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.

❤️💙

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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.

Moments

Over the weekend I was running errands with Luke in tow. Having skipped his nap in lieu of playing and squealing and being a toddler, he was resting his heavy head on my chest as we stood in line at the check out. His bustling little body and busy hands, now resting on my shoulder with a gentle grip on my shirt collar.

I had just been making arrangements for his next surgery prior to our stop at the store and was lost in thought running through mental notes of what still needed to be secured for his procedure. I was swaying back and forth, Luke slowing drifting in and out of sleep. I kissed his head, gave him a snuggling squeeze, and breathed him in. The woman in line behind me kindly leaned forward and very sweetly told me to make sure I enjoy these moments – that one day they will be gone too quickly.

I nodded my head and gave her a smile, thanked her, and proceeded to check out, all the while thinking to myself – “she doesn’t know”.

She doesn’t know how my heart yearned for him before he was ever conceived. She doesn’t know the absolute and sheer elation of confirming a pregnancy I thought would never happen. The 6 pregnancy tests I took on Mother’s Day morning (not to mention all the ones in days prior) and the tackling leap I made into my husband’s arms afterward. Or, that before I even took those 6 tests, I had an instinct that told me I was pregnant and saved me from taking a medication an ER doctor prescribed because he said I “likely lost the baby and probably have irritable bowel”.

She doesn’t know that when I heard his heartbeat for the very first time, it was the most beautiful and breathtaking sound I would ever know. That it was strong and quick, and such a gift. And that 13 weeks later that same heartbeat, as strong as it was, would lead us to discovering he had a critical congenital heart defect.

She doesn’t know the shock I felt, and that in an instant, all my joy was replaced with stagnating fear.

She doesn’t know the journal I started for him that Mother’s Day, telling him how much he was wanted and already loved. Or the letters I would write to him from my heart, sharing happenings of our day, and then telling him of his diagnosis, and how much it hurt.

She doesn’t know that I ceased all planning on his nursery. That I closed the door to the room where he would one day sleep, and for a little while, closed the door to my heart. That I didn’t want a baby shower, clothing, toys or empty albums, because it hurt too much – the thought he might never use them and I might never get to fill them.

She doesn’t know the sadness that overcame me or how hard I fought to push it out – and won.

She doesn’t know that on the day I pulled out all the stops and made a decision to love in spite of all the “what-ifs”, the door to his room reopened and with it, a tide of love so strong, it would wipe out anything and anyone in its path. That that very room would become the only place I would find solace and safety, and feel close to him when I came home, and he didn’t.

She doesn’t know how weeks of ultrasounds and tests leading up to his birth brought me closer to him. How seeing his magnificent and delicate body flicker across a screen, learning every facet of his heart, would further solidify my commitment to him.

She doesn’t know how with every passing day, carrying his beautiful body in my womb, knowing full well challenges would lie ahead, that I vowed to love him through it all. For hours I would sit, talking to just him, loving him. I would lie awake in the night – his most active time – just to feel him move because I feared I might never have the chance once he was born.

She doesn’t know how hard and often I prayed, begging God to just let me keep him. And that no matter what, I would love him in life and I would love him in death, if God called him home.

She doesn’t know how I labored with him – becoming so ill, both our lives in jeopardy. The moments when his heart rate began to plummet and my body was giving out. Facing a heart-wrenching reality and making it known that at all costs, Luke must be saved.

She doesn’t know once he was born, I never heard his first cry or that I don’t fully remember him being laid beside me an hour later, his precious face I would not see through all the tape and tubing. Three days I would wait to see him again and the reunion, so much like coming home. The other half of my heart lying in a NICU, so frail, so tiny – so mine.

She doesn’t know the hours upon hours I spent at his bedside. So many sleepless nights of worry and because I just wouldn’t leave him. Setting alarms reminding me to pump because it was the only thing I could do for my baby, and all the while, machine suctioning, I would sob. I sobbed because this wasn’t how it was supposed to be. I sobbed because I wanted my baby to my breast, not a sterile, cold machine. I sobbed because I had seen another mother lose her precious boy just moments before, and I too, now understood the delicate balance of life. And I sobbed.

She doesn’t know the fears and tears I have shed – joy and sadness. Handing my baby to a surgeon, not knowing if he would ever come back to me and when he did, the rejoicing in my heart at his new life.

She doesn’t know how my heart was being prepared for a baby I thought I might lose – a baby that I needed more than he ever needed, or will need me.

If she knew these things…how I still rock him before bed every night, sometimes to his dismay. Or that I check on him before I drift to sleep and then again like clockwork, awake in the middle of the night, to watch him breathe. That I see him – really see him – play and interact, and I admire him, adore him, for all he has achieved.

If she knew we still have a pebbly and uncertain road ahead, or all the many ways he’s making strides. That a milestone is so much more than that – it is extraordinary – and how my heart swells and leaps when he learns something new and is so proud of himself.

And when he’s racing around all full of boy – screaming and yelling and dirty, causing fantastic destruction in his path, and so trustingly throws himself into my arms, I feel his heart thumping and pumping, red cheeks and sweaty brow — I know. I know full well, these are the moments. Such precious moments. If she knew all my heart holds – life-altering experience that cannot be unseen or unfelt – she would know, it is in these moments that I fully live every minute of every day.

Life lived isn’t always to be measured in years. It is in the depth. Live fully. Love deeply. No regrets. Mind the moments.

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.

Mother’s Day – Part 1

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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, mother of Luke

Friday, May 8, 2015 – Part 1: Mother’s Day

I was never really any good with kids. Growing up, I rarely babysat and the times I did, I really didn’t care for it much. Once I actually figured out how to hold the baby, it was guaranteed he or she would cry. If anyone had told me when I was younger that they thought I would be a great mother, I could be certain that they were lying. As a child, I didn’t have the best role model for motherly love – frankly, my experience taught me what a mother is not. My inept maternal instinct led me to believe it was best I did not venture in to the realm of children. That was all up until the last couple of years, when everything changed.

When Scott and I married 10 years ago, our life was perfect – just the two of us. We enjoyed our carefree lives –worked hard, played hard. We did what we wanted, when we wanted. Life was good and life was simple. And then it came calling…that still, small voice, deep from within – we wanted more. It doesn’t happen for everyone, but for us it did – that parental calling – the desire to be someone more and give to someone “more.”

This Mother’s Day marks three years since I knew I was pregnant. I say “knew” because it’s true – I knew long before a test could tell me. In that instant, that sweet moment in time, I was changed – at a cellular level, I was altered. I now had a fire in my soul and an instinct to go with it.

Just as the tiny baby in my belly was growing, so too, was the love and joy quickly building in ways I had never before imagined. The moment it all became very real, that defining life moment, as I lay on an exam table at St. Christopher’s Hospital for Children and first heard the words “life-threatening,” “critical” and “heart defect.” My breath caught in a place somewhere between Heaven and Earth and I could hear my own heart beating out of my chest. Time stopped. All of it. Within mere hours every dream, every plan I had made was replaced with fear.  How could I love a baby I might lose? How could I open myself to the possibility of that devastating pain? But I didhow could I NOT?

I vowed to love and protect my son – every ounce of him. In the weeks leading up to his diagnosis in utero, something within me already knew. I have no way to describe it, only that my heart was being prepared for Luke. I would love him if he were born with a syndrome, if he were born with a deformity, if he were born in any way other than what this world deems “perfect” because for me, through the eyes of his mother, he was already perfect in every way just as he was. My commitment to love him was pure and honest, and I knew it might even hurt. It has hurt. A lot.