, people need to see how far they can sink before their lungs cave in. I know…I’ve been that person.

But I can’t go down with you anymore, because my love also wants to be there for you when you come up for air like I know you will. My love wants to meet you at the shore…bring you a soft blanket…a warm fire…and a safe place to land. My love wants to help you recover and find your strength again…the fire that burns inside you, never to be extinguished.

And my love can’t do any of that if it’s being pulled from the water alongside you.

And so…the push…the pull…the drawing force of cells…the uniting and untying of souls, it cannot all be lost to some wreckage in a sea of abyss. Because my love doesn’t want to lose you…because my love doesn’t want to lose me either.
When the tides roll in and the current runs deep, I want to be there FOR you, not just with you. And because…I’m not done believing that we are only just meant to be in the same story.

 

 

 

 

 

Faith Renewed 

It’s Spring. And I’ve been caught in my own deep winter for far too long.

The leaves have long since fallen, nature unclenching her fist. And I am brought back to the resounding discomfort that often comes with letting go. The pain of watching something fall from a tightened grasp.

Winter came.

And for me, Winter stayed.

I knelt on the ground, picking up the crumbled and crisped leaf, its vibrant beauty lost from months of cold and snow and rain. And that’s when I realized it – I have been caught up in my own cold winter. Clenched fists, fighting, struggling to stay on that limb and not fall to the cold, barren ground beneath. Hanging on to the bud so tightly, I lost sight of what comes next…

Spring.

An incredible time of growth and renewal. A time when all that once was, turns into everything it can be. A time that could never exist if the trees were not willing to release everything in their due time.

Nature does not resist letting go because it’s afraid of the loss. Nature embraces letting go because it creates space for something new. Something beautiful. Nature does not endure in the name of grief – it endures in the name of possibility.

Sometimes we have to let go of the beauty we once created – a person, a place, a deeply rooted dream. We have to breathe like blowing wind, carrying remnants of seasons past, leaving the ache of absence behind.

We must believe in nature’s greatest act of surrender – trusting that after every cold winter, Spring always comes.

…And I haven’t done a great job of believing.

Trust me when I say, you don’t want to see me right now.

My eyes are tired and swollen from crying. My hair is an unruly mess. My skin is dry and cracked. I’m dehydrated and depleted from surviving on caffeine. My barista has seen more of me than my friends and my at-home coffee Ninja has been on overdrive.

Lately, I don’t even recognize myself.

All I can ever think of is my bed. Sleep. And yet it never comes. My mind racing – it’s like a penned horse, bucking and jerking for the longing of unbridled freedom and the serenity it brings. I’m stuck in the confining corral of my own mind.

I think of all I need to be, want to be, to everyone and for everyone. For myself…whoever that is these days.

I’ve spent months walking through my own personal desert as crisp and cracked as that fallen leaf, and feeling as though at any moment, I would crumble to dust, pieces of me scattered and lost forever. I’d never be whole again.

I never expected to find myself here and I’ve had a hard time finding my way out. I’m still not sure I have the right map…

The landscape was treacherous and the elements fierce. Sleepless nights, discouraging days. I was afraid, isolated, lost. I was angry. I was hurt. I’ve tripped and fallen so many times, the bruises evident for months. I’ve even broken pieces of myself along the way.

But I have not given up. Or rather, He didn’t give up…and I merely pressed forth with His strength.

Sometimes it’s hard to know who you are in the midst of what everyone else believes you to be, or NEEDS you to be.

But that’s one thing the desert is really good at – it lets the sand blow against your rough exterior until finally, you uncover what lies beneath. It forces you to sit with the really hard questions so that you can sit with the really honest answers.

Answers and honesty your heart has known and tried to bury beneath the facades of “I’m okay” “I can handle this”…I’m handling this…right…?

Because sometimes – we can’t. Sometimes our handle on life and what it’s dealt us is the very thing that breaks us…we can break by our own hands. We resist the help we desperately need. We spread ourselves too thin, too often.

We want to do it all and be it all. Not for martyrdom or accolades, but because it’s who we are – we are conquerors, we are survivors, we are lovers and healers and we want it all to be okay. And sometimes, if we are honest with ourselves, it’s not that we no longer want the dream we’d once envisioned, it’s that we don’t know how to let it go and accept the new one.

We cling to the beauty of that leaf, and when it withers away, we are so consumed by the Winter – the loss – that we fail to see the transformation taking place before us. We want to get to the other side without feeling the harshness of Winter or the hot desert as it burns and wears us away.

We push it aside. We cover our ears. We hum a tune so loud we hope it drowns all the noise; sometimes, it drowns us before we can drown it. We punish ourselves repeatedly for what we cannot control.

And then, God reminds us of his faithfulness. He restores us.

We seldom become the people that we are all on our own. We become those people through love and encouragement along the way. We become those people because of those that open their arms and hearts to us when we are finding our way in the darkness. They may not have the map, but they have the compass. They don’t let us forget that Spring will come and with it, the promise – the gift – of renewed hope and faith.

Why I Won’t Light It Up Blue

On this day when everyone lights it up blue and has autism on their mind, I would just like to say that as a parent of a child with autism, all I want in this world is to understand my son and for others to try to as well.

Only a few short weeks ago, I could not say the word autism without a lump growing in my throat and my eyes welling with tears. In the early days after diagnosis, I couldn’t even so much as utter “Hi, my name is Laurel and I am calling regarding services for my son who was diagnosed with autism,” without totally breaking down while calling providers. Sometimes I couldn’t even make it past my own name and at times, had to hang up and call back later, only to cry again.

While I already knew for many months with everything that was in me, there was nothing that could ever truly prepare me to hear the words falling from the doctor’s lips. And fall they did…those words hitting the walls of my heart like concrete blocks, leaving jagged chunks of what I thought would be, could be, scattered along a path I had laid for my family. For my son.

Since that day, I’ve cried just about every day. Sometimes from sadness, sometimes anger, a lot of frustration, and most often, because of love. You see, amidst the fallen pieces – big dreams, hopes, the vivid picture I could not only see, but feel, like the strokes left behind from the artist’s brush, the texture was smooth in some places and rougher in others. Like the tiny particles remaining from that concrete rock that collided with my version of reality, they were now imbedded in the colors of my painting. As I traced the dream with my fingers I could feel smooth, then bumpy, rough…and I knew this would be forever.

This authentic and lucid dream I had was once again, not mine. It had never been mine to paint – the canvas was surely mine, but the colors and texture were not up to me to choose. I couldn’t ever have imagined the kaleidoscope that would follow…

I’d hoped for once, my maternal instinct had failed me. That the doctor would tell me I was over reacting, that every 3 year old spends incessant amounts of time organizing and perfecting, lining up trains, cars, magnets on a refrigerator. That leaving the house or transitioning activities is a challenge for any toddler. But she didn’t…

After a 3 hour observation and evaluation and an encyclopedias worth of paperwork, our entire lives, our complete history on display, I saw it in her eyes. I knew what she was about to deliver. She did it in the kindest and gentlest way, and I will forever be grateful for her compassion and empathy.

She provided us with some papers, said we were doing all the right things already, told us we could contact her at any time for any thing, gave me the warmest hug, and sent us on our way. We decided to keep it to ourselves for a while longer; we just weren’t ready to tell others.

I think some of that was fear talking. He is still little and maybe with enough therapy we could help him be as neurotypical as possible. “Neurotypical” is the politically correct word for “normal.” I just could not get past the “autism” word. I was stuck and scared.

My brain understood, but my heart hadn’t yet caught up. Even over a years worth of mother’s intuition did not prepare me. Why was this at once, so hard and yet so easy. There was overwhelming relief because – finally! Finally, we were not living this alone; it wasn’t manifested in some version of our own reality. It was real.

It’s been very real.

I’ve gotten him all the help I can find. Speech therapy, more occupational therapy, ABA therapy. I read and read and read, learning everything I possibly can about autism and sensory processing disorder. I joined online support groups where I’ve met some amazing mothers and no longer feel so alone and lost. There are friends old and new who became my angels, and they know who they are – without them, I would have crumbled. I don’t believe most people have even the slightest inkling what autism families go through – I didn’t. Add in additional diagnoses and medical challenges, and it is literally all-consuming in every sense. All day. Every day.

Initially, we were afraid to tell family and friends because we just didn’t want our little boy treated differently or analyzed. This was fear talking and I know now that those fears would have never happened. So we relied on each other for support, but as a scared mom I needed so much more, and found it in my online autism community and among amazing medical professionals I now so thankfully and lovingly call, friends.

You see, when you have a child with autism your biggest fear is the future. Not so much the near future but the distant future. Will he go to college or will he need to be cared for at home. Will he speak or will he be nonverbal forever. Will he ever have a real friend. Please Lord, will he ever call me “mom” or say “I love you” and on his own. Will he learn to point. Will he be potty trained. There’s so much more…

Just because a child does not speak, doesn’t mean they can’t communicate. Just because they don’t make eye contact, doesn’t mean they aren’t listening. If they don’t want to be touched, it doesn’t mean they are incapable of love. If they need to spin, yell, hum – it’s because it feels good, it serves a need – and it’s okay.

Autism is a spectrum disorder. A person with autism can be low on the spectrum (high functioning) meaning they can communicate and have some challenges but with time can usually manage them and live a normal life. Being high on the spectrum (low functioning) is well, the opposite usually. They are usually nonverbal individuals who could possibly need care for the rest of their lives.

It’s hard to define the autism spectrum. As the saying goes, when you meet one person with autism you meet ONE person with autism. They are all different and all extraordinary – ALL of them. They all have different challenges and strengths. Not one person with autism is the same. Please remember that. Everyone – typical or not – is their own unique masterpiece, crafted by His hand.

If I could put Luke on a pedestal, I would. He brings joy to every person he touches. He is just the most beautiful gift God has ever given me and I am so proud to be his mother. I shed many, many tears of joy because of him. My life is richer, relationships more transparent. As if all we had already been through didn’t cause me to recognize life’s value, any remaining scales have fallen from my eyes.

My canvas I thought, was already perfect. What I didn’t see was the full spectrum of colors and how the mixing, the texture, the unevenness, would be the very beauty defining our lives together. Paint poured out like tears flowing, the canvas takes new life.

The white light of soul, prism refracts. A spectrum – a beautiful kaleidoscope of vibrant color – is born. To me, Luke, and every person with autism or a “disability”, is the essence of purest white light refracted. Where life is not distorted, but clarified and transformed. It is innocence and purity, intrinsic honesty and beauty. But to see it, you must surrender your canvas to the Artist’s brush. You must trust. You must have faith.

April is Autism awareness month but for our family, it’s every day. Every day is a chance to educate others because we live in a time where it is estimated that 1 out of 68 children in this country are diagnosed with Autism and the numbers are as high as 1 in 34 in some parts of the country. I think most people know a child or person with autism. If you don’t, the day you do, smile and feel blessed, because you have met the very essence of spirit walking this earth.

I will not light it up blue because to me, autism is a beautiful kaleidoscope of constantly changing and overlapping colors.

Learn what autism really is and how you can involve children and adults with autism in your every day lives. Teach your children about autism. They will be encountering many peers on the spectrum, all different, but all extraordinary. Teach them all this, so they can become adults that will be tolerant of the changing world around them.

Okay Together

“You’re my best friend, Mommy.”

Yes, Baby.

There’s so much emotion attached to his statement. If I were the mother of a typical 3 year old, I wonder if I’d feel differently about his words. The fact is, I am his best friend (his mother, his OT, PT, speech therapist, his nurse, his advocate) and forever his biggest fan.

But as much as this melts my heart to know my sweet boy sees me this way, it also stings. It stings because I know it’s true. He doesn’t have friends in the traditional sense and I can’t help but wonder if he ever will.

I know what you’re thinking – he’s THREE! Stop overthinking!

We are early in our journey and there’s so much progress to be made. Yet still…my heart cannot help but ache and long for him to know true acceptance from someone other than his mother. I pray this every day as I drop him at preschool…

“Please, Lord. Give him a friend. Give him comfort and strength. Watch over him.”

There is so much we don’t know – can’t know – until it all unfolds. That’s hard for me. Really hard. I want to know if he’ll ever be able to comfortably associate with peers. I want to know if he will ever initiate instead of always needing an adult to prompt.

Some of the fiercest battles we fight as special needs parents are the ones inside our own hearts. We battle between fact and what we hope and pray will be. We do our best to stay strong and positive and sometimes…sometimes it just becomes too much. In spite of our best efforts, we crumble. Under all the pressures and demands, necessary and self-imposed, we succumb to the battle, knees falling to the rocky ground, and we plead with all that is in us to just make it all okay.

“Please, Lord, let it all, always be okay.”

And when we finally pick ourselves up, brushing off the fear, anxiety, and yes, sometimes anger, we see that our knees bear the scars of having fallen countless times before and yet still, we rise. We rise to do it all again and again because these precious souls have been entrusted to our care. And for as many times as we fall and hurt, they hurt just as much and more – and still, THEY rise.

Our babies fight no matter what. They don’t give up, they don’t complain, they march onward – and so must we.

I would battle thousands of lifetimes to be the mother of the son I have right now. He was meant to be mine, of this I am certain. Our souls have been, and always will be, eternally intertwined.

So yes, Baby. I am your best friend. Today, tomorrow, through every sting and every scar. Together, it will be okay. Together we are okay.