Reach for the light

Community.

This thing we build on love, on mutual understanding, on acceptance, on camaraderie, and on empathy birthed from hardships.

Life is so breathtakingly beautiful. And in its beauty, it can also be very hard at times.

Life’s about holding the light for one another.

It’s about clinging to hope and faith.

It’s about clinging to love.

And it’s about reaching out our hands and uniting.

This is how strangers become friends, and this is how we remember we are never, ever alone.

Reach for the light.

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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.

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.