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.

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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.