Father’s Day

I think most pregnant women throughout their pregnancy think a ton about how their husband will be as a father. I know I did. We’ve always had a very equal partnership and I wondered if that would continue as we grew our family, since I had heard the opposite from so many other women.

Scott goes above and beyond for our son every day. I don’t know a dad who does more for his family and though I try not to get too braggy about all he does for us, I’m always making an effort to thank him and tell him how much I appreciate all he does.

In light of Father’s Day, if there is one day of the year that I am going to brag on my husband, this is it.

It started in the earliest days of my pregnancy. Him making sure I had enough sleep, proper nutrition, exercise, and foot massages – even though he can’t stand feet. It continued when we learned of Luke’s critical congenital heart defect – he researched, asked questions, became an expert on his son’s heart. I watched closely as he redid a bedroom for his unborn son – rebuilt a closet and chose paint color and decor. I saw his physical labor of love and determination to make things just right.

I remember the look on his face the night I was admitted to the hospital in a critical state, with the news Luke would have to be delivered early. He stayed by our side the entire weekend. He took care of us – of everything – when I was not even able to care for myself.

And when Luke arrived and was transported to St. Christopher’s Hospital for Children, he joined him immediately. He texted me photos and videos of our son for 3 days because he knew how hard I was struggling, having to be separated from them. I remember the phone call he made to me, such pride and joy and love in his voice, telling me what a “cool little dude” he is and how I have to focus on getting better so I can join them soon.

Scott was Daddy, but he was also Mommy to Luke in the first few days when I could not be present. He changed our son’s very first diaper, gave him pacifiers, participated in his care, held him and sat and talked to him for hours on end, day and night.

We were supposed to be there together – partners, parents – yet he did it all alone, and he loved him enough for the both of us.

I remember how he researched breast milk and proceeded to inform me of all the many benefits and the differences between foremilk and hindmilk and I recall thinking to myself, “who IS this man?”

I so distinctly remember how on multiple occasions he helped hold my pumping parts in place because I did not have a hands-free bra and hadn’t anticipated that I would need to pump because I wanted to nurse. How he brought me hot compresses, bottles of water, made sure I ate every meal.

I remember how he was my biggest cheerleader and supporter during the toughest days…and how he loved Luke more than anything in this world and would do anything for him, including waking up multiple times a night to feed or comfort him. How he would never leave his side.

I remember the way Luke slept on his chest for hours and how he loved every second of it. I remember the way his face lit up the first time he said “da da,” ate his first solids, rolled over and crawled, and took his first step.

I could go on and on about how he helps so much around the house, cooks dinner for us most nights or does sweet things like wash my car or refill my gas tank when he notices it is low.

And how during the extremely stressful and scary times of caring for a child with multiple medical needs and never-ending diagnoses, tests and procedures, brings you to your knees, he is always there, kneeling right beside me or ready with strong and open arms to lift us all up.

I think the bottom line is that he cares so much about our family that it’s natural for him to be a wonderful partner and father. It’s a quality I very much admire in him and one that I know will set a good example for Luke as he grows and learns about love and relationships.

I feel so fortunate to be able to celebrate Scott on Father’s Day, taking a moment to acknowledge all of the things he does, big and small, and how they make our time together as a family so special. How he always makes us feel so very special and loved.

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The light in the lens

I was around the age of 7 when I came across a Minolta SR-2 camera that no longer worked. I spent hours with that black and silver device, snapping pretend photos and imagining a magnificent world beyond my small country town.

I envisioned all the splendor of my own unique prints – how the light would dance upon the fresh dew of a petal fallen too soon…swords of light protruding through outstretched tree limbs…fiery orange and red sunsets over mountain tops…the fog as it’s shadowy veil lifted over the meadow…

As I grew, so did my love of photography. I made sure to take classes in high school where I could process my film and manipulate the exposure and tone of my final piece. My passion for dodging and burning reflected my love of light pressing through dark space – something that would become my life’s theme.

Over the years I took many photos, spent hours experimenting in the darkroom taking great care to process my film and turn negatives into prints. I was enamored with the entire process from start to finish.

And then, as so often happens in life, I no longer made time for the thing I loved…

I left behind my camera for the ease of using a cell phone camera…but never left behind the passion for a perfect capture.

A few weeks ago, I ditched the phone camera for the real deal. I took myself, my boy, and that camera for a long, uninterrupted walk. We explored, we skimmed rocks, we jumped and splashed. We watched light peek through trees and pirouette across the water. We were calm, at peace, a mindless restfulness…

And that’s when I saw it – his light through a different lens…

The petal, seemingly fallen from it’s host too soon, graced by the kiss of dew…

Outstretched limbs, embracing, sheltering…

Fiery orange and red, burning boundless, a mother’s love…

The cloudy veil now lifted…

The passions and dreams of my childhood had taken human form and were now standing before me and I marveled at the parallels, the truths, the coming full circle.

He is my splendor, my greatest passion, my soul’s eternal work.

He is always the light pressing through my dark.

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Don’t let go…

I was going through some older photos and came across this one…and it reminded me…

It’s an ongoing process – this process of choosing to see the light.

Sometimes I find myself being piled beneath the layers of this life – the stress, the anxiety.

There will always be broken places, there will always be flaws, there will always be aches, always missing pieces.

But if I only look to those, I miss the beauty in front of me…the good, the joy, the hope, and the light that shines even in the darkest nights.

Wherever you are, whatever you are going through, don’t lose hope.

Do what you need to do to shift your focus, to find the light…and keep choosing it again and again…and no matter what, don’t let it go.

My dear autism and special needs parents

My dear autism and special needs parents:

On the days you feel your worst,

remember that you are beautiful

On the days you feel like you don’t know what you’re doing, know that you are brilliant

On the days you feel exhausted and can’t go any further, look back and see how far you’ve come

On the days you feel you can’t handle another battle,

look at your scars and be proud of the ones you’ve won

On the days you feel alone, know that you never are…

Even if you don’t think you can push through, you can – one step, one breath (one coffee, one set of eye pads) at a time💙

Sleep is so often something we don’t get as autism parents. Our kiddos can have a particularly challenging time falling or staying asleep.

For a while our challenge was the staying asleep. Now it’s BOTH falling asleep and staying asleep.

I often wonder how long it takes before the human body can’t take anymore…

I wonder how long I can function on such little sleep.

I wonder how my child can have so.much.energy. without having slept.

And then from somewhere, the strength keeps coming.

Moment by moment, breath by breath, I hold on to hope.

Hope turns the impossible into possible…and sometimes that’s all we need to get us through.

Hope for this moment, hope for this day. Hold on to hope my dear friends.

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.

Diagnosis Doesn’t Define Love

Here’s the thing – and it’s a big thing when the doctor says those words. When the details play over and over – and over again – in your mind for hours at time, days, weeks, years to come. Here is what I want you to know and believe with all of your heart. To lift yourself from the muddled depths of grief, sorrow, guilt and anger, you must first make room, and sit with it. Allow the tangled waves of despair to wash over you, in all of its rawness, embrace it.

And then, you stand.

A diagnosis explains and defines a lot of things, but never does it define love.

So love until you’re running dry, until your heart bursts. Love fully for every day with which you’ve been graced. Stand tall and rise with burning love ❤️

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.