I freaking hate you.
I hate last night. I hate the blindsiding meltdowns. I hate lifting him from off the floor where he fell asleep, tears stained on his cheeks. I hate punishing him for something wrong he has done, because I can’t tell if it’s his Autism or blatant disobedience.
I hate that everyone knows me, not for Becky, but for “the mom with the Autistic kid”. And that isn't his fault. I hate that Rowen is known for having Autism, and not for his amazing forgiveness. Or for his kind words and giant hugs when he sees his mother crying. I hate that no one sees his huge heart- instead they see a clumsy, unfiltered five year old boy.
I hate the fact that you are his constant companion. He doesn’t get a break from you. The good thing is there are times he forgets you are there, when he is extra happy or concentrating on a task. But those are rare moments. Sometimes I forget about you, too, but it doesn’t last long. You never take vacations, do you?
Autism, you make waking up in the morning really, really hard sometimes. You make falling asleep at night really, really hard. Even when I close my eyes to rest, you are there in my dreams. You never go away; not completely anyway. And I am tasked with the job to make sure my son succeeds with you. Do you want him to succeed? Are you here to make sure he doesn’t? Who and what are you really? Sometimes I think if I knew you better, then I’d know my son better. But you are two different entities, and I feel like I am constantly in a battle to keep you off his back.
I don’t appreciate you. I don’t enjoy you. It is days like this I wish you did not exist. My eyes are swollen and I’m tired, and Rowen is barely making it through the day because of yesterday. Yesterday we had “a bad day”. That is what we call it. A day when everything seems to go wrong and his little emotions get the best of him. And the next morning we are left tired and sad and edgy.
I hate bad days. He hates them, too. He understands. He knows. He asks me how many meltdowns he had that day and I’ll be honest with him. Then, at the end of the night he asks me if we are going to have a better day tomorrow. I encourage him and excitedly tell him we are. I can feel the determination in me when I say it out loud, and I see the hope in his eyes as he smiles and pulls me in for a tight hug.
And in that moment I’m not thinking of all the things he did wrong that day that drove us to having a bad day. I’m thinking of all the things I did wrong. And the things I didn’t do. I go over in my mind all the mistakes I made and how I should have been easier on him. Because he is not like other kids. He has a special companion with him who doesn’t give him a break. A companion who will forever be the thorn in his side. And even I, the wonder woman he truly thinks I am, cannot get rid of you. And I hate you for it, Autism.
So I tuck him in, tell him goodnight, and remind him to stay in bed. As I descend downstairs for some quiet time I know it is just a matter of minutes before I hear his little feet tiptoeing down the stairs, coming to find me for one last hug. I tell myself not to be mad and usher him back to his room.
Then I say a prayer that tomorrow won’t be “a bad day”.
My husband has two good t-shirts. Not because we are poor and can't buy him more. But because he has bit through the collar of every single t-shirt he owns. There are gaping holes where he has gnawed the fabric down to nothing. Every now and then I'll throw one away without him knowing. There are things about my husband many people don't know. The fact that he has Autism is one of those things. Our little Rowen is a living replicate of Dan. I've heard people call him weird, or strange, or awkward. And I understand why.
Living with my husband is weird and crazy and awesome and stressful and amazing. Just like young autistic children stem, Dan has his own coping ways. He paces. He paces so much sometimes when we talk that I get dizzy and either have to ask him to sit down or I stare out of the window until I know he's done. He now uses an app that counts his steps and that gives him such a fulfilling feeling. He walks what seems like 25 miles a day because of that pacing. I'll spend five minutes straight talking to him about something important, only to realize he has been in what I call "real estate land", processing how his client is going to get approved for the house they want. So I have to start all over again as he promises to listen this time. He quietly unhooks me from the breast pump when I've fallen asleep while pumping, and then he puts me to bed. He has to watch his temper and what he says outloud when he's angry, because sometimes his filter doesn't work like a normal person. But he never yells at our children or me. He holds it inside and usually blames himself for everything. Life with Dan isn't easy, sure, but let me tell you a few other things you don't know about my Autistic hubby.
He makes dinner for me every night. And then he gets up and brings me second's while I lay in front of the tv watching our favorite Star Trek episodes. And then he makes me dessert. He pumps the gas in all of our vehicles so I don't have to, and he scrubs the windshield so I can see through it better. He comes home early when a kid is sick. He draws me a hot bath and then locks me in our bedroom and makes me promise I'll stay there for at least an hour so I can have "me" time, even when I swear I don't need it. But he knows better. He makes the kids breakfast before he goes to work. He called me up and cried after reading how I was bullied as a child, and told me he was sorry a dozen times for what happened to me. He surprises me with donuts after a hard day. He holds me when I'm sad and gives me a body massage before bed. He never complains about my gained baby weight, but tells me I'm "curvy" and that I'm irresistable. He jumps up to save our baby when she's dangling from the stairs and giggling. He has a respect and sincere love for mankind and strives to make sure everyone around him is happy. He snuggles the kids at night until they all fall asleep. I find him asleep next to the baby, both of them sleeping soflty, her little hands on his rough, rugged face. She doesn't care that he hasn't shaved. Sometimes I just stare at them like that and wonder how on earth I managed such an amazing human as my husband. God must have sprinkled him with love and sincerety and honor and responsibility and forgiveness. He is ALL of those things. Autism doesn't change any of that.
When I look at my husband, I see a man struggling with accepting himself, with accepting his little quirks and faults, and with loving himself anyway. I see a man who would die for his children, who can't stand the thought of his children suffering. And I see a man who, one day, will meet the Savior face to face, and finally see himself in all his glory and all that he truly is. Without the Autistic hiccups and strange personality quirks. He'll someday be made whole and not have to struggle with accepting himself.
So next time you see him pacing in the hallway or mumbling to himself, remember this post. Remember that under all the strangeness and awkwardness, there is a loving, forgiving man who is doing his best, who loves God and his family and the Lord.
And no Autism can take that away.
Rowen has a heart. Not a normal heart. He has a heart the size of the earth. He always tells me he loves me to the moon. He has no clue how deep my love goes for him, and that it possibly exceeds a trip to the moon. He is a silly boy. He makes jokes with a straight face. He tries to wink and his whole face scrunches into a sweet smile with both eyes closed. He wraps his arms around you so tight when he hugs you that you think you might actually lose circulation from your throat to your waist. And when he cries? That’s a different story. The smile fades, his eyes turn a deep, dark blue, and any trace of happiness vanishes quickly. When he is sad, he is sad. For him, there is no hiding it. He wears his pain or anxiety or fear, for anyone to see. He doesn’t understand pride or embarrassment. He only feels. When he loves you, he tells you, and when he is angry he does not hesitate to make it known. His emotions are sometimes out of control and there is nothing he can do about it. But there is beauty to that, and hopefully someday he will see that. He will be a passionate man. Not one who temporarily cares for you, but permanently and seriously. One who loves you with 100% of his heart. His wife will appreciate his laughter, for he does not give it freely. When he does laugh you know it is because he means it. He is harder to make smile than anyone I know. She will learn that his trust is a bit guarded, but once you have it, you’ve got it forever. Just like his love.
Rowen's eyes. They are the bluest, and the most beautiful I’ve ever seen. If I could look into those eyes and read his mind, I’d do it. Then I’d know all of the complex beauty that our little boy holds in his perfect little mind. He may not feel perfect, and I’m sure sometimes he may not feel important. He has to repeat himself sometimes and work extra to express what he wants. It is a constant battle figuring out our sweet boy. It does not come easy for him. Life may not ever be easy for him. But do you know what is? Loving him. He will never have to work for that. Not now, not as an adult, not ever. He may not know that now, but he will know it someday. That his parents always loved him, and no disability or impairment or condition can EVER change that.
Sweet Rowen. He may say he loves me to the moon, but I love him much, much more than that. And someday, when he steps through that veil, when his life is over and it's his time to move on, all of his little complex issues and struggles and anxieties that constantly push him down, will fall away from him. And then, his eyes will see clearly and he will finally understand how much he was loved. And how valuable he is. And we will see that sweet, perfect smile, without any trace of sadness or fear. And he will finally be completely happy.
Until then, I will try to enjoy this crazy ride with him, as I wake up to sloppy kisses and tight hugs.
He won’t be little forever.
But he’ll always be mine.
He is so little. His arms are small, his fingers so slim and gentle. His little frame finally surpassing 20th percentile. His clumsy limbs make it hard for him to run without tripping, and his skinned knee and tear streaked face lets me know he has fallen yet again. But he wipes away the three tiny tears that have fallen, he stands up tall, and I cringe as he takes off again. His blue eyes are deep and beautiful, his lashes so dark they almost look black against his pale face. He laughs when I spin around with him in the middle of the room, and he giggles when it turns into crazy dancing. He grips his daddy's hand so tight when we go hiking, that it makes it hard to climb the mountain. His little red face and shaking body lets us know he does not approve. I ask him why he is scared and he says he doesn't know. So Dan picks him up and carries him until he calms down. And then we have him try again, each time getting a little braver. It isn't until we are almost off the mountain and heading to the car that he lets go of my hand and exclaims, "I did it!". And I'm more proud of him than I can ever tell him. He wraps his arms around our necks and begs us to snuggle for five minutes in one small bed, and we do, all five of us, just to see that smile.
That smile. He can manage seven popsicles out of us in one sitting, just with that smile. When he wakes in the middle of the night and crawls into bed with us, I can feel him clinging to me, whispering, "Hi mom" into my ear, and I wait until his breathing slows and he drifts off to sleep, so we can quietly carry him back to his own bed. With a frustrated cry he flings his tablet and buries his face into his hands, because he can't spell, or can't trace the letters perfectly. I insist he play a game that isn't so advanced, but he refuses stubbornly, and retreats back to the game with tears in his eyes. When someone cries, you can see his mind racing, trying to figure out how to help them. Once when I was crying, he didn't say a word, he just put his arms around me, and when I was done, he said, "I love you, mom". I can imagine his four year old mind, not able to communicate like he wants, his words sometimes unrecognizable. His small body not quite strong enough, sometimes falling instead of running. I see his fear of heights and doctors. I can imagine his heart, so full of love for mankind and anyone that breathes, and yet others don't understand. They see a little boy who hugs too much. But I see a man in the making. A great one. A man who respects his father and comforts his mother. A man who drives hours in the middle of the night, to pick up a crying sister who needs her brother's love. I see this all, when I look into Rowen's eyes. I will help him. I will help erase that doubt that I see in his eyes, placed there by little disabilities in him that hold him back. But these disabilities can't extinguish his spirit, his fire. Autism is just a word. Disorder is, too. Rowen defines Rowen, and the love he has for the world around him is so bright and so strong. Nothing can break him.
Someday his tears of frustration and pain will be replaced by pride and courage. He may not feel understood, but I understand him. And I will keep helping him up until he can do this all on his own. Until then, our hands will be there for him to grasp when that hike may seem too treacherous and scary, his father's arms open, ready to carry him up when his legs fail him.
And someday, when this four year old boy isn't little anymore, and his once clumsy body stands strong, he will bravely exclaim once again, "I did it!" And he will look up at us with that smile.
And it will all be worth it.
Pain can do very interesting things. It can linger after a heartbreak. It can suddenly and tragically take the place of happiness, in an instant. Or, it can teach you things you didn't realize you needed to learn.
It was Christmas Eve, and I had just put the kids down. I kissed Dan, and headed to the store for candy and gifts for the next morning. I got in the truck, just as I normally do. I walked into the store with a little list, just as I always do. But something was different. I felt as though I was walking in a fog. I had a feeling in my chest. As I looked around the store at all of the busy shoppers, I noticed something. Someone. She was there, in the isle, looking at clothes. Her belly was round, and she must've been about 8 months pregnant. I watched her from afar, unnoticed. I stood there, staring at this stranger who I didn't even know. After a quick moment I found my way out of that section and headed to check out. I must've seen three different pregnant women in the store that night. By the time I was in the parking lot, before I even got to my truck, my whole body was shaking and I couldn't get the door open fast enough so I could lay myself on the steering wheel and cry. And I did. I cried and I cried and I cried some more. And then I realized why. I'd been so caught up in the day, that I hadn't remembered what anniversary was coming in the morning. We had lost her. Seven years ago, on Christmas day. She would've been seven. All month long I had dreaded the 25th coming. It's like that every year, you know. I hear Christmas carols, I see the lights. I see newborn babies swaddled in their mother's arms, and honestly, I just want to sit in the corner and cry. It took one stranger at the store to bring it all back for me, and the pain was crushing.
So there I was in the driveway of my home, alone in my truck. I sat with my phone in my hand, my sister's number ready to dial. But I knew it would ruin her Christmas Eve if I'd called her crying. What do you say to a phone call like that? And there was nothing anyone could say anyway. No words to mend a heart that knows there is no hope. Not in this lifetime, anyway. Miscarriage is hard and cruel and viscous, and it does not care. Instead, it leaves an aching and a haunting that comes and goes, but never really leaves.
And so I sat there. Feeling forgotten, sad, angry, and oh so miserable for myself. But, after a moment, I pulled it together, went inside, and there my husband wrapped his strong arms around me, and held me until I was done weeping. Then, we talked about what she would've been like.
And it was that moment with my husband that I realized that when I think of this loss, it doesn't have to be all about the pain. It can be about the future. Pain is strong, but something else is just as strong, and even stronger. The love of God. He didn't take this unborn baby from us and leave us broken. He's keeping her for us. In a place much bigger and brighter and more glorious than this world could ever be. I may not see that very clear every minute of the day, but I do know it.
It wasn't but a few months prior, we were in the middle of a prayer. We had just prayed about her, when suddenly, after our prayer, Emma said, "Her name is Naley". It was a magical moment. It seemed as though Naley was there kneeling beside us. Little Naley. We talk about her, we pray about her, Emma even has conversations with her and includes her in her games. I know we are an eternal family, and we will get this little girl some day. I know that where she is, there is beauty and bright lights and love.
Someday Emma won't have to pretend that her older sister is there with her, playing unicorns & horses. Someday Emma will be able to wrap her arms around her sister and tell her herself that it was Emma that gave her that beautiful name. We love you, little Naley.
You will be ours someday xoxo.
Sometimes in life, we are reminded of things, or people. Sometimes those reminders come quickly, and scary, like almost losing someone you love. Then, there are other reminders that come quietly, softly, and if left unnoticed, will sadly drift away in the wind, as if they never existed.
That was my kind of reminder last night.
He didn't know. My husband, that is. He knew I was sick that morning, but he didn't really know. He kissed us all goodbye and left for work. Within minutes I was running in and out of the bathroom, feeling sicker and sicker. By the time the kids were eating breakfast, I had thrown up a handful of times, nearly fainted, and wanted to die. But he didn't know. When lunch came around, I was literally making a mental note to give Emma the phone in case she needed medical help for me. I had practically made a bed in the bathroom, the kids had watched television all-morning-long, and two boxes of cereal had been poured out completely onto the carpet. And yes, they were eating it. But he didn't know. When it was time for the baby to go down for her nap, I had actually contemplated not putting her down, because I couldn't make it up the stairs. But I managed it. When I came back down I found a place on the floor, in the corner near the couch, where the kids couldn't see me, and I laid there and cried. A lot. It was the worst pain I had ever felt. I honestly thought I wasn't going to make it. So I said a prayer. I begged that God would help me make it through so I could take care of my kids. And I prayed that He would send me someone. After a few minutes, I found my way to the bean bag and fell on it.
As my kids stood there and stared at me, at the one person who was supposed to be taking care of them, I wondered what other sick women do when they felt this way. I assume they suck it up and get their children dressed, feed them something not spilled out all over the floor, and do their duties. I wondered if this 24 hour sickness was going to lead them my sweet children to cheating on tests, lying, or becoming serial murderers. Had I told them I loved them that morning, had I given them their veggies? Did I even get them dressed? I suddenly felt like the world's worst mother. And I felt completely alone. It was in that moment that I honestly didn't think I could make it another minute.
Then, something happened. The front door opened, and there, standing in the doorway, was my husband. As he came in and set his stuff down, all I felt was relief, and love. He had left work to take care of me. And as he came into view, I sobbed.
He drew me a bath, full of eucalyptus oil and medicine, and took the kids out for some fresh air. As I laid in that tub, I thought about him. About how dedicated he was to his job, and that it must've taken something strong to tell him to come home. As I listened to him gathering little jackets and little tennis shoes, using his silly voice to make them laugh, I was reminded of something. Friends don't always come in wrapped-up perfect packages like we think. It's not always your bestie from high school whose number shows up on your speed dial, or the girl who you share parenting stories with, or that best friend who brings you cookies when it's your birthday. It comes in the shape of something else. Someone else. My husband. He didn't know I was going through this, but Someone up above did.
As he sang me to sleep last night, I wanted so badly to tell him about my prayer. To thank him and tell him what he meant to me. That he saved me. That there is no one else I love more. That he was my friend. But, he had kids to take care of, cereal to clean up, and a house to restore.
Maybe I'll tell him tonight.
I love you, Dan.
"You're my 2nd best friend," he told me, as I sat across the room from him. I don't think he will ever realize how much that meant to me.
My Papa. We sit together and talk about his childhood. He makes me sing when I don't really want to. He tries to slip money into my hand when I hug him goodbye. And I hold his hand when he cries. I don't care that I'm not number one on his best friend list. I'm just grateful to make the list. He always asks me how I was able to get out of the house, without the kids, and my husband, and all the things he must think I have to do. I want him to know it is no sacrifice for me. Sacrificing means giving something up for something of possible less value. Is that the case? Not even close. I love him because he is worth loving. He's worth the 45 minute drive. He's worth all of it. I treasure those moments. And when he's gone, I'll treasure them even more.
I think about what it must be like to lose the love of your life after 68 years together. I watch him as he stares at her framed pictures on the wall. "I miss her so much," he whispers, with tears pouring down his face as I squeeze his hand. It's all I can do to not break down myself. I want to say, It won't be long, Papa, you'll see her again. But how do you say that? You don't. Instead, I cuddle up next to him, kiss him on the forehead, and tell him how much I love him.
Someday my own children will be comforting me when I'm older, and I'm sure they'll visit me and hug me and tell me how much they love me. I hope I am not a burden or a sacrifice for them, but a really cool person who tells fascinating stories about my own childhood, like my grandfather does for me. From tales of boxing, horse racing, farming, guitars and music...to growing old with the one he loved so much. It's what I will always remember about him. And I hope one day, when it's my turn to go, and the clouds part, I will look up and see a healthier, stronger, happier man standing there, waiting to embrace me. His hands won't shake, his voice won't tremble. He'll be bright and full of life. And I'll hug him so tight. And I'll ask him quietly in his ear if I'm still his 2nd best friend. And hopefully, just maybe, I will be.
I pulled up, knowing I only had a few minutes to spend with him. I was on my way out of town and I was already late. I walked in and there he was with my dad, sitting on the couch where Nanny used to sit. Sweet Papa. I sat beside him and held his hand. After a few minutes he asked if we could sing a few songs together. In that moment I thought about the last time I'd played the guitar months earlier, when Nanny was in the hospital. I'd practiced her favorite song all night so I could play it for her at her bedside. I drove, with bruised fingers, as fast as I could to the hospital with my guitar, but it was too late. And I cried.
But I couldn't tell him that. And oh, how I wanted to play with him. So he pulled out his guitar, and my father took his, and the three of us sang a few. He still played beautifully, only missing a few beats. It was funny, he still beamed holding onto that guitar. It was as if the last fifty years hadn’t happened, and he was still that young man whose hands could play anything on that electric guitar. Only now, these hands were older and more unsteady. But still amazing.
So we sang, talked, and laughed. And then we put the guitars away. I told him how much I loved him, and after saying goodbye, I got in my car and drove the long drive to my destination.
I thought a lot about my grandfather while I drove. I thought about my father. I remembered playing guitar with them, and singing. I remember secretly watching my father’s fingers as he strummed his guitar, so that I wouldn’t miss a chord. And I remember watching him watch my grandfather as my grandfather played his guitar. How I would wish those jam sessions could last forever. How I wish my grandfather could last forever.
But none of us do.
So maybe tonight I’ll take my guitar out of the closet. I’ll dust it off. Perhaps I’ll print out one of his favorite songs and learn to play it. I’ll show up on his doorstep, ask him to tune my guitar, and then I’ll tell him I learned that song I’ve been meaning to play for him. He’ll smile that smile. And then I’ll play it.
He’ll tap his foot to the rhythm as we both strum our guitars and sing. And although I am an adult, and he’s a bit unsteady, I’ll be that little girl again, looking up at a giant of a man, playing this amazing instrument with strong hands.
And we’ll sing.
And his voice will be as beautiful to me as it ever was.
I watched my grandfather cry.
It was more like watching the strongest, greatest rock you've ever seen, suddenly crumble. And it was heartbreaking.
I've never seen my grandfather shed a tear. He was a boxer, a farmer, a musician, a strong willed man. One who you just didn't mess with. His hands could strum a guitar like butter, and his voice was like gold. I never thought I'd see him like this. It must've taken one good woman to bring him to this.
And she was indeed.
"Sing!" Nanny would say to me. I always felt awkward sitting with my Papa, my dad, and my sister, as we strummed our guitars and sang. Mirranda sings like a bird, and they've all played for years. Man, they were good. They were like stars. Bigger than life. I wanted so badly to be like them. So I learned, too, although I knew I couldn't compare to their talents. But wouldn't you know, every time we'd get together to play, I'd hear a voice behind us urging me, "Now you sing, honey! It's your turn, sing one of your songs!" She wouldn't relent. "Okay, Nanny," I'd say. She had a favorite song, and she asked me to learn it, so I learned to play it and sing. Why she believed in me so much, I'll never know. Why she enjoyed listening to me sing, is a mystery to me. But, for her, I would.
I see her sweet smile, I smell her cookin', and I swear she's almost in the room. I can even hear her voice. That sweet southern drawl. After spending more than five minutes with her I found myself talking in that southern way. Her accent was the most beautiful drawl I ever did hear.
He sure did love her. I didn't realize just how much until he sat down beside her in that hospital room. He wrapped his once very large and strong hands softly around hers, and kissed her on the forehead. It was heartbreaking and touching at the same time. For the first time in my life I saw who he really was. Who he really, truly was. A man in love. Not a boxer throwing punches in the ring. Not a singer who could outplay anyone on the electric guitar. But a man whose heart was broken. A man who loved so deeply and so true, that it didn't matter that there were four other people in the room....he held onto her. And cried.
The day will come, I know it, when they will hold each other again. In a beautiful, warm place. He'll weep once more, but the tears will be different. He'll hold her hand again, but this time she'll hold it back. They'll embrace again, and no more hearts will break. No goodbye's. It will be for forever next time, I know it.
She was always telling me to sing. Now it's her time. Sing, sweet Nanny.
It's your turn.
Sometimes I wonder what it would be like in a world without fear.
I'd put my kids to bed each night, and not wonder if she'll be waking up at midnight with a high fever and crying. I'd get more than 5 hours of sleep. I'd be more likely to give my children more one-on-one time instead of rushing around to make sure my kitchen was clean in case someone stops by unannounced. Who cares about that anyway?
I bet you I'd pet more animals and have less nightmares about nation-wide disease outbreaks if I weren't so afraid of germs.
In a world without fear, I'd just be me. I'd laugh more, live more, smile more, love more.
I'd eat meat. My husband would love me even more if I just took a bite of that dead rotting flesh, known as the hamburger. Or if I lived a little and took a swig of that Dr. Pepper in his hand. Yep, he'd definitely love me more.
But we don't live in a safe world. Our world is filled with all kinds of fears, and I can almost guarantee I suffer from living with at least 80% of those fears.
But I can't change that very easily. People still see what they want, say what they want. They will still see a hyper mother who is over-reacting, or perhaps a woman who is over-protective, who hibernates for 5 months with her newborn baby because she's afraid he'll get sick.
But I'm me. And these are my fears. And we're in a world full of them.
But you know what's beautiful to me? The knowledge that someday, this world will be different. There won't be any fear or pain or tears, or late-night thermometers that read 103.6. That's right. I'll stop at their doorways to watch them sleep, knowing in the morning they'll wake up perfectly fine. Then I'll go to bed calm & assured.
There won't be any guilt when I pass a homeless man, or tears shed every time a news story talks of a child being abused.
No. There will be hope.
A world without fear. It seems so distant & foreign.
But for a girl who lives with constant fears, that sure sounds like heaven.