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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The Truth Of How To Be Strong

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


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

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

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

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

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

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

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

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

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

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

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

When I Called

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

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

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

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

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

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

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

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

When I think of all this…all that has transpired on a journey I never wanted to take, I am reminded of a fundamental truth…a truth that I nearly let pass me by in my river of sadness. I am reminded that while our own walk with God is just that…our own…our walk through this life was never meant to be taken alone. I am reminded that when Samina embraced the floodgates of my agony…it wasn’t just Samina. It was God radiating through Samina. It was our God whispering, “See…I’m here. I hear you. I ache for you. And you’re never alone.”

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

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

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.

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.