For our first edition here, let’s just get acquainted. In whatever format you choose, write a post sharing who you are, the basics of your child’s story and one thing that really stood out to you from your child’s first major hospital or medical experience and why. (For carnival rules and information click here.)

Jacqui’s Story

So much was riding on that one day — all of our dreams, years of heartbroken prayers, hopes still fragile from years of infertility and repetitive miscarriage. It was all coming down to this one sunny day in September, and we wondered as we drove to the hospital that morning how it would end. We cried through the entire thirty minute drive to the hospital, not knowing if we were going to be saying hello or goodbye. Would we hear her cry? Would she need to have a trach? Would she breathe at all? Would we get to hold her? What if…? But I couldn’t bear to finish the thought of my worst fear.

Months earlier we had learned the devastating news on an early ultrasound. Our baby had a large mass on the right side of her face and neck. Opinions were mixed on the actual diagnosis. Originally we were told that we would likely miscarry, that she probably had Turner’s Syndrome. That she might have Down’s Syndrome, Trisomy 18, or a host of other complications that we lost much sleep over. Later we were told that the mass was a teratoma and that she would likely die at birth or during a surgery to attempt to secure an airway. We were pressed to consider ‘termination’ or at the very least, an amnio. We adamantly refused both. We began fighting to find a perinatologist who cared whether she survived and found one a three hour drive away. A complex birth plan and monitoring system was put into place to give her the best odds possible for her survival. A modified EXIT procedure would be performed in an attempt to make sure she had a secure airway throughout the birth.

In the OR suite, I lost count of the number of medical personnel in the room at somewhere over twenty. There was the perinatologist’s team, a surgical team, an ENT surgeon and his team, a respiratory therapy team, a NICU team… and probably others. I felt conflicting emotions of resentment over the number of people in the room (mostly because this birth was so different than we had hoped) and overwhelming gratitude that so many people were there to help try and keep our baby safe. And I started to quietly cry when they told me they were starting the delivery, wishing I could keep her safe just a little longer, hoping — praying that she wasn’t about to die.

I remember hearing a funny little squeak, and wondering what it was. I looked up from my white knuckles to Ken’s awestruck face that suddenly burst into a mile-wide grin. That sound had been our baby’s first beautiful cry. Her second attempt was loud and long. They held her up for a moment for me to get my first glimpse of her. I laughed as tears rained down my cheeks and Ken joyously whooped, “Do you hear her, honey? She made it! She’s OK!”

Then the room was a bustle of serious, purposeful activity. I watched from an aching distance while they intubated her as a precaution, and started an IV. Ken whispered reassuringly in her newborn ears as she tightly gripped his finger. They wheeled her over for a moment and I got to stare into her bottomless ocean-blue eyes and whisper, “I love you, Jacqui…” before they whisked her off to the NICU.

Much of the rest of our hospital stay was a blur. Back and forth trips to the NICU, several floors away from my room. Waiting for what seemed like forever as she endured a CT scan and an MRI before we learned that her mass was a lymphatic malformation, and something that we would not be able to medically address until she was at least six months old. The moment of elation when they took her off of the ventilator and she breathed on her own. Struggling through the paradox of being told we couldn’t remove her from the NICU until she could eat on her own while the nurses stuffed her with tube feedings under medical orders. Worrying over her very scary breathing pattern.

Her breathing. That is the one thing that stood out to me more than anything during that first hospital experience. It was so labored sounding. She snored and often stopped breathing all together, resuming only after she was jostled. I was afraid to leave her in the NICU, but they did have her hooked up to a cardiac monitor. I asked the attending physician about it and he told me there was no cause for worry. That newborns often sounded like that. She was just “junky” from the birth and it would clear up in a few days. A dark cloud of doubt gathered in my heart as I cautiously sat back to watch and wait.

When it was time to go home, her breathing hadn’t improved. She scared me. I was afraid I would fall asleep and she would stop breathing and never wake up. I asked the attending to send her home with an apnea monitor. He refused. Flat out emphatically refused. Even when I tried to press the matter. Said she was fine and that she didn’t need one. I asked if the lymphatic malformation could swell up like lymph nodes do if she caught a cold. He shook his head no. Told me I was worrying too much, but something in his eyes as he said it unsettled me. He left and I tried to pinpoint what it was about the conversation that bothered me. The substance of it flitted just out of reach from my sleep-deprived brain. In my arms, Jacqui sputtered and stopped breathing for the hundredth time. I jostled her and she inhaled raggedly. “What if…,” my heart whispered, “What if he’s sending her home with you to die?” I went cold. Numb with fear. Then I flashed white hot with determination. Not if I could help it.

After we got home, we took shifts sitting up with Jacqui keeping her breathing until our appointment with her pediatrician the next day. As we walked into the office the next morning I whispered to Ken, “We come home with an apnea monitor, or not at all.” We got our apnea monitor.

One week later, that apnea monitor saved her life. Jacqui caught her first cold virus. In the middle of the night, her lymphatic malformation began rapidly swelling and shutting off her airway, just as I had feared it might. Her heart rate monitor alerted us and we got her to the local ER just in time to intubate her before her airway was completely shut off by the swelling.

Jacqui spent the next nine weeks in the NICU. Six weeks on a ventilator. She had a tracheostomy. A G-tube placement. MRI’s, CT scans, IV and PICC line placements, CT guided injection therapy of her lymphatic malformation. A host of heroic and horrific experiences that no newborn should ever have to endure. That no parent should ever have to watch.

And it was just beginning.

Jacqui is five now. She’s been under anesthesia for various surgeries and procedures twenty-five times now. Twenty-five, and I know in my heart there will be more. And it never gets easier. And I worry. I worry whether we have made the right choices for her, whether tomorrow will bring some new hardship for her to endure.

But mostly I’m grateful. Grateful that for some reason that I still fail to comprehend, God chose us. For some reason, He believed we were the right parents for this amazing little girl. It humbles me. Inspires me to live up to that sacred trust we have been given. Because of her, our life is filled with a joy all the more precious for the sorrow we have known through her. And in those moments where I long to completely give up, I remember that she was a gift. A gift that I was entrusted with. She is counting on me and I refuse to fail her.

What About You? Tell Me Your Child’s Story…

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Just a little reminder… It all starts next Thursday, so get those posts ready and see you here on the 24th!

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This year, our family has a lot to be thankful for. For the first time in three years, we were able to spend Thanksgiving at home with family - instead of in NYC for one of Jacqui’s surgeries. While we are extremely grateful for Jacqui’s amazing surgeon in New York, we are even more grateful to not be in the Big Apple this year. So… in remembrance of just how far we have come in three years…

Thanksgiving 2005

Roosevelt St. Luke’s Hospital in Manhattan, where Jacqui had surgery to remove her Lymphatic Malformation

Jacqui after her 8 hour surgery

Thanksgiving Day 2005 in the Hospital

Jacqui giving her buddy, Cosmo, a check-up

Thanksgiving 2006

Jacqui looking out our apartment window at the Manhattan skyline

All four of us ended up in Roosevelt St. Luke’s ER with a horrible stomach flu, and Jacqui’s surgery was postponed while we recovered.

It’s no fun to be this sick in an apartment far away from home with two small children and a husband just as sick as you are.

Jacqui talking with her surgeon, Dr. Milton Waner, on the morning of her surgery.

A heart full of worries as we wait to take Jacqui back to the OR suite.

Jacqui in the recovery room after her surgery

Thanksgiving dinner in the diner below our apartment… while Kyle threw everything he could reach onto the floor. Fun times.

Watching the Macy’s Thanksgiving Day Parade in the Rain

It’s much more fun to watch it on TV from the comfort of your living room.

We went to FAO Schwartz to play on the giant piano and try to forget that we were missing our family’s Thanksgiving back home.

Thanksgiving 2007

We were with Ken’s family for Thanksgiving this year… Jacqui was so excited to see Grandma and Grandpa!

Coloring before Dinner

Ken enjoying a pre-dinner chat with his Dad

Family visiting around the table long after dinner is finished.

Kyle getting some last minutes of fun crammed in
before bedtime… playing with toys that Ken played with as a child.

Jacqui - Laughing and just enjoying being a kid.

We’ve come a long way in three years and NYC cannot begin to compete with the joy of a Thanksgiving spent at home with our family. Thank you Dr. Waner ~ For a Thanksgiving that was so worth the wait!

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Photographer Unknown

Surrendering my fears. A task that has never come easy for me. That is what my friend, Melody, over at Wrapped Emotions asked of me this week:

“Take a pen… write your fears… be honest with yourself …make them into words… see your fears. …This week find your ritual [for letting go of fears]. Experience it. This is a personal journey. …What you create…be it a page of jumbled words, mingled colors, introspective images, should be intimately yours. …Write a blog post with what you are comfortable sharing.”

This is a hard post for me to share. I have been putting it off all week. As the parent of a child with special medical needs, I have become accustomed to hiding. Hiding my pain from staring eyes of strangers, my anger over thoughtless, tactless comments, my heart from posers of that casual question, “How are you doing?” I know that most really don’t want to know. I see it in eyes that glaze over, on rare occasions when I summon the courage to share. I put on a smile, hide behind a laugh and give the expected answer. “I’m fine,” I smile. “Just fine.”

So Melody has asked and I promised to answer. I warn you, this is a long post. She asked for “real” and I cannot be real in a paragraph. It’s just not within my power. So, if your eyes haven’t glazed over already, read on…

When I think back to seven years ago, I realize that I once lived a pretty care-free life. Sure, I had fears. But they were the run-of-the mill variety… passing exams, graduating from college, getting married… Nothing of the sort that would keep me up at night, on my knees, pleading with God for deliverance.

On June 13, 2000, all of that suddenly changed. After months of trying to start a family, my husband and I experienced our first miscarriage. It would be the first of many. I fell into a tailspin, spiraling into the deepest, darkest fear and depression I had ever known. I had no idea how to handle fears of this sort. My life had been skipping along a perfectly manicured path, lined with happy expectations of my own devising. And suddenly, I was drowning.

For a year, I drifted, becoming apathetic about my own life, often staying up all night, begging God to just let me die. On the anniversary of our first miscarriage, I was overwhelmed with grief, desperate, and heartsick. I remember waking up that morning and curling into a ball of convulsive sobs as I realized I had once again not been permitted to die in my sleep.

That morning, I prayed something different. For the first time when I prayed, I asked God to teach me how to live. To give me the grace to bear the heartache. And God was faithful. He threw me a lifeline.

I couldn’t understand why, but I found myself feeling compelled, called to a specific action. I knotted my hair into a disheveled ponytail and pulled on a sweatshirt. I grabbed my Bible, a notebook and my keys and headed out the door. Then I sat in my car, confused as to my intentions, wondering what to do next. Suddenly I knew. I pointed my car west. My ritual for facing my fears had begun.

Photographer Unknown

“Man cannot discover new oceans unless he has the courage to lose sight of the shore.” ~Andre Gide

I reached the rugged pacific coastline and began scanning the cliff-sides. They flicked by, black and glistening with sea mist, dotted with twisted and gnarled myrtle trees that silently pointed the direction of the wind’s favorite path.

Amongst the jagged, stygian rocks, I at last glimpsed what I sought. I pulled the car off the highway and out of sight and began picking my way through rocky outcroppings toward the sound of the pounding surf. Soon I was completely hidden from view. I spied an ancient stone seat, carved by a millenia of relentless tides.

It glistened with the damp of atomized surf and beckoned me to enjoy a front row view to the pyrotechnics display of the crashing waves. Muffled barking calls drifted upwards from the seal rookery below, luring me in for an extended stay.

Somehow, before the immenseness of the ocean, I found the courage to name my fears. Fears that I would never be able to have a child, that because of me, my husband would never know the joy of seeing his eyes or mine in the faces of his own children, fears that I was somehow being punished, or paying my dues for a near perfect life, fears that the miscarriages had somehow been my fault.

I wrote them out, page after page, on the dampened sheets of my journal, salt form my tears and salt from the sea blurring the ink into swirling pools of transcribed heartache. I wrote until I had emptied my soul and then one by one, surrendered my fears to God.

I closed my book and pressed my back into the cold, damp stone and stared out to sea. I watched as the clouds gathered at the horizon and the sun sunk low. Through my heart rang the promise I had discovered earlier while reading: Jeremiah 29:11 - the verse in the upper left corner of my blog.

I watched as the clouds opened up to receive the setting sun. It slipped through a slot in their sun-splashed billows like a coin in a bank, before spilling its brilliant reds and golds across the surface of the sea and sinking toward another watcher’s dawn.

The sky imperceptibly darkened and I felt the chill of the coastal evening advancing. I tore a corner from the first page of my journal entry and watched it flutter into the roiling foam below.

It was done. My fears were no longer mine to pour over in silent, bitter heartache. I had surrendered them to God, buried them in the depths of the sea. I stood, feeling a measure of peace, the lifting of a great burden, and began picking my way back through the rocks toward home.

Many pages and many journals have been filled since that day. Many corners have been torn from many entries and allowed to flutter downward into the depths of the sea, each torn corner serving as a sentinel, a reminder that the fears listed there are no longer mine alone.

When I look back through the pages, I see that my fears have changed with time. Something I see as progress in my life. I am no longer dwelling on my fears, allowing them to paralyze my soul. I name them, surrender them, and keep walking.

In May of 2002, we feared for yet another unborn child. On a 20 week ultrasound, we learned we were expecting a baby girl. Our joy was mingled with new fears as we heard words like: Cystic hygroma, teratoma, lymphatic malformation, Down’s syndrome, trisomy 18, Turner’s syndrome, miscarriage and stillbirth. Together, my husband and I surrendered these fears to God on the face of that same black cliff, pledging to draw closer to God and to each other no matter what lay ahead.

In September of 2002, when she was just two weeks old, I stood in a NICU unit watching nurses and doctors scramble around the lifeless, mottled gray body of our only child. Monitors beeped, frantically calling out their alarms of zeroed readings and flattened lines. I longed to scream along with them in an agony I still cannot name.

In my mind, I went to my rocky seaside cliff and begged God to save our little girl while surrendering to him my fears: My fear that I was losing her due to some personal failure of mine, my fear of facing life without her, my fear that I would never be free of the image of my gray, lifeless child. God answered my prayer and I watched her flush a violent shade of pink as she took a ragged shuddering breath.

There have been many more fears since then: Fears that we would make the wrong decisions for her as we navigated an unending maze of complex medical decisions, that treatments would fail, that surgeries would lead to complications or that we might lose her altogether. Fears that one day she will not understand the decisions we have made for her, that she will look on our choices as failures to serve as guardian over her best interests, that I won’t have an answer for her on the day she asks me why her life is different. Fears that we might never be able to have another child, fears that I am insufficient as a parent for the wonderful daughter and son I have been blessed with. One by one, I write them down and give them away to one stronger than myself, in a place that speaks to my soul.

I cannot always flee to the ocean with two children in my care, but I draw strength from the knowledge that my husband and I will both give selflessly for the other. That if I need solitude, it is mine for the asking.

Sometimes I seek refuge in an old rare bookstore, where a worn leather chair waits for me like an old friend amongst mouldering volumes, cradling ancient phrases of wisdom within their fragile gilded bindings…

Sometimes it is in the dark dampness of our backyard, among the towering pines where I first dreamed of motherhood…

… And sometimes it is just a niche I have carved out within the walls of my memory. A memory of that special place at the edge of the sea. There is solace for my fears in knowing that my cliff-side perch is always there, waiting for me to come and whisper my secrets and surrender them to the author of life.

Want to see how other writers took on this topic? Click the icon above and visit Wrapped Emotions today!

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Photographer Unknown

It happened today. The day I have been dreading with every ounce of my soul. I have lost sleep over it, cried over it, prayed over it, and longed with all my heart that the day would never come. But come it did. This morning, I picked up my four-year-old little girl from her play group and I was startled by her silence. Startled because this particular little girl is usually an effervescent bundle of kinetic energy. An unsinkable soul who tackles life head-on with a bounce and a giggle. Her silence today was unprecedented and it persisted after buckling her into her car-seat. She was so quiet, that as we drove home, I adjusted the rear-view mirror to catch a glimpse of her face in the back seat. There were tears on her cheeks and her head had drooped to her chest.

I found tears springing into my own eyes as I asked, “Oh sweetie! What’s the matter?”

She looked up with a fresh tear jagging a path towards a quivering little chin, “Why is my smile differn’t from all ‘da nov-ver kids, Mommy?”

I suddenly couldn’t see where I was going. My eyelids pooled with hot, stinging tears and my heart felt as though it would burst with the sudden crushing pain that came crashing down. I pulled the car into a grocery store parking lot and turned around to look at her. My beautiful little girl. And I wondered, how in the world was I going to answer her?

You see, my little girl is quite special. A miracle many times over. She was born with a rare birth defect called a lymphatic malformation (LM). A large mass on the right side of her face and neck that collapsed her windpipe when she was just two weeks old. Together she and I have held each other’s hands through it all. Weeks on a ventilator, a tracheostomy, a feeding tube. Surgery after surgery after surgery. Twenty three so far, and she’s only four. Four years old and the most courageous little soul I have ever known.

When she turned three, we traveled across the country to New York together for a highly specialized surgery to remove her LM. The LM was successfully removed but one of her facial nerves had to be grafted in the process, causing one side of her smile to be a little weaker than the other. Her angelic little face is fairly symmetrical now, but her smile is not, and probably never will be. I knew the day would come when she would ask me about it. I just hadn’t expected that it would be today.

She sat there watching me, absorbing the emotions that played across my face despite my best efforts to hide them. I struggled to form an answer and lost myself somewhere within her great, pleading brown eyes. Eyes that locked with mine as she asked me once more, “Mommy, what’s ‘da matter wif my smile? Why is it different from all ‘da nov-ver kids’ smiles, Mommy?

I panicked and stared at the floor. In the complete absence of any words and I prayed. I begged God to give me something to say and wondered for the millionth time why it was that out of all the people in the world, that God had thought I was the right person for this amazing little girl to call “Mommy”. I looked up again at her tear-stained cheeks and suddenly, the words came:

“Your smile is different, Sweetie, because you are an extra special little girl who needed an extra special smile.”

Her bottom lip quivered. “My smile’s not special. It’s jes’ differn’t. Why Mommy?”

I got out of the car and unbuckled her from her car seat. I hugged her close as we sat down on the running-board and said, “Oh, but it is special! When you were a baby, your smile was so very, very bright and so very, very sunny, and so very, very special, that God decided that he wanted to keep some of your smile with him always - to light up heaven.”

She looked up in awe. “God wanted ta keep some of my smile wif him in hebben?”

“Yes, He did! Right now that little piece of your smile is lighting up heaven. God is holding it in his hands and your beautiful little smile makes God and all the angels so happy! He knows what a kind and wonderful little girl you are, so He knew that you would share your smile with Him.”

Her beautiful, crooked little smile spread across her face and lit up her eyes. “My smile is making God and all da angels happy right now?”

I turned my face and brushed away tears as I said, “Oh, I’m sure of it! God is so happy and so proud of you for being willing and brave enough to share your smile with him!

“Oh Mommy! Dat makes me sooooo happy! I will share my smile wif God ’cause he is sharin’ ‘da whole wide wurld wif me! Do you like my smile Mommy? Even though some of it is missin’?”

I hugged her close and tried not to cry. “Yes, Sweetheart. I love your smile and think it is the most beautiful smile in the whole world!”

She leaned her head back, broadening her grin. “Den I must always smile wif ‘da rest of my smile I have left - to light up ‘da wurld dat God made for me!”

I held her tight as my heart ached with the beauty of her priceless thoughts. I blinked back tears as I wrestled with the longing to remove every heartache from her precious little life and the knowledge that those very heartaches were key elements in God’s blueprints for crafting an extraordinary soul of rare worth. In that moment, I would have sacrificed any and all of myself or my possessions to spare her even an ounce of heartache, while at the same time, I wouldn’t have stood in the way of God’s will for her life for anything. This, I thought to myself, is the essence of motherhood. It is that moment of looking into the eyes of your child and knowing that there is nothing you would not give, so that they might have. A lifetime of hopes and dreams for the life of a treasured child laid at God’s feet.

This child of mine has taught me so very many things. Through her, I have learned the value of living in the moment, to never take a single heartbeat for granted, to look for the beauty in the world instead of focusing on the moments of heartache. Every day that I know her, brings with it a new lesson of courage - a new discovery of what it truly means to be a mother. And I am still learning.

I kissed her rosy cheeks, brushing away the last tiny tear as she lit up my soul with the sunshine of her miracle smile. Once again today, I placed my precious little girl and all my priceless hopes and dreams for her life in God’s capable hands. Once again I pledged to do all in my power to help her fulfill God’s will for her life and pleaded for the wisdom to be the kind of parent that I ought to be. And I know it won’t be the last. After all, motherhood, like childhood, is a journey.

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