My dear autism and special needs parents

My dear autism and special needs parents:

On the days you feel your worst,

remember that you are beautiful

On the days you feel like you don’t know what you’re doing, know that you are brilliant

On the days you feel exhausted and can’t go any further, look back and see how far you’ve come

On the days you feel you can’t handle another battle,

look at your scars and be proud of the ones you’ve won

On the days you feel alone, know that you never are…

Even if you don’t think you can push through, you can – one step, one breath (one coffee, one set of eye pads) at a time💙

Sleep is so often something we don’t get as autism parents. Our kiddos can have a particularly challenging time falling or staying asleep.

For a while our challenge was the staying asleep. Now it’s BOTH falling asleep and staying asleep.

I often wonder how long it takes before the human body can’t take anymore…

I wonder how long I can function on such little sleep.

I wonder how my child can have so.much.energy. without having slept.

And then from somewhere, the strength keeps coming.

Moment by moment, breath by breath, I hold on to hope.

Hope turns the impossible into possible…and sometimes that’s all we need to get us through.

Hope for this moment, hope for this day. Hold on to hope my dear friends.

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For The Mom Who No Longer Feels Beautiful

(Written June 2015)

The other night I was taking a shower and gazing down at my post baby body. I’ve always been hard on myself about my physical appearance; in fact, I have been mean in the way that a person can only be mean to herself.

For over a year I have loathed my body for basically rejecting my pregnancy and forcing the early delivery of my baby who already had to fight harder because of his heart. Instead of cataloging each of my flaws and all the ways I am not as fit, or toned, or as tight as I used to be, I was thinking about how I feel beautiful. There is another side of the post baby body, the beautiful side. And actually, that side has nothing to do with physical appearances.

When I see my son smile at me, I feel beautiful. When I see myself through his eyes, I’m pretty darn close to perfect.

Now does this mean I actually look particularly beautiful and perfect these days? No. In fact, some days I look like a certifiable hot mess. I still have all these crazy baby hairs growing where my normal hair used to be. Hair that has regrown is now being plucked out by little toddler hands and if I could ONLY keep my boobs IN my bra AND in my shirt…if you have a toddler you will understand. My child’s hands get stuck on and attract everything. I am a source of constant interest – picking, grabbing, pulling, yanking, poking – every part of me is fascinating. Despite them being the “tightest and toughest” my OB had seen, my stomach has not totally returned to what I now appreciate as my pre-baby abs. I have dark circles (hallelujah for Maybelline Instant Age Rewind Corrector!) that I never used to have and I swear – no, I KNOW – I am getting wrinkles. Maybe you can’t see them but I know they are there. But I can tell you this, when I am playing with Luke, and he is laughing at something I did or said, if you held a mirror up to me in that moment, I would fully expect to see my very best self staring back.

To him, my physical appearance is completely irrelevant. He doesn’t care what I wear, how soft or hard my body is – in fact, I imagine he likely prefers it soft. He doesn’t care if I wear makeup, fancy clothes or have my hair done or even if I’ve brushed my teeth before early morning kisses. He doesn’t care because I’m his person. When he cries, when he needs his mommy, it doesn’t matter if I’m wearing a stained t-shirt that hasn’t been washed in days or I’m decked out in an evening gown. Mom is mom whatever she looks like. I am comfort, I am reassurance. I am his constant.

There will probably come a day when my appearance will matter to him. One day when he is a teenager (or before) I’ll be the mom whose appearance either reinforces his status or threatens it. But for now, I’m his everything. I am perfect to him. And there is something about looking at a truly remarkable little person who you helped to create, that can make you feel darn beautiful. And when he looks at you with huge, soulful blue/green eyes and puts his arms out for a hug, well, frankly it makes me feel stunning. It’s one of the most fabulous things I’ve ever known. And my body – it was a home, and homes are meant to be lived in with nicked trim and scuffed walls, each with its own story to tell. I would rather be well-worn and scarred from love than be “perfect” any day.

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.

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.

Cherish the Valleys

Sometimes we can spend our entire lives waiting. And when we get there, our eyes are still set on the horizon rather than the ground beneath our feet. Sometimes we spend years climbing one mountain, we forget to live in the valleys between.
But what if the valleys are where memories are made? What if the valleys are where life is lived? What if this is the only time you have been given? Can you say you are using it wisely?

Time has a way of creeping up on you. I lived my life waiting for the “next” until experiencing life’s fragility taught me differently. It taught me to hold tightly to the moments. It taught me to live fully without holding back, embrace the mess of life and embrace the beauty. It taught me to cherish the valleys.
What if we spent our every moment looking ahead that we missed the very earth beneath our feet? What if we lived our whole lives hating the discomfort, hating the discontentment, when really, those things are what this life is made of and where the real growth happens.
Forge more life into each of your days! Cherish the valleys, the soil beneath your feet. Like the mighty oak, anchor your taproots firmly, then spring up and branch out; reach and stretch and allow yourself to be pulled toward the sun. When the winds of adversity blow, bend – but don’t break – and absorb all that this life has to offer.