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.

 

 

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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.

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.

Enough

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“Do you know how special you are? Do you know how much Mommy loves you?”

As I drew him into my chest, nestled tightly in my arms, I whispered in his ear. I tickled him under the arm, he giggled and squirmed, trying to toddle away – I only had his attention for a few seconds. I snuck a quick kiss on the bridge of his nose, and just like that, he was off again.

He’s 18 months now and ready to take on his world. He’s curious, and yet, still cautious. He’s bold. He is relentless and can be impatient. He is determined. He is focused. His enthusiasm is unbridled and untainted. There is adventure waiting, and he’s on the cusp of the age where he knows it. He is sensitive. All animals – fictional or otherwise – are friends (or named, Greta), and are deserving of his hugs and kisses. His heart is real and it is big.

Growing up, I was a very sensitive child. I was the kid who wore her heart on her sleeve, apologized to my animals, made sure no one felt left out. I was the girl who sat with the lonely kid because I couldn’t, not. I treated others – including inanimate objects – with the sensitivity and attention I so desperately craved. I learned early on the world was not as soft as my stuffed animals, and not everyone would treat me in the same way.

I was young, I can’t recall the exact age, but I can pinpoint one of my very first moments of rejection. I wanted to climb in to my mother’s lap. I wanted to snuggle. To feel secure, to feel safe. I was rejected. It was “too hot” or she was “too busy” or I was “too heavy”. Transition to pre-teen years when I was self-conscious, even more sensitive. My self-esteem was a seesaw that in a moment, could plummet to the unforgiving asphalt beneath. I was mocked by my own mother for doing my hair, painting my nails – for what I now realize, was taking a little pride in my physical self. In those moments, teetering low, I prayed the black abyss would swallow me whole. I was devastated. I spent most of my childhood being a social chameleon just to get the acceptance I so deeply wanted. Needed.

I eventually learned to laugh it all off – rejection. My skin grew thicker, my emotions buried deeper, only to be unlocked in later years. I have grown and learned since I was a child. I realized I could live like a victim, I could continue to love in spite of it all, or I could become cynical. My choice vacillated between #2 and #3.

I wanted to be everyone’s everything. I wanted to be the favorite. I wanted to be the pretty one. I wanted to be the thin one. I wanted to be the popular one. I wanted to be the athletic one. I wanted to be the smart one. I wanted to be the creative one. I wanted to be the funny one. I wanted to be the trusted friend. I wanted to be everything – to be it all. The people pleaser – THAT’S ME! I wanted to be loved. I soon realized that in order to have everyone like me, I had to be many things, and it was exhausting. To some, I was too nice, so I needed to be tougher. To others I was too aloof, so I needed to be more sociable. It left me realizing that I no longer knew who I was.

It’s taken time and experience for me to realize not everyone will like me – and that’s okay. I will hold myself to a standard of grace, not perfection.

I am certain as I continue this blog and my honest writing, I may have friends who depart from my life. And I also know, I will gain new ones. Before I started this blog I worried constantly about putting myself out there, and in my inevitable style, made a pro and con list. It was PACKED with “what ifs.” What if someone doesn’t like the real me? What if someone thinks I’m weird? What if I offend someone? What if I’m doing life all wrong? What if someone takes what I write the wrong way? WHAT IF?! And in the pro column, scribbled all by its lonesome, “why not now.”

The time to be real is now. To be authentically and unapologetically, YOU.

Although I occasionally still get stuck on that seesaw and can get caught up in the cycle, I know I cannot be everyone’s everything. I can’t be everyone’s favorite, everyone’s friend. People will love me and people will hate me. People will judge me and people will accept me. Take me or leave me, people will be people and my purpose in this life is not to win them over.

We were not placed on this earth for everyone to like us. We are here to be true to the individual purposes we have been given.

I know one of my purposes: to give all the love I have to a brave and beautiful boy with innocence in his eyes and a spirit bright as the sun. I know I am here to give him myself. My time, my energy, my hugs, my kisses. To put all my heart into raising him, nurturing him, helping him grow into everything he can be. I can’t be a favorite to everyone, but I can be his favorite. Every time I put down the phone, the to-do lists, toss out the worry, the fears. Every time I scoop his 25 pound body into my arms and smell his hair. Every time I lay on the floor and let him crawl all over me. Every time I make his day by taking him to the park for a run, act silly and [so badly] dance around the room to watch him laugh. Every time I play cars, roll the ball, and scream and yell just because we can. Every time I rock him and sing our special song. Every moment I am consistent and faithful in following through on my promises to him, and to raising him with all the best that is in me – that is enough. Every hour. Every day. Every week. That is why I am here.

I have a little boy who needs to know that being himself is more than enough. And when the day comes when the world reveals its true colors and his heart is bruised, I will not let it harden. I will tell him,

“Do you know how special you are? Do you know how much I love you? Always be you, no matter what. You are more than enough. Not everyone will like you, and that’s okay. You are loved. You are always loved.”

We are all enough. You are enough. I am enough. Quirks, flaws, highest highs and lowest lows, you are enough. Don’t you ever change. You are loved. Always loved.

Motherhood – Part 2

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This piece first appeared on the St. Christopher’s Hospital for Children website as a 3-part blog series.

http://stchrishospital.blogspot.com/2015/05/guest-blogger-laurel-youse-mother-of.html

GUEST BLOGGER: Laurel Youse

Monday, May 11, 2015 – Part 2: Motherhood

Mothers dig deep. We open ourselves to love in spite of the cost, in spite of the unknown. We harbor great burdens, hide sorrows only our hearts can know, and we relish in great victories and amazing joys. We cling to hope that is steadfast and sturdy and cherish the moments when a tiny, smiling face, an intentional and knowing glance, the tight squeeze from a fragile hand, can cast all doubt away. We find strength often times not of this world. We find the power to love unconditionally and without reserve. We find faith. Or maybe it finds us.

In the months and year that would follow, our little growing family would find itself faced with multiple challenges – a diagnosis of HELLP Syndrome for me, requiring early and immediate delivery of our Luke, heart surgery at St. Christopher’s Hospital for Children for Luke and the diagnosis of a kidney defect, ongoing physical and occupational therapies, and always more tests and procedures. And in the midst of all this – this path I certainly did not choose – I have found joy. Yes. Beautiful, bountiful joy.

While life can still be scary and uncertain, and although the original dreams I once had are gone, they have been replaced with better ones. Brighter ones.  More meaningful ones. The plans I made – expectations of the perfect birth, hearing his first cry, snuggling my newborn on my chest, nursing my son – those things still hurt a little. Some days, they hurt a lot. Maybe they always will. Developmental milestones – I will never take for granted a spoken word and no step will ever be considered ordinary. Yet, I’ve had great privilege – the honor – to know my child more intimately than most. I’ve sat at his isolette for hours, memorizing every feature, every crease and line. I’ve fought for him, prayed for him, whispered into his ear how loved he is, how his mommy is always there. I taught him how to drink from a bottle to rid him of that dang NG! I’ve shuffled bunches of machines and tubes and wires just to hold my baby only to have the pulse ox alarm with every slight movement. I have navigated my way through medical jargon and cared for my child in ways that are natural and ways that are very unnatural. I have learned him like the back of my hand. I have seen his heart from the inside. And his heart – his beautiful, perfect heart – was broken so that mine would one day heal.

This year – MOTHERHOOD – has taught me FAITH, JOY, PATIENCE, LOVE…and even more FAITH.

Luke’s heart taught me how to use my own: To be present in all the moments of life because tomorrow is never promised to any of us. So laugh. Cry. Give sloppy, wet kisses and squeezy hugs. Be positive – even when it’s hard and you think you can’t; dig deep. Give freely – your time and your love. Be not only a pillar, but an example of strength for your family. If you are reading this you have likely been touched by a child and although our journeys may be different, in many ways they are much the same. The story in your heart is the universal story of mothers. A mother’s heart always knows, always believes, and always whispers hope. Each one of our children has been born to us of perfect love and in that love we too, have been reborn as Mothers.

There is faith. There is joy. There is kindness. There is purpose in pain – we have to find it. And when we do, embrace it – as tightly and lovingly as a mother embraces her child. Nurture it and watch beautiful, bountiful life flourish. The gift, the blessing, of motherhood.