Faith Renewed 

It’s Spring. And I’ve been caught in my own deep winter for far too long.

The leaves have long since fallen, nature unclenching her fist. And I am brought back to the resounding discomfort that often comes with letting go. The pain of watching something fall from a tightened grasp.

Winter came.

And for me, Winter stayed.

I knelt on the ground, picking up the crumbled and crisped leaf, its vibrant beauty lost from months of cold and snow and rain. And that’s when I realized it – I have been caught up in my own cold winter. Clenched fists, fighting, struggling to stay on that limb and not fall to the cold, barren ground beneath. Hanging on to the bud so tightly, I lost sight of what comes next…

Spring.

An incredible time of growth and renewal. A time when all that once was, turns into everything it can be. A time that could never exist if the trees were not willing to release everything in their due time.

Nature does not resist letting go because it’s afraid of the loss. Nature embraces letting go because it creates space for something new. Something beautiful. Nature does not endure in the name of grief – it endures in the name of possibility.

Sometimes we have to let go of the beauty we once created – a person, a place, a deeply rooted dream. We have to breathe like blowing wind, carrying remnants of seasons past, leaving the ache of absence behind.

We must believe in nature’s greatest act of surrender – trusting that after every cold winter, Spring always comes.

…And I haven’t done a great job of believing.

Trust me when I say, you don’t want to see me right now.

My eyes are tired and swollen from crying. My hair is an unruly mess. My skin is dry and cracked. I’m dehydrated and depleted from surviving on caffeine. My barista has seen more of me than my friends and my at-home coffee Ninja has been on overdrive.

Lately, I don’t even recognize myself.

All I can ever think of is my bed. Sleep. And yet it never comes. My mind racing – it’s like a penned horse, bucking and jerking for the longing of unbridled freedom and the serenity it brings. I’m stuck in the confining corral of my own mind.

I think of all I need to be, want to be, to everyone and for everyone. For myself…whoever that is these days.

I’ve spent months walking through my own personal desert as crisp and cracked as that fallen leaf, and feeling as though at any moment, I would crumble to dust, pieces of me scattered and lost forever. I’d never be whole again.

I never expected to find myself here and I’ve had a hard time finding my way out. I’m still not sure I have the right map…

The landscape was treacherous and the elements fierce. Sleepless nights, discouraging days. I was afraid, isolated, lost. I was angry. I was hurt. I’ve tripped and fallen so many times, the bruises evident for months. I’ve even broken pieces of myself along the way.

But I have not given up. Or rather, He didn’t give up…and I merely pressed forth with His strength.

Sometimes it’s hard to know who you are in the midst of what everyone else believes you to be, or NEEDS you to be.

But that’s one thing the desert is really good at – it lets the sand blow against your rough exterior until finally, you uncover what lies beneath. It forces you to sit with the really hard questions so that you can sit with the really honest answers.

Answers and honesty your heart has known and tried to bury beneath the facades of “I’m okay” “I can handle this”…I’m handling this…right…?

Because sometimes – we can’t. Sometimes our handle on life and what it’s dealt us is the very thing that breaks us…we can break by our own hands. We resist the help we desperately need. We spread ourselves too thin, too often.

We want to do it all and be it all. Not for martyrdom or accolades, but because it’s who we are – we are conquerors, we are survivors, we are lovers and healers and we want it all to be okay. And sometimes, if we are honest with ourselves, it’s not that we no longer want the dream we’d once envisioned, it’s that we don’t know how to let it go and accept the new one.

We cling to the beauty of that leaf, and when it withers away, we are so consumed by the Winter – the loss – that we fail to see the transformation taking place before us. We want to get to the other side without feeling the harshness of Winter or the hot desert as it burns and wears us away.

We push it aside. We cover our ears. We hum a tune so loud we hope it drowns all the noise; sometimes, it drowns us before we can drown it. We punish ourselves repeatedly for what we cannot control.

And then, God reminds us of his faithfulness. He restores us.

We seldom become the people that we are all on our own. We become those people through love and encouragement along the way. We become those people because of those that open their arms and hearts to us when we are finding our way in the darkness. They may not have the map, but they have the compass. They don’t let us forget that Spring will come and with it, the promise – the gift – of renewed hope and faith.

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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.

Now Autism 

I need your help in changing the way the world sees anyone who is different. The words that are to follow are important, and stringing together the appropriate letters to convey what is in my soul right now, feels just about impossible. Writing from my heart can be painful, but it’s 100% real, and real is what I always strive to be.
A few days before Christmas 2016, we went for a second opinion and more information regarding Luke’s cortical dysplasia/cerebral palsy. Our previous neurologist transferred out of state and we had made this new appointment with a very reputable doctor last Winter, waiting a year to see her. Going into the appointment I wasn’t worried. I already knew Luke’s diagnoses and challenges but I wanted a clearer picture, a better understanding, and to discuss some concerns.

So tonight, I want to share with you, and the world, that I have a son, his name is Luke. He just turned 3 and he is so perfect and so beautiful that even now, I still can’t believe he really belongs to me. He makes me believe in God and in miracles. He lights up my entire world…and he has autism.
And although this isn’t shocking to me – I have known in my heart for quite some time – I still have moments of shock. I know in a few days the sting will wear off more fully but what won’t wear off, is the overwhelming sadness and fear for those in this world that are tormented because of their differences. This is where my heart has been sitting since last week. I can’t talk about it without tears. Even as I type this, I can barely see through them all.

I’m not sad for Luke, I’m not sad for me, for our family – Luke is amazing just the way he is. I’m sad for the people in this world who are so closed-minded that they will never see the beauty in someone with a disability. Until you spend some good quality time with Luke, you may think he is a typical toddler, and in many ways, he is. But he struggles – interacting with his peers is extremely upsetting to him – so he doesn’t do it. He has meltdowns. His left hand frustrates him, his left foot isn’t as stable and causes him to sometimes fall or appear very clumsy. Transitioning can be absolutely unnerving for him and he has difficulty expressing and communicating. He is impulsive and at any given time an object could be on a trajectory for your head (unintentionally). He sometimes needs to repeatedly spin in circles (I would barf) or throw himself into hard surfaces – maybe even you.

I could tell you more about Luke’s challenges and things he struggles with, more of his quirks, but instead, I want to tell you who he is.

Luke is capable of giving the best and most amazing hugs and kisses ever. He has a great sense of humor and can make a room full of people laugh. He absolutely loves adults and is extremely engaging and a total sweetheart; everyone who meets him, loves him. He sees beauty everywhere – and he makes sure you see it, too. He is polite, he is caring, and so very sensitive. He is the best and biggest helper. He ALWAYS knows where the sun and moon are at any given time. He has amazing hearing, and tells us when aircraft is approaching long before we can hear or see it. He loves music and has some pretty fancy footwork. He is very bright and super inquisitive to the point of driving me mad most days! He has an absolutely incredible memory. I could go on and on…These are Luke’s gifts. Nothing of which to be ashamed, or to hide, they are uniquely his.
Most simply put, Luke is love.

It’s not disability that robs us. What robs us, are our minds and the negative thoughts we house in them. Each of us is a vessel through which either love and positivity flow, or, negativity and sadness. We have the choice every day as to what type of conduit we will be to each other and to the world. And as long as I am on this earth, I will do my damdest to be sure Luke will only know love and acceptance.

As you’re reading this, you’re perhaps thinking that I have it all together – that I’m so positive – and you’d only be half right. I am positive. I worked for that and earned that many, many years ago in my childhood. It’s who I am, and I thank God, because I never would have made it through without that thought. But having it all together? No way.

This last year has been extremely stressful and challenging as I kept silent in my heart what I knew about Luke, until we received a diagnosis last week. We are challenged daily by his behaviors. I have searched and researched, for every possible activity and experience to give Luke, so as to help him – our nights and weekends have been consumed. I’ve spent so much time at his daycare to help him better interact, his classmates now call me “Mommy” and it’s totally possible that if you were to peek in the window, you’d see me holding someone else’s child, or wiping their nose, or reading them a book, or just plain handing out hugs and giving knuckles. But I don’t mind any of it.
While I haven’t had much time for myself lately, it’s okay, because my son only has one shot at being helped early. Now is the time for the big push. He has made some great strides in the last few weeks and we know it’s from supports my husband and I have sought and have been providing both ourselves and through therapists. Now he will have access to even more and for that, I am so relieved and thankful.

So no, I don’t have it all together and this is not the least bit easy. I have a lot to learn. It’s not as cut and dry as heart surgery (but thank God it’s not heart surgery, again!) I am exhausted most days, cannot sleep most nights, and am often times the primary parent caring for Luke when he is struggling. He and I have a very strong connection that is different from that of he and his Dad. Being able to calm Luke comes very naturally to me and while it’s not always foolproof, most often I can at least desecalate and stabilize, and bring him comfort.
If I can ask one thing, please, educate your children, educate yourself. Talk to your children about the beauty of a world filled with differences. Kids are perceptive; they know when a child looks differently, acts differently, or talks differently. And maybe one other thing – stay connected to the people in your life. If someone drifts away, there may be very good reason, but perhaps not one they are able to, or can share at the time; don’t assume, don’t judge. Your text, phone call, offer to go to lunch or grab a coffee, will speak volumes to them, and could very well be the thing that gets them through some pretty challenging moments.

Remember that this life isn’t about YOU. This life is about others. What joy can you bring to someone else. How might you ease their discomfort. The measure of a life well lived isn’t in the loud displays, accolades, and self-seeking recognition. It’s in the quiet moments when you choose to be a conduit of love and pure acceptance to someone else and no one else knows – it’s between giver and receiver. We can all strive for this, every day.