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.

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 Dance With CHD

June 12, 2013

Today I heard your heartbeat for the very first time. My own heart fluttered in anticipation of all the beautiful days to come. What will you look like? Sound like? How amazing will it feel to hold you to my breast, comfort you, keep you safe…Your heart was beating so rapidly and loud. The doctor said your heart is very strong. It was the most beautiful sound I’ve ever heard.

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September 12, 2013

You’re a BOY! I knew it! I felt it with every part of me…and I also felt for weeks, that there was something wrong. The ultrasound technician was hovering too long today. She stopped talking. She was intent and focused. Repeated freezing of the screen, contrasting red and blue…The doctor explained there is something significantly wrong with your heart. He didn’t give much detail, only that we will need further testing in the next few weeks.

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September 24, 2013

 You have coarctation of the aorta. We are being referred to St. Christopher’s Hospital for Children. Oh – and we’re not supposed to Google…I’ll behave – for now. Because maybe, just maybe, if I don’t Google, then it’s not real. There’s a chance this could all be a mistake…some blip on the screen that was misread. This is one time when I pray my intuition is completely wrong.

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October 2, 2013

We went to St. Christopher’s today for a very detailed – and long – echocardiogram. I didn’t want to be there. I hated that I was there. I hated the reason. Despite what I felt in my soul, I prayed they had it all wrong. These doctors would apologize for us having had to drive all this way for nothing but a mistake on an echo. We would stop for lunch on the way home, shop for more nursery items…that’s what I prayed. That’s what I knew deep in my soul, would never happen. Life wouldn’t be the same after today. There’s no un-telling of a truth…Right there, in black and white and gray…contrasts of red and blue…it was all laid out. Your defect was critical…I was critically devastated. “Immediate surgery”…I made it through the consultation, drawings of your heart, questions of whether I’d ever taken any medications while pregnant, family history…I had few tears…I was holding it together. Until I wasn’t…Until I made it to the parking deck and clung to the railing as I sobbed, unable to take another step. As if climbing the stairs would signify the uphill battle we were now about to face.

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June 20, 2017

We’ve been facing battles of all kinds for the better part of nearly 4 years. And on this, the eve of my sweet Luke’s yearly echo, I am yet again reminded that this heart journey never ends. It’s sting lasts long after the scars begin to fade, and like a houseguest who’s outworn their welcome, it lurks in hidden chambers, refusing to ever completely leave. It’s like a lost soul, inhabiting it’s host…never fully here, never fully there…if we are fortunate, it will stay at rest, find peace.

Peace.

I’d like to say I’ve made peace, found peace. But I’ve not…this dance with a disease I can’t see brings tremendous burden…and it’s not Luke’s heart that is the burden. It’s my dance. It’s my own feet that get in the way…I stumble, I trip. I’m falling all over…

It’s my own heart, my own fears, my own anxiety, that are the real uphill battles. It’s in the 2:00 AM wakings – 3 years later – to check on him. It’s in the visual reminders of arterial line scars, cut down scars on his neck, arms, groin, feet…and his back.

The yearly echo is a reminder of how far we’ve come and where we’ve been. It’s a yearly dose of reality slapped square in the face. I wish I could say I am beyond the anxiety and the fear that this day brings…but I’m not. I clumsily continue the dance, stumbling with the ghosts. They can’t ever leave because they are the truth of the past. They hold all that was ever lost, all that has ever been gained, and all that is yet to come. I fear to let them go, I will lose footing on sacred ground. That I will forget, that in great pain and grief, the dance must continue. And I understand that while I may dance with peace and acceptance for a song or two, ultimately, my partners will change – often. It’s the impermanent nature, the uncertainty, of CHD.

 

 

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.