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.

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.

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.