Lauren Casper » Embracing the Story

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.

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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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I had a complete and total hysterectomy last summer. I was 32 years old. The day before I checked into the hospital I left my children and their suitcases with my parents, then John and I went out for gelato. He held my hand in the car as I stared out the window and he asked what I was thinking. My voice was thick with emotion as I answered back, “Well… it’s a disappointing ending.”

Sometimes we don’t get the answers we’re hoping for and sometimes the final word on a matter hits like a dagger to the heart.

I’ve known we wouldn’t have biological children for several years. Oh sure, the doctors said there was a miniscule chance (less than 5%) which left just enough room for unlikely hope. But deep down inside I knew. I knew the way some women just know the gender of the baby they’re carrying… I knew I’d never be pregnant ever again. I knew I’d never deliver a child that wasn’t immediately placed in a medical waste bag. What I didn’t know back then was that the part of me that provided a home to those two children, if only for a little while, would soon be placed in a medical waste bag too.

We wrestled with the idea of a hysterectomy for nearly two years. I had scheduled the surgery for December 2015 and then canceled. I took my time thinking through it all, exploring my options, and praying about something that would turn an ellipsis into a period… to move forward with the surgery would be a definitive ending to one of my life’s greatest questions: would I ever have a biological baby?

In the end the decision was easy. I simply couldn’t keep living the way I was. My quality of life had been diminishing due to a horrible disease that caused me relentless pain. John had been missing work to care for our kids while I lay in bed. My stomach lining was eroding from the use of pain killers which landed me in the hospital for more procedures. When it came down to learning that I could no longer use pain medication to make it through the day (and the awfully long nights) the fight was over. To hold out any longer would have been detrimental to my health – both physical and mental – it would have been unfair to myself, my husband, and my children.

So I scheduled the surgery for a few months out, which gave John and I plenty of time to process what this really meant. We had a lot of peace about our decision, and while I was a little frightened of the actual surgery (that whole “what if I never wake up?” question had my nerves on edge for weeks) I never once doubted that it was the right thing to do. I felt a little sad on occasion, but no real big grief.

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I’d done my grieving years before: each time a month passed with me staring at a negative sign on the little white stick, each time the labor cramps started in the first trimester, each time I sat in the waiting room of yet another specialist, every time I drove an hour for weekly injections, and every time another medication caused horrible side effects. I grieved when I went through menopause for nine months at 24 years of age and when the doctor called to say babies weren’t possible. I’d already grieved through the recoveries from previous surgeries and countless procedures. And I grieved during all those nights I lay awake crying from the hurt in my body and the ache in my heart. Yes, I’d already grieved everything I was standing to lose with the hysterectomy. But, I’d also already healed.

My healing came with each month I wiped my face, threw the white stick in the trash and chose to face the day. It was in the arms of my husband and the love of my friends and family as we grieved the losses of two babies born to heaven. Healing came as I stood up for myself and changed doctors and demanded better care. Healing came in the answers… the ones I liked and the ones I didn’t. It came with a slow, hard, quiet acceptance of a life I didn’t expect. It came in looking in the mirror at all my scars and seeing myself as beautiful because of them, not in spite of them. And I found healing in places I never expected: in the deep green eyes of twin toddlers who let me love them for a few beautiful months, on the red brick courtyard of an orphanage in Addis Ababa, Ethiopia, and in a small room the size of a closet in that same city on a rainy Sunday afternoon.

Healing came in casting aside the god I had created and instead finding the God who had already written the most beautiful of stories for me. He redeemed my broken heart, He can certainly redeem my broken body.

But what is profoundly true is while I had nothing but peace and confidence walking into the hospital the morning of my hysterectomy, I was still sad and a little disappointed. And that’s something I’ve been learning my whole life: peace and sadness are not mutually exclusive. Because for all the acceptance and healing I had experienced in the previous years, I still hoped perhaps the ending would be a little different. There was always the thought, “…but maybe…” in the back of my mind.

A few months ago I found myself weeping in the shower. I tried to blame it on my poor hormones that are trying to find a bit of balance these days, but the truth was that I had forgotten for a moment that I was truly and finally barren. The thought came, uninvited and out of nowhere, that maybe I could be pregnant. Almost immediately I remembered that was no longer even remotely possible and the tears came like a flood. It was the first time since my surgery that I had cried over the total loss of my fertility and as confused as I was by the tears, I also recognized them as completely normal.

Today, seven months post-operation, I can tell you that having a hysterectomy at 32 years old was one of the best decisions I’ve ever made for myself. Our family went around the table at Thanksgiving and shared what we were each grateful for that year… I shared that I was thankful to be pain-free for the first time in nearly twenty years. I can’t put into words how much greater my quality of life is now. Mareto says, “It’s like one hundred!

So how do I feel about having a total hysterectomy at 32 years old? Well, a little sad. But mostly I’m incredibly grateful and I am at total peace with it. My life has been filled with deep grief and even greater joy. The things that have sometimes hurt the most have led to the most beautiful gifts. This is just another part of that greater story – one that I wouldn’t trade for anyone else’s.

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