Reach for the light

Community.

This thing we build on love, on mutual understanding, on acceptance, on camaraderie, and on empathy birthed from hardships.

Life is so breathtakingly beautiful. And in its beauty, it can also be very hard at times.

Life’s about holding the light for one another.

It’s about clinging to hope and faith.

It’s about clinging to love.

And it’s about reaching out our hands and uniting.

This is how strangers become friends, and this is how we remember we are never, ever alone.

Reach for the light.

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”.

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.

❤️💙

The Truth Of How To Be Strong

As I scoured the preschool floor for my missing earring, I heard her voice…”You are so amazing. I don’t know how you do it every day. You’re so strong. Like a supermom.”


Preschool drop off has never really been easy and lately, we are truly struggling – in many areas and ways. This particular instance involved quite a bit of physical and mental struggle and it took a lot reassurance, use of our picture schedule and storytelling. It took me sitting on the floor, face to face and heart to heart as I squeezed him so tightly I could feel it beating, my lips touching his soft little ear as I whispered our mantra of sorts, “You’re safe. You will have the best day ever. Mommy will come back after nap and snack. I always come back. I love you.”

As I stood up, brushing from my sweaty face, pieces of hair that had been yanked from the messy bun I’d slept in the night before, our eyes met. She’d seen me drop him off countless times. She’s seen us on the verge of meltdowns, the panic in his eyes when he realized his coat hook and cubby had moved location.

We never really spoke before this day, other than the customary etiquette that often ensues as parents go about the weekday ritual of delivering their children to daycare and preschool before heading to work. And largely, that’s because I’m usually always on the verge of tears as I leave the building. I want to say more, but I can’t. I need to hold it together until the car…God just let me make it to the damn car in time.

So many times, mothers of children with special needs are praised for their strength, perseverance and determination in raising their children. While it’s great being reminded that you’re a good parent, there is something inherently uncomfortable when you are told you are strong for raising your child that has special needs. When people share these sentiments, I know they mean no harm. If anyone reading has said this to me – or a parent raising a child with special needs – I understand it all comes from a good place. However, deep within me there is such an unsettled feeling that while the world around me sees me as this fearless, caped supermom, I know that on the inside I am insecure, scared, and every day, so completely overwhelmed by the road I am on.

When someone tells me I’m strong, there is a part of me that wants to scream at the top of my lungs how utterly weak and defeated I feel. I often nod my head, take the compliment, and know most parents in my situation likely feel that their strength is NOT an option. When you have a child that is medically fragile, autistic, developmentally delayed, or intellectually disabled, the only person that can advocate and fight for that child is the parent. There are only two choices (1) you take on the fight (2) you abandon your child. Most parents could never conceive of leaving their child, and therefore the only choice they have is to put on their big kid pants and plough forward, full steam – just like Thomas the tank engine. 

That particular morning at drop-off, and every time I hear it, the most difficult part of being told that I’m strong is that I feel like it means I’m not allowed to be weak or have moments where I don’t feel confident or happy. It feels like a lie. Most days it feels like I have to put on a brave face, but in reality, all I want to do is hide in my closet and cry on the floor – and I have. I never feel like I can be scared, frustrated, overwhelmed or sad because I have to be strong for my child. Over the past few months, I’ve come to the slow realization that I don’t have to be strong all the time. It’s getting too hard…

To all the moms in this special needs community, you certainly don’t need it, but you have permission to have a bad day…to cry…to scream…and to feel hopeless – and not feel guilty for any of it. We cannot always hold it all together. If we don’t stop to feel our emotions, we will only find ways to destroy ourselves.

The world sees us as superheroes for our children, and I imagine they believe we are cloaked in our vibrant capes as we dash to various appointments. But do you want to know the truth? The truth is that no single person is capable of being a superhero all the time. It’s natural to feel weak, to feel sad, and to grieve the life you thought you’d have…and the one you are now living. It doesn’t mean you are ungrateful or love your child any less.

The next time someone tells you how strong you are and how much they admire the color of your cape and your ability to be supermom, I challenge you to be vulnerable and messy with the people in your life. Tell them you don’t always feel strong. Tell them there are days you feel like it’s absolutely impossible to deal with any more stress…and that you just need someone to let you not be strong…for just a minute.

When I have forced myself to get honest with my friends and family, I have found that this is where I find my real strength. I feel their support as they listen to all my frustrations and sadness. We can’t keep it all in, all the time.

I encourage you to NOT be strong every single day. I’m working on it, and you should too. Your sanity depends on your ability to process all these feelings. Once you’ve had a chance to feel weak, it is only then, you will know the truth of how to be strong.

Rescue Patrol

He fought the tears and tried to be strong, anxiously wringing his not so chubby – but still little – almost 4 year old hands, until they were red.

I searched him if only for just a glimmer of understanding…begged him to use his words, to tell me – even one word – how he felt.

And then finally, a quiver in his soft, small voice, sounding as if it carried with it the death weight caused by all the archers tools, it came…

”shaky…it makes my inside…shaky…Mommy”. 

There’s no on/off switch when it comes to parenting. You’re 100% in, or you’re not. Some days that means being the rescue patrol to your little darling when therapies don’t go as planned. 

Having any time to myself is an extreme rarity, as I’m sure many moms can relate. Today was supposed to be that day for me…to relax, decorate, zone out while cooking a delicious meal. Those things won’t happen. Not today.

And yet it’s okay.

Because some days – actually, most days – we don’t even get to scratch the surface of what we had planned.

Some days life isn’t okay.

And in those uncertain moments of heartbreak and suffering, we must seek to understand. We must do our best to accept and sit with the discomfort of all that is, knowing that it’s okay for every soul, to not be okay sometimes.

And so we sit, silent and shaking, holding onto each other, to love.

Holding fast to the magnificent power that comes when parenting through the pain. 

When I Called

I met God for the first time when I was six years old. I was riding in my grandmother’s car on the way to church. It was a warm and humid summer morning, windows down, the smell of farm fresh air blowing through the old sedan, my legs sticking to the vinyl seat, and unruly pieces of messy ponytail tickling my nose as the winds blew. And we met.
I met God again years later when I was twenty-two, standing in the cold autumn rain. Thick, heavy gray clouds blanketed the sky, as I stared at a white plaster house that was never a home, a piece of me forever gone, forever longed for, yet never mine to have had. And we met. Kind of the same way you meet a stranger in line at a coffee shop. Except that He wasn’t a stranger. He was someone I had known my whole life.
I met Samina for the first time when I was thirty-eight years old. It was a beautifully gorgeous day in August. And we met. Not in the way I would have wanted, because it meant my son would have a kidney defect, and she would become his ever vigilant doctor. Yet still, it felt kind of the same way you meet one of your oldest friends from grade school. Except that she wasn’t really an old friend. She was someone I had only just met.

My relationship with God can be complicated at times. Not because it actually is…but rather, because I’m a part of it, and in turn, complexity ensues. I still feel very immature in my faith, and as a result, I often find myself fighting with God. I still want control. I still want answers. I still want reassurance that everything will be okay. But He is patient with me and remains by my side even when I don’t make it very easy to love me. I can’t see Him…but I know that He is there.

My relationship with Samina is never complicated. And realistically, you would think that it should be. We live a distance from each other. We are busy with family and work and seldom have moments to keep in touch. And yet we do. Over time and distance, we are building something. A friendship that is one of the safest places in the world to me. And while I don’t often get to see her as much as I would like…I always know that she is there.

This past year has been horribly painful for me. I’ve struggled with the clarity of friendship – to know what is real and what is illusion. I’ve been lost in the thick and deep woods of how things are, and how I would like them to be. I imagined the months would have been kinder to my soul. That I might have been kinder to my soul. 

I’ve struggled through what felt like a hurricane of my own design. Anxiety. Worry. Doubt. Fear. I struggled to walk away from the lies and walk towards a better truth. I had struggled with the fears that I may never get to be who God wanted me to be…that I may never get to be who God intended me to be. That I would never be enough, do enough. I had struggled with the idea that my fear may forever hold me back. I had struggled to trust…to let go…to surrender. And in essence, what this really meant…was that I had struggled with God. And it had left me feeling very far from Him at times.

It had made me wonder if He forgot about me. If He stopped hearing my prayers for understanding. If He stopped feeling my pain. This, more than anything, had been enough to rip me apart.

Just as my grandmother drove the car down that country road all those years ago, dust rising in the air, leaving the view behind me nothing more than a cloud in the distance – not unlike many of the months that had recently passed by. When I got out of the car this time – concealed circles under my eyes, a physical ache and weariness in my body, the weight of seeming defeat on my shoulders, and all the pain in my heart – it wasn’t more than a few minutes before it happened…before the sting of all the hurts I’d buried deep, would press at the surface, and tears started pooling, streaming…before the desperation tried to break loose.

And there she was – Samina. My beautiful friend who – for what totals hours now – has let me cry and share my heart’s deepest fears, deepest longings. My beautiful friend who – while puddles form at my feet – helps hold the shattered pieces of my broken heart in the palm of her hands. My beautiful friend who – speaks words of love and truth that touch my soul. My beautiful friend who – met me right where I was, in the cloud of dust and hazy darkness, loves me in all my mess – came to my rescue.

When I think of all this…all that has transpired on a journey I never wanted to take, 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 this life was never meant to be taken alone. I am reminded that when Samina embraced the floodgates of my agony…it wasn’t just Samina. It was God radiating through Samina. It was our God whispering, “See…I’m here. I hear you. I ache for you. And you’re never alone.”

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

When I think upon all this, I will forever be reminded of one of the most beautifully vulnerable moments of my life. A moment when the clouds parted and the light came pouring through. A moment when I called…and He answered.

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.

To The Mom Stressed and Worried About Her Child’s Health

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Dear worried and stressed Mom,

I see you. I see you smiling and hustling and bustling through life. Going to work, working from home, in the grocery store, running the roads, the parks, stroller in toe. Happiness and laughter, but with a slight twist of hesitation. I see the shadows lurking in the corners, ready to stomp across the sunshine in your eyes. The imminent gray that grows and swells, and in a moment, will envelope your happy – if you let it.

I see you going about your day, responsibilities and regrets. Worries if you are spending enough quality time with him. Phone calls to doctors and therapists can wait – but they can’t…I see you pulled and stretched, molded and shaped in directions of choice and directions of fear. Like warm, pulled putty in a toddler’s hands, you’re thin, drooping and sagging. Good, bad, insensitive and well-meaning remarks – they all cling to you, lost in the sticky sea of your soul, they become a part of you. Don’t let them become you.

I see you late at night, wearily standing at your kitchen counter, drawing weekly meds. You wait until he sleeps, for this disease has robbed enough of your time together – you will give no more. While most have a junk drawer, yours is chock full of medical supplies and drug interaction pamphlets. I know what’s in your head – with every pull of the plunger, filling a vial higher and higher, flick of the syringe – this isn’t fair.

Doing this isn’t fair. Being here isn’t fair. This life is sometimes so unfair. So full of hurt you can’t explain unless to another who has also been there. You hurt for your child, although they know no different – you do. And you weep inside and out for what they must endure. You weep because you feel helpless, powerless and you must watch them endure.

I see the pain behind the smile. It lurks in the words of positivity you often speak. You can’t fool me. I know you. I know your scared, overflowing, joyful and broken heart. I know it has no bottom for that dear one you adore. I know it stings. I know it’s sore.

Momma, I feel you. I feel your heartaches, your nausea, your headaches, your sleepless nights, the hesitation in your step as you drag yourself forward because –  THERE. IS. NO. OTHER. WAY. I feel the desperation in your longing – the day you pray will come – when worry of health and sickness will wither away, wash away. Please – take all this away.

I hear your heart stop when the doctor enters the room with results. When a fever is never just a fever, a cough is always something more, weekly therapies, visits to specialists and the ER are your normal. I know the staggering halt that encompasses your entire being. When the world stops revolving and begins spinning, spinning, spinning, out of your control. I know you want to make it stop.

I smell the sweet victory when you can overcome that fear – fight the foe with all that is in you, and then nestle tightly in the quiet moments where the intoxicating scent of your child’s head, the stroke of your finger along his soft and fleshy cheek, holding tiny feet in the palm of your hand, is the elixir of all that is right, and good enough, to always bring you back. Back to carefree, worry-free, stress-free. Even if only for a little while.

I see you there. Soaking in every. precious. moment. Because we know too well, Momma, another one of these is never guaranteed.

I see you playing with him, chasing, tickling, giggling, loving. Wholehearted love. Fierce love. Love that defies anything this messed up earth could bring. A love that fights, hopes, and a love that stings like no other when you find you are helpless to the illnesses and diseases beyond your control.

I see you struggling to keep it all together, Momma. Fighting back the tears, the lump that grows in your throat that you never let out – can’t let out – are afraid to let out. I see you change the station because you simply cannot listen to “that” song – not today, not now. Maybe not ever. I see you congratulate a new mom, and I also see you cry in secret as the pain of your own losses, missed opportunities and anger over a cruel disease, overtake you. I know the guilt you will feel – for everything. For being too much, too little, not enough, wanting more, having more than you believe you deserve. For wishing your child never had to endure life living this fear. That you, wouldn’t have to live this fear.

I know that sometimes when you cry it comes out of your eyes, but sometimes, many times, it just stays in your soul.

I see you strong, Momma. I see you now. I’ve seen you in the past and I know I will see you again. Please listen to me. Read my words. Take my words. You are stronger than you know. You have more fire and feist than a pen of wild bulls, because this is your baby – your heart, your soul. When you feel weak and fragile, like you can’t even make it to your pillow – trust. With all that is in you, trust, and keep your faith close. Power comes in times like these. Strength comes in times like these – where in that brave, costly, intentional action of the heart, pure love wholly lives.

I know you, Momma. I hear you and I see you, and we never need words to speak what we know of each other in our hearts. Your worry is my worry. Your fear is my fear. My strength is your strength – so take it. When you are running low and weary from the fight, press on. When your chest is heavy and you can’t breathe, see the beauty in front of you, pour your heart into the joy that is before you. Hold that baby tight and carry him through…and I will carry you.

Peace be still, Momma. Peace be still.

Purpose

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I think a lot about my purpose now. It was somewhat clear before, but not as deep. Important, but not nearly as moving. I was a wife, engaged in and climbing my way in a demanding, full-time career. I was a loyal friend, family member and volunteer. I was balancing it all nicely – squeezing in everything I needed to do along with everything I wanted to personally achieve. In retrospect, my stress was low – after what I have now experienced and continue to face.

When Luke was diagnosed with a congenital heart defect, my thoughts and emotions shifted. Once he was born, my entire purpose shifted. My world was gone. Laurel was gone. Everything I had been working for and towards, was placed on the back burner. In one instant, all those things were gone. My purpose transformed to heart and drug researcher, sacrificial mother, and fighter.

And now? Where am I after most of the dust has settled? Who am I? What will I do with what I have learned – am learning – from this beautiful and scary journey?

My brain is the same – it desires inquiry, craves to-do lists and work, fulfillment, challenge, and success.

My perspective is changed – it is rare – I am quicker to judge in some ways and I am more accepting in most. I do not tolerate BS – at all. I don’t care about most trivial things.

My eyes are more clear – seeing into hearts, seeing pain, strugglers alongside me, individuals fighting battles each day. I see what matters – joy, hope, heartache, love, faith, and miracles.

Then there’s my heart…my heart is so not the same. In some ways it is blacker, it has been broken and pieced back together, stronger than it ever was before. It has been shocked, tormented, tangled and tested, and has been made more aware. It has been tuned in to the good stuff in this life – the magic, the miracles – that life can bring. It feels the pain of others more tenderly and most often doesn’t have need for words. It craves the beauty that my son brings to my life.

And so now, still enmeshed in this medical journey, I think “What’s next for me?” How does a 39-year-old mother progress after, and while going through, what is a transformation of my very core? What do the next years mean for me? Where should my personal path take me?

My first desire and thought each morning before my feet even hit the floor is to be the most engaged and loving momma to my precious boy and to show my husband how much I love him. In spite of all the demands that challenge and test us, these two beings are my world, my everything. Most days this is simple – those are my goals. Then I ponder the bigger picture – how will I use my journey? What purpose, aside from my own lessons, can be gained and given to others. I am traveling this road, I have to do something with it.

I hope that I live my life as example of faith, joy, love, and determination, but I feel at times it is not enough. And so I turn to writing this blog to sort out the thoughts and make sense of the experiences and lessons learned. I am reminded that this journey really isn’t about me, nor is it about Luke. It is about what HE is doing in our lives – the testimony God began in our story and the ribbons of hope He is weaving throughout our journey of faith.

Purpose – for now mine is to give encouragement, perhaps change the heart of someone sharing a similar journey. To be an example of dwelling in the precious moments with your babies, holding their cheeks softly to yours, looking closely at their little profiles and wide eyes as they discover the world around them, and embrace their magic. To recognize that there are strugglers all around you – fighting things you cannot see, or imagine – you may even be one of them. Take to heart that you cannot ever plan for what is to come, and one day you may be that struggling soul, so you soak up today and all of its blessings.

You find your purpose where the tethers of this mortal life no longer bind you and your heart is free to take shape and soar with compassion and love and wherein His grace, is always enough.