Lauren Casper » Embracing the Story

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Last night my husband was working late and I had just finished tucking the last little one into bed. I came downstairs and began to tidy up the dinner dishes, then walked into the living room where our dog was curled up in her bed dreaming about chasing squirrels or birds or deer. The house was quiet and calm again. I stood in the middle of the living room for a moment trying to breathe in the peace but about a half second later tears were streaming down my face. So I sat down on the couch and wept.

I’m tired. We haven’t slept much for the past month (six years, really.) The 11pm, 1am, 3am up for the day wake ups are wearing everyone down to the bone. I’ve got a knot between my shoulder blades from the constant tensing that happens when I’m trying to keep someone from hurting themselves or breaking the furniture or running into the street or hurling something across the room. My throat is a little sore from the talking, pleading, reassuring, and crying. I need a nap… and maybe a massage.

But that’s not why I’m crying. I can withstand a pretty good amount of physical exhaustion and most days my patience, while at times runs thin, doesn’t run out. No it’s not that. It’s the break and the cracks and the throb in my heart for the people I love most in this world. I look into the face of my little person – who I would give both kidneys to in a heartbeat – and watch as trauma and fear and anger and hurt pours out. It’s the pain of watching that little one suffer and not know how to help. There are some hurts too deep for even a mother’s love and it breaks my heart.

The words a doctor gave us over a year ago are still ringing in my ears, “This isn’t a sprint it’s a marathon.” I know that is true, but that do you do when you get to the point of the marathon where your muscles are cramping and you’ve hit a wall of fatigue? You’re trying to pace yourself but all you can do is gasp for air, reach for water, and let out a groan. The finish line is nowhere in sight and you’re feeling desperate… and scared. The future can be intimidating when you just aren’t sure tomorrow will be any better than today. And what if it’s worse?

I’m all out of answers, all out of energy, and running quite low on hope. I have just about nothing left and that’s when I find myself weeping on the couch with only one prayer left.

“Jesus the one you love is sick.” *

I have to remember that Jesus loves my children more than I do, as hard as that is to comprehend. I have to remember that God sees us even when I feel so very unseen. I have to remember that he is still with us, even when I feel lonely. I have to remember that our story isn’t over yet, even when I feel hopeless. And today? Today I just have to do the next right thing, knowing that sometimes the next right thing is to sit and cry on the couch… and then it will be to get up, dry my eyes, and start all over again. Because the one I love is sick and I’m in this race until the very end.

* John 11:3

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mama-and-mareto-kiss

Skiddle merinky dinky-dink, skiddle merinky-doo… I luvvv youuu!” 

Mareto learned a new song at school this week and he’s been singing it us each day. There’s nothing quite like hearing your child tell you he loves you, whether it’s in song or a spontaneous moment of connection. Mareto has taught me so much about love in his four years of life and I’ve come to believe our children are our best teachers. Love is so much more than saying or hearing the words though…

Love is expressed in many ways, and as nice as the words are to hear, they are unnecessary to express true love. For a long time Mareto struggle to verbally express anything – needs, wants, thoughts, etc. But I never doubted his love for me just because he couldn’t say it out loud. Mareto expresses his love through his actions – it’s in the way he can’t fall asleep without one of us laying next to him until his breath gets slow and deep and he drifts off. It’s in the way he grabs our hands and says, “come and play!” in his sweet and cheerful little voice. It’s in the way he runs out of school and into our arms every day because he is so excited to be with us again. It’s in the way he comes to wrap his arms around me when I stub my toe and asks, “mommy got a boo-boo?” Words are overrated when it comes to love. Mareto reminds me every day that love is a verb.

Love covers a multitude of mistakes. There are evenings when the kids are in bed that I replay the day in my mind and wish I’d done so many things differently. I feel sadness, regret, disappointment in myself, and a whole host of negative emotions that don’t do any good. Sometimes I feel like I fail so much as a mom. As I think back on the day I wish I’d been more patient, calmer, more creative, more energetic, more… anything. Maybe if I’d just been moreMareto wouldn’t have had a two hour meltdown. Maybe if I’d just been more he would sleep better at night or eat better at meals. And then I hope — I hope my attitude didn’t upset him, I hope I didn’t make him sad by not understanding his needs, I hope I make him feel safe, secure, loved, and understood.

But do you know what happens? The most amazing thing — Mareto wakes up the next morning delighted to see me! He literally squeals in delight every morning and runs full speed into my arms. He kisses me all day and snuggles me when he’s tired. He runs to me when he’s hurt and grabs my hand when he is hungry. Despite all my failures Mareto still loves me and forgets (or doesn’t even notice) when I don’t get it quite right. He doesn’t hold my failures against me – he loves me anew every day.

Love overcomes. I’ve struggled with a lot of fear and anxiety over the years – anything from the fear of flying to fear of disappointing others and the unknown. Mareto has taught me that while love doesn’t always remove our fears, it does allow for courage and the strength to walk forward in spite of our fears. I’ve flown across oceans simply out of total love for my children. And when, less than two years later, a doctor diagnosed him with autism I was afraid of what the future held for Mareto, for myself, and for our family. But love had me staying up reading and researching late into the night. Love had me setting up evaluations, therapy schedules, and rearranging our life to fit our new normal. Love means that I fight for his rights and call “professionals” out on their behavior when they aren’t working in the best interest of my son – even though I hate conflict. Love causes me to write, and speak, and share, and advocate for my son and others like him, because when you love someone you do everything you can to make their world a better place.

Loving Mareto has stretched me in the best possible ways. Loving him has, at times, been sacrificial and selfless, but it has felt very selfish. Because he has loved me back with the most pure, innocent, uninhibited, and beautiful kind of love. Mareto has not taken from my life, he has only added to it. He has taught me about love simply by being himself and loving better than anyone I’ve ever met.

This post was written as a Valentine’s Day special for Autism Speaks in 2015. 


 

ItsOkayAboutIt_v6For more of Mareto’s sweet and simple, but remarkable life lessons pre-order my book, It’s Okay About It today! It will be in stores on May 2nd.

Living with my five-year-old autistic son, Mareto, is a lot like playing the telephone game. He blurts out little phrases that have their origin in something he saw or heard, but by the time they make their way through his mind and back out of his mouth they’ve transformed—often into beautiful truths about living a simple, authentic, love- and joy-filled life.For all those looking to recapture the faith, simplicity, wonder, hope, courage, and joy of life, It’s Okay About It provides a guide to look inward and live outward, to discover the most wide open and beautiful life possible.

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truth helps us to be brave,

A couple summers ago my parents took the kids for the whole weekend so John and I could catch up on some much needed sleep, enjoy a few dates, and just have some much needed alone time. Saturday was rainy and slow so we decided to hit up our local antique mall to browse at length without having to rush before the kids got bored and agitated. I wasn’t expecting our trip to be cut short by racism.

We didn’t get more than halfway down the first row of booths before a display stopped me in my tracks and made my blood run ice cold. I stood with my jaw hanging open and my eyes widened in shock at the small glass cup with a picture so offensive it caused my hands to shake.

alligator

I slowly looked around the booth and found it full of similar merchandise. Shelves were filled with figurines, cups, framed pictures, and more – all with overtly racist messages and depictions. I choked back tears of rage at the blatant hatred and, likely, ignorance I saw displayed there. My hands continued to shake as I grabbed that cup and marched to the front desk.

“Whose booth is this?” I asked while holding up the offending merchandise. The young lady behind the desk looked nervous and explained it was owned by a woman who buys a lot of her stuff online to stock her booth.

“And you allow this type of thing here?” I pressed back. She didn’t own the place, she explained, and she told me they’d received a couple complaints before but it’s not their place to dictate what vendors can sell in their booths.

“Do you know the history of this particular image?” I asked, continuing, “Did you know that this was actually something that happened? That black babies and children were used to lure alligators out of the swamps in Florida and Louisiana? They were used to ‘chum up the waters’ for slave owners and the white men who kidnapped these kids?”

She shook her head while my hands continued to shake.

“This is awful and it’s racist. I have black children.” I told her. “How do you think it makes me feel to see this displayed in your building?”

She shrugged. “I didn’t know it really happened.” Was her only weak reply.

“Well it did and this is incredibly offensive and I needed to tell you that.” I said, as I placed the cup in front of her and walked out the front door.

It ruined the rest of my day, to be honest, and I still get a little angry any time I drive by that antique mall. But what I really wondered is why I felt the need to tell the lady at the counter that I have black children. Why did that matter? My anger and shock was just as reasonable and justified without that information. Did it make the offense a little more personal? Yes. But would it have still made me angry even if my children weren’t black? Yes.

We belong to each other, and as GDM says, there’s no such thing as other people’s children. We don’t just care about things when they personally effect us. We ought to care about injustice and racism and oppression whether we are directly impacted by it or not. And we need speak up in the face of it.

I have often wondered how many people walked right by that booth in the antique mall and were disgusted but kept walking. I have wondered how many kept walking because it didn’t directly affect their children, their families, their lives. I’ve wondered what would happen if every single person who was offended by that booth went to the front to express their outrage. Maybe the booth would be shut down. Maybe the people of color who live in my mostly white city would feel a little more at home, a little more loved, and actually invited to the table if everyone just spoke up.

My best friend here is a woman of color raising three beautiful children and she’s said this about how it feels to live in a place where symbols white supremacy have long been tolerated: “It makes me feel oppressed, it makes me feel alone, it makes me feel scared; holding onto my children’s hands a little bit tighter.”

It’s been suggested to me recently that if I profess to be a Christian I must remain silent on politics. I can’t do that. As much as I’ve hated confrontation my whole life, I’m growing more and more comfortable with having hard, but civil, conversations with people who hold different views and beliefs. I suppose it might be easier to simply stop sharing my views altogether in response to some feeling that to do otherwise is “off brand” for me. I’m not willing to do that, though.

You see, politics is just people and relationships and community and the world. And if you’ve been here any length of time you know that’s what I am all about. I’m all about compassion and hope and love and living with arms stretched wide open. I’m all about speaking up for good and truth. When I sit down at my computer I try to write with honesty, vulnerability, and transparency in the hopes of my story serving as a reflection of you. I hope that laying my heart out there for you to see causes you to look inward and discover things about your own heart – your hopes and fears and joys and heartaches.  So I will keep writing and keep speaking up even if the topics make us both uncomfortable sometimes.

My faith informs my politics and it is because I love Jesus and try to live my life following the red letter words of the Bible that I speak out on issues I feel passionately about. Every issue has a flesh and blood person behind it and I am called to love my neighbor as myself. A lot of my neighbors are in trouble right now, so I will seek truth and speak in love. Shaking hands and all.

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