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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Collision

“We were all heading for each other on a collision course, no matter what. Maybe some people are just meant to be in the same story.” -Jandy Nelson, I’ll Give You The Sun

I read an article a few months ago about a group of scientists who believe there are people in this world that each of us is drawn to on a cellular level. It’s different than attraction, different than friendship, different than love.

They say it’s often something we don’t understand – something that we can’t explain – something over which we have no control. They believe that when these people are apart, life tends to go on seemingly unaffected.

However, if they suddenly find themselves in each other’s lives, a tension arises…a great force that leaves both people feeling a sense of restlessness and dis-ease. The closer those cells come to each other, the closer they need to be. And so they pull.

It’s both a strange and beautiful thought that leaves me curious about some of the people in my life…

It’s that person you think of and suddenly receive a phone call from…that person you had a dream about and unexpectedly run into them while going about your day…that person that doesn’t utter a word and yet, you know that something is wrong.

And although there is this draw to each other, it’s also believed that these people can experience great unexplainable conflict between each other. Mostly because on some level, they make us feel afraid – we become afraid of what we can’t control. We become afraid of what they see…and we also become afraid of not having them in our lives. We seldom understand it, but we almost always, without fail, ‘feel’ it. And so we push…

Therein lies the collision…the desire to move towards something and destroy it all at the same time. The need to push…and the need to pull.

I used to believe it was my job to avoid collisions…we are taught to stay out of harm’s way. But then I realized that meant I wouldn’t get to experience that Divine force that brings some of us together…whether I understood it or not.

Right now, I’m trying really hard to just drive…even though it scares me. Because I don’t believe all collisions happen just because we are bad drivers. Sometimes the weather is harsh, the road not visible. We chart our course on pavement, and somehow, we end up in a sea of uncertainty. The depth of ocean washing over us, that threatens to swallow our fears, our vulnerabilities, maybe even our joys.

So I’m trying hard to just ‘feel’ those people in my life right now…because feeling is who I am…

I am a person who feels life.

Though I also see it and hear it and think it and touch it, my dominant sense in this life is to feel…Truly. Madly. Deeply. This is both my greatest strength and my greatest weakness…my ultimate undoing.

Because your tears become my tears. Your pain becomes my pain. Your loss becomes my loss. And depending on the person, this can be a problem. Because, if I love you…I will drown with you. I will throw myself overboard into the depths and darkness of salty sea…I will hold your hand…I will let my lungs fill up right alongside you…and I will drown in an ocean of our collective tears just so you don’t have to sink alone.

But I would really love to stop doing that.

Because ultimately, it doesn’t end up helping you…it just ends up hurting me. We both end up holding our breath while we wait for the glimmer of light to guide us ashore, or a search party to bring us back to life.

The truth is, being a human is scary sometimes. Loving people is scary sometimes. And knowing how much of yourself to give…is REALLY scary sometimes.

But I’m learning that my love can do a lot of things…

My love can teach you to swim. My love can throw you a life raft. My love can even call the coast guard. My love will search through all hours of darkness for you. But my love can’t rescue someone who doesn’t want to be saved.

And sometimes, as hard as it is, people need to see how far they can sink before their lungs cave in. I know…I’ve been that person.

But I can’t go down with you anymore, because my love also wants to be there for you when you come up for air like I know you will. My love wants to meet you at the shore…bring you a soft blanket…a warm fire…and a safe place to land. My love wants to help you recover and find your strength again…the fire that burns inside you, never to be extinguished.

And my love can’t do any of that if it’s being pulled from the water alongside you.

And so…the push…the pull…the drawing force of cells…the uniting and untying of souls, it cannot all be lost to some wreckage in a sea of abyss. Because my love doesn’t want to lose you…because my love doesn’t want to lose me either.
When the tides roll in and the current runs deep, I want to be there FOR you, not just with you. And because…I’m not done believing that we are only just meant to be in the same story.

 

 

 

 

 

Why I Won’t Light It Up Blue

On this day when everyone lights it up blue and has autism on their mind, I would just like to say that as a parent of a child with autism, all I want in this world is to understand my son and for others to try to as well.

Only a few short weeks ago, I could not say the word autism without a lump growing in my throat and my eyes welling with tears. In the early days after diagnosis, I couldn’t even so much as utter “Hi, my name is Laurel and I am calling regarding services for my son who was diagnosed with autism,” without totally breaking down while calling providers. Sometimes I couldn’t even make it past my own name and at times, had to hang up and call back later, only to cry again.

While I already knew for many months with everything that was in me, there was nothing that could ever truly prepare me to hear the words falling from the doctor’s lips. And fall they did…those words hitting the walls of my heart like concrete blocks, leaving jagged chunks of what I thought would be, could be, scattered along a path I had laid for my family. For my son.

Since that day, I’ve cried just about every day. Sometimes from sadness, sometimes anger, a lot of frustration, and most often, because of love. You see, amidst the fallen pieces – big dreams, hopes, the vivid picture I could not only see, but feel, like the strokes left behind from the artist’s brush, the texture was smooth in some places and rougher in others. Like the tiny particles remaining from that concrete rock that collided with my version of reality, they were now imbedded in the colors of my painting. As I traced the dream with my fingers I could feel smooth, then bumpy, rough…and I knew this would be forever.

This authentic and lucid dream I had was once again, not mine. It had never been mine to paint – the canvas was surely mine, but the colors and texture were not up to me to choose. I couldn’t ever have imagined the kaleidoscope that would follow…

I’d hoped for once, my maternal instinct had failed me. That the doctor would tell me I was over reacting, that every 3 year old spends incessant amounts of time organizing and perfecting, lining up trains, cars, magnets on a refrigerator. That leaving the house or transitioning activities is a challenge for any toddler. But she didn’t…

After a 3 hour observation and evaluation and an encyclopedias worth of paperwork, our entire lives, our complete history on display, I saw it in her eyes. I knew what she was about to deliver. She did it in the kindest and gentlest way, and I will forever be grateful for her compassion and empathy.

She provided us with some papers, said we were doing all the right things already, told us we could contact her at any time for any thing, gave me the warmest hug, and sent us on our way. We decided to keep it to ourselves for a while longer; we just weren’t ready to tell others.

I think some of that was fear talking. He is still little and maybe with enough therapy we could help him be as neurotypical as possible. “Neurotypical” is the politically correct word for “normal.” I just could not get past the “autism” word. I was stuck and scared.

My brain understood, but my heart hadn’t yet caught up. Even over a years worth of mother’s intuition did not prepare me. Why was this at once, so hard and yet so easy. There was overwhelming relief because – finally! Finally, we were not living this alone; it wasn’t manifested in some version of our own reality. It was real.

It’s been very real.

I’ve gotten him all the help I can find. Speech therapy, more occupational therapy, ABA therapy. I read and read and read, learning everything I possibly can about autism and sensory processing disorder. I joined online support groups where I’ve met some amazing mothers and no longer feel so alone and lost. There are friends old and new who became my angels, and they know who they are – without them, I would have crumbled. I don’t believe most people have even the slightest inkling what autism families go through – I didn’t. Add in additional diagnoses and medical challenges, and it is literally all-consuming in every sense. All day. Every day.

Initially, we were afraid to tell family and friends because we just didn’t want our little boy treated differently or analyzed. This was fear talking and I know now that those fears would have never happened. So we relied on each other for support, but as a scared mom I needed so much more, and found it in my online autism community and among amazing medical professionals I now so thankfully and lovingly call, friends.

You see, when you have a child with autism your biggest fear is the future. Not so much the near future but the distant future. Will he go to college or will he need to be cared for at home. Will he speak or will he be nonverbal forever. Will he ever have a real friend. Please Lord, will he ever call me “mom” or say “I love you” and on his own. Will he learn to point. Will he be potty trained. There’s so much more…

Just because a child does not speak, doesn’t mean they can’t communicate. Just because they don’t make eye contact, doesn’t mean they aren’t listening. If they don’t want to be touched, it doesn’t mean they are incapable of love. If they need to spin, yell, hum – it’s because it feels good, it serves a need – and it’s okay.

Autism is a spectrum disorder. A person with autism can be low on the spectrum (high functioning) meaning they can communicate and have some challenges but with time can usually manage them and live a normal life. Being high on the spectrum (low functioning) is well, the opposite usually. They are usually nonverbal individuals who could possibly need care for the rest of their lives.

It’s hard to define the autism spectrum. As the saying goes, when you meet one person with autism you meet ONE person with autism. They are all different and all extraordinary – ALL of them. They all have different challenges and strengths. Not one person with autism is the same. Please remember that. Everyone – typical or not – is their own unique masterpiece, crafted by His hand.

If I could put Luke on a pedestal, I would. He brings joy to every person he touches. He is just the most beautiful gift God has ever given me and I am so proud to be his mother. I shed many, many tears of joy because of him. My life is richer, relationships more transparent. As if all we had already been through didn’t cause me to recognize life’s value, any remaining scales have fallen from my eyes.

My canvas I thought, was already perfect. What I didn’t see was the full spectrum of colors and how the mixing, the texture, the unevenness, would be the very beauty defining our lives together. Paint poured out like tears flowing, the canvas takes new life.

The white light of soul, prism refracts. A spectrum – a beautiful kaleidoscope of vibrant color – is born. To me, Luke, and every person with autism or a “disability”, is the essence of purest white light refracted. Where life is not distorted, but clarified and transformed. It is innocence and purity, intrinsic honesty and beauty. But to see it, you must surrender your canvas to the Artist’s brush. You must trust. You must have faith.

April is Autism awareness month but for our family, it’s every day. Every day is a chance to educate others because we live in a time where it is estimated that 1 out of 68 children in this country are diagnosed with Autism and the numbers are as high as 1 in 34 in some parts of the country. I think most people know a child or person with autism. If you don’t, the day you do, smile and feel blessed, because you have met the very essence of spirit walking this earth.

I will not light it up blue because to me, autism is a beautiful kaleidoscope of constantly changing and overlapping colors.

Learn what autism really is and how you can involve children and adults with autism in your every day lives. Teach your children about autism. They will be encountering many peers on the spectrum, all different, but all extraordinary. Teach them all this, so they can become adults that will be tolerant of the changing world around them.

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 ❤️

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.

Yet.

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Seeing the glass half full has not always been intrinsic to my nature. Positivity is a trait I had to earn through years of dark struggle, therapy and self-reflection, combating demons – past and present. Until I saw absolutely no other way to be, it was as if a light was turned on…what was once a flicker, a glimmer in black night, turned golden, fiery, and burning bright.

We all have struggles. Life is rough. We learn what we are made of in times of uncertainty, discomfort and doubt. When all the odds are (seemingly) stacked against us, we have a choice. We. Have. A. Choice. Always. How many times have you taken the path of negativity? It’s so EASY, isn’t it? We wallow in self-pity, thinking of all the wrong and mess in our lives, we spiral down like a roller coaster, our stomach in our throat, knots of anger and perhaps even loathing and envy for what someone else’s life may seem to afford. It’s nasty – negativity. It breeds like a brown planthopper insect, carrying with it a virus and the ability to infect and devastate its host and the crops surrounding it. It can take out the best and strongest of us even in our finest season.

But…we can rise above it. We can find that flicker of light, however bright, and we can cultivate it. We can nurture positivity, we feed it into our lives by the thoughts we keep. The deep thoughts, the ones at the core of who we are, in our soul.

Here is my example.

Luke has been struggling with the use of his left hand, something I didn’t want to fully admit to, because of all the other medical and therapeutic appointments we keep on a weekly basis. Privately, I would work with him, always researching methods and creating games and activities to facilitate use of the hand he guards and keeps so tightly fisted. It has bothered me greatly, this lack of use, but not for the reasons you might think. Certainly I want him to have full function. I want him to be able to hold a cup, feed himself, pick up and throw a ball, pet his dogs with an open palm. To not be seen as different or weird or incapable. But he has been seen this way. A stranger felt the need to point out that he could not grasp the Cheerio he was trying so deliberately to pick up and “shouldn’t he be better at this at his age? What is wrong with him?” (I won’t delve into ignorance – that’s for another time.) His determination would not let him quit. He struggled and tried again, concentrating, fixating all his energy on that tiny “O”. It’s heartbreaking at times, to watch as he struggles, but I know one thing. One very important word – YET. Luke doesn’t have full use of his left hand – YET. That one little word changes everything. It changes the tone, the meaning, the attitude, the perception of ability. Before you could ride a bike, could you ride a bike? Of course not! You didn’t have the balance, the coordination – the confidence! Our thoughts become beliefs and our beliefs become words and those words we either whisper or scream profoundly, become actions and actions become the path we walk. We can choose what we tell ourselves, what we tell others. I know what I tell Luke, and what I will always tell my son who for now, never gives up. If ever the day arrives (I’m sure it will) when he is made to feel inadequate or cannot do “that thing” my response will be, “yet” – “You can’t do it, yet.”

We need to repeat positivity until it bleeds the blackness from our thoughts, from our words. Until it becomes the only way we know how to be. It’s hard, I will not lie. Some days are a real struggle. Recognize the struggle. Own it, replace it with full, shining, bright and pure light and move on. Move past the doubt you have in your heart. If you can’t do it today, in this very moment, let tomorrow be your chance at “yet”. I know you can do it.