Out of the shadows

The barely tepid water does little to assuage the effects of two exhausting months worth of untreated mycoplasma. My head throbbing to the beat of the pulsating water. A toddler sitting in the bottom of the shower holding a monster truck rally around your feet. Waves of nausea begin to hit. They are an unwelcome side effect of the illness and the cure. Through the water, through the throbbing, through the monster truck competition at my feet I hear the voice of another child, “Hey Mommy. Hey Mommy can I……” Not now, don’t see me now.

It’s a women’s protest day. No one will notice if I stay home. I stay home most days. That’s where my job is. If I wear red it will make no real difference. Wiping boogers and bananas on me is entertaining to the toddler regardless of the clothing color. I can write though. It’s not my intention to get into the politics of the women’s day protest. I want to shed light into the life of a woman. An experience for those who say, “Women have rights. What more do you want?”

I want you to see me. I want you to not see me. I want you to hear me. I also want you not to hear me. See that I’m human attempting superhuman tasks every day while failing every single day. See that I live out each and every day with a Grand Canyon size hole in my world my mom formerly filled. No one’s here but me and the toddler as I try to get house work done. I walk into the room and find the toddler ripping pages out of a small black book. I sit done and take the book from his tiny, sticky hands. Running my fingers over the aged black leather and the gold engraved name, Carolyn Murphy. My child just ripped apart my mom’s childhood bible. See me sit on the floor, devoid of tears. Tears won’t wash anything away, won’t put the bible back together, won’t bring my mom back. I’ll leave the toddler’s salvation to him and God for ripping up a bible. Good luck kid.

I want you to see that everything I do is for my family. Don’t see me irritable and think silently to yourself, “Well it’s that time of the month.” Sure it is that time of the month. If I’m still alive and kicking it’s always that time of the month. After all, you see me when you shouldn’t and you don’t see me when you should. You see me at my worst and never see me in the shadows. The shadows encompass me and they are filled with grief, solitude, loneliness, desperation, angst, and turmoil. You don’t want me to live in the shadows. Neither do I. The world sends the message, “Live out here in the light and don’t you dare bring the shadows with you.” The shadows are a part of me. just as the light is a part of me. To extinguish my shadows is to extinguish my light.

Hear me. When I do something for you hear the silent, unsaid, “I love you.” When I go without something hear me. “I love you.” When I engage fully in conversations that mean nothing to me, hear me. “You mean something to me.” When I tell you a problem don’t try to fix it, hear it. Don’t dismiss it, hear it.

The world teaches you to hide your shadows. Shadows only exist in correlation with light. Ignore the shadows and you will miss my light. Just see me through the shadows.

 

 

Love Forward

I hung my head in shame, embarrassment, and intimidation. Looking out of the blue station wagon windows through my curtain of hair covering my face, I counted the trees as they whizzed past. My mom gently stopped the car.

“We’re here. Go ahead.” My mom orders as I hesitantly open the door and exit the car. The path to the front door looks so long. I walk slowly, hoping this moment will end. Maybe the sidewalk will swallow me up and save me from my impending doom. After reaching the door and ringing the door bell I bite my lip until I feel piercing pain while waiting. As the door opens I see my friend’s mom.

“Ummm. Hi. Um. My mom brought me back because I didn’t tell you thank you for, ummm, having me over to play. So..uhh..I’m sorry. Thank you.”

My friend’s mom smiles and replies, “You are very welcome.”

My smile never reaches my eyes, unlike the redness for sheer humiliation which surpasses my eyes to engulf my seven year old, pudgy face. “Ok. Thanks. Umm…Bye.”

“Good-bye Amy.” she responds to my back as a scurry back to our car. I open the door and climb into the car. I feel as though I’ve gone through a major battle. I also feel as though I lost.

My mom informs me, ” If you ever don’t tell someone’s parent thank you again I will take you back again. You always thank someone for being kind to you. Do you understand?”

I nod through my curtain of hair again. It’s now October 28, 2016. It’s my mom’s birthday. I’m no longer 7. I’m now 37. My mom past away after a battle with colon cancer almost 8 years ago.

Recently my husband and I bought our first house. We have four children. While everyone else was buying houses we were having children. Sometimes we were just being surprised by them, but loving them all the same.  We have an autistic daughter. This year after meltdowns we worried would lead to our child needing to be hospitalized we realized she responded so well to dogs. She lit up as her angst dissipated. We bought a Great Pyrenees, Hercules, who changed our daughter’s world. The people who rented us the house said Hercules had to go even after learning that he is there specifically to help our daughter to deal with this world that is such an enigma to her. They didn’t relent and we looked for a house.

After many months of searching we found the perfect house for our family and our budget. There is this little hitch in the plan called a down-payment.  My father paid the down payment for us.  He later told me of a conversation I never knew took place.

“Your mother had retirement money and she asked me to save that money for you. She asked me to use it for things that would help your family have a better life. I’m the living parent carrying out what your mother wanted for you.”

This hit me as a sledgehammer to my heart. I thought my dad had offered to pay it, but I never knew my mom made plans to take care of me and my family long after she was gone. I never understood why my dad said it was so important to him to make sure we had a house before it was his time to leave this world. The realization overwhelmed me. He wanted to carry out a promise from the woman he loved to the daughter he loved.

One day after we moved into the new house I was diligently cleaning out a old chest that housed relics from my childhood. All the soccer trophies, the drawings, my favorite stuffed animals, and an antique, musty jewelry box that was in my mom’s family prior to my mom’s birth. I opened the jewelry box. As it creaked open I saw a folded, yellow note. I opened it to find a message from my mom. It read,

Amy,

I love you!

I hope you have a great day!

Love,

Momma

Alongside this note is a locket with her picture in it. My heart sank. Weighed down by the love of a woman who would plan beyond her life for her children’s happiness. Immersed in gratitude that I have a father so devoted to both of us all he wanted was to carry out this promise, this on final wish from a mother to her daughter. My heart is engulfed in the tears that don’t find the way to my eyes because I can not tell the woman who loved me enough to teach me about being grateful, thank you. I wish an old blue station wagon could take me to my mother so I could look into her hazel eyes resting above her infectious smile and say, “Thank you Momma. Thank you for loving me so much.”

I can say to my dad, “Thank you. Thank you for loving my mother, thank you for loving me, thank you for loving my family. Thank you for caring. Thank you for carrying out my mom’s wishes after she was gone. You are a wonderful husband, father, and grandfather.” He is. I can say that to him, though the words will never do justice to the gratitude I feel in my overwhelmed heart and soul. Still, I can not tell my mom thank you.

After almost a month of contemplating it with tears and moodiness, sadness and gratitude, the only conclusion I find in my heart is that I thank her by being the person she taught me to be. Teaching my children the be the kind of person she taught me to be. I love forward, not backward. Thank you Momma. Happy birthday. I love you.

Cross Over, Pull Through

 

Standing in the kitchen I feel another explosion of searing, incapacitating guilt crash in waves against my heart.  Sadie, our six year old autistic daughter, just bounded happily into the kitchen on the fourth day of school and proclaimed, “Mommy, now I can help other kids tie their shoes on the playground.” This should cause a parent to feel pride and happiness, yet I feel remorse.

Two months ago  Sadie and her twin brother, Tristan, turned six. I decided I would try to teach Tristan to tie his shoes. It’s about that time and would open up more options for finding footwear. I also decided at this time NOT to teach Sadie. I imagined the meltdowns when she couldn’t do it. I imagined her harassing me at the most inconvenient times to show her again. I feared frustration so great she threw shoes, possibly at people. I didn’t want to deal with that. I didn’t want to put her through that. I didn’t want to put myself through that. I told myself I would wait until she’s a little more mature.

Three times I showed Tristan how to tie his shoes. I didn’t see Sadie anywhere near us. That was intentional on my part. If she saw me she might want me to teach her. Three times Tristan and I went over, “Cross over, pull through.” He is the consummate perfectionist and became frustrated when he couldn’t do it. I simply told him, “Let’s give it a break and try again another day. It takes time.” He agreed.

Two days later Sadie walked into the living room. She beamed proudly, “My shoes are tied.”

“Who tied them?” I asked.

“I did. Cross over, pull through.” She left me standing there in a state of amazement.

It hurt that I doubted my child. It hurt that I failed as parent by forecasting her failure. I constantly try to serve as a buffer between Sadie and the world for my sanity and, as I tell myself, for Sadie. Sadie doesn’t want her world to be buffered, she wants it to be conquered. She does conquer her world. She did it when I thought she shouldn’t be in the school pageant. She conquered the pageant. She did it when I considered homeschooling her to cut down on the daily meltdowns from the demands of  kindergarten. She conquered kindergarten. She did it when I thought she couldn’t play soccer on a team. She conquered soccer. She did it when I though she wouldn’t know her phone number. After hearing it maybe one time, several months ago she was able to write it down for a friend. She conquered her phone number. She taught herself to tie shoes. She conquered her shoes. All of this with little help from me. These crusades of Sadie’s were not without their meltdowns or problems, however, they were not without their successes either.

While I was tying Tristan’s shoes for him the other day Sadie asked him, ”Why can’t you tie your own shoes?”

Tristan stated, “I can’t do it.”

Sadie’s rebuttal, “You need to practice more.”

I need to practice more. I need to practice not hindering my child. She’s a fighter. She may come out of a battle with some physical and psychological bumps and bruises, but she will eventually come out on top. She needs me to back her up, not wall her in. That is easier said than done though. I’m not certain how easily I can accomplish this, but I once heard a dynamic, vivacious, and autistic six year old say, “You need to practice more.”

 

DUM-DUMS

Cup Laundering

​It’s 6 am.  While I am in a state of attempting to fortify my brain with sufficient caffeine I watch in amazement as the baby misses his mouth with a grape and shoves it in his nose. I diligently cut grapes in fourths so the baby won’t choke on them and he impales his nose with the grape. Brilliant. Whatever.

“Mommy?” Our 5 year old son comes to me, clearly perplexed. I love conversations with 5 year olds at 6 am. Did that just say, “love”? It was supposed to be “loathe”. Dang that Autocorrect.

“Yes?”

“Ummmmmmmm…..something really strange happens.” He declares. Something STRANGE happens? Around here? No way, I think sarcastically as the baby sneezes the grape out of his nose. The grape projectile lands back on his tray. Meanwhile the perplexed 5 year old’s twin autistic sister is decorating the kitchen for their upcoming birthday by cutting balloons out construction paper and hanging them from nails on the walls. Nope, nothing strange. Just a typical day. He begins to elaborate, “Every night I go to bed and I leave my cup on the table. When I get up and I’m thirsty in the morning it’s in the dishwasher……WASHED!”

“Tristan, I clean the old cups off the table at night and load them in dishwasher to be cleaned, then I run the dishwasher so the cups will be cleaned. You don’t want to drink water that sits out all night. Since y’all open the doors all day long, flies come in the house then they can get in the cups. That’s gross.” As I lecture a kid on gross habits I inwardly cringe as the baby happily growls and then eats the grape booger. 

“Oh, so that’s what happens!” He appears be thinking as his twin sister is collecting forks to keep in their room for their birthday dinner in four days. I wonder if I will ever see those utensils again not lodged in someone’s body part.

“Do you do it or does Daddy?” Are we still on this line of questioning?

“I do.”

He inhales deeply and states, “It’s okay. I forgive you Mommy.” 

SMOTHER’s Day

Part of my appeal seems to be my ability to keep it real, not to mention my rhyming skill. Ha. I don’t like Mother’s Day. All it takes is a quick scan of Facebook to leave me sighing and turning my phone off.

My mom died. I’ve had eight Mother’s Days without her. Sometimes it bothers me more and sometimes it bothers me less. This year it was more. This year her grave bothered me. I haven’t been to it in about seven years and that typically doesn’t bother me. She’s not there. Her spirit lives on in me and my family and her soul lives on in Heaven. She never wanted nor intended for me to be tethered to a piece of ground. This year the thought of that area of grass, forever hers marked by marble and a name plate, under a beautiful blue sky and perfect weather with an empty flower pot BOTHERED me to the core of my soul.

I’m convinced Mother’s Day is for those whose children have moved out. Those who can have their children over for a few hours and send them on their way as the deadbolt slides into place as the kids are on the porch. To put my view point in perspective, it has been the week, month, year, or possibly the lifetime that inspired the book, Divine Comedy. For those not familiar with Dante Alighieri’s 14th-century epic allegorical poem, Divine Comedy, represents the journey of the soul to God and the nine circles of suffering one must go through to get there. I seem to keep circling the drain in all of the nine circles. Just circling the drain of the “inferno” with my floaties, inner tube, and a snorkel.

I love my kids. I do. I’m also tired. There is so much behind the scenes parenting that goes on. The kind of parenting that doesn’t make for good social media selfies. Writing six page letters to the school system to fight for our autistic daughter to get an IEP, just to finally get it and have to miss the meeting because the baby spikes a fever and has another ear infection. So I have to call the school, rush him to the doctor, and realize I might not be home in time for the kids to get off the bus. During the doctor visit it painfully comes to my attention that the puppy’s (50 pound Great Pyrenees) favorite hobby of chewing on my bra has now led to a severed underwire poking me in the most inopportune of places. That’s a special circle of Hell right there.  Driving home in a state of panic I get home 1 minute prior to the kids. As they walk in the door one of them starts crying because she had to miss drama practice to come home on the bus in case I wasn’t there yet. That conversation didn’t go over so well. I wasn’t pleased with that attitude.

Milk man (AKA Husband and all 4 baby’s daddy) goes to pick up the medicine I couldn’t get on the way home. During this time I am trying to fix dinner while discovering I am missing a few ingredients. Whatever, no big deal. Almost out of nowhere a storm comes through. It knocks the power out, then on, then out, then on, then out…..It became a game for the twins saying, “It’ll turn off in one minute. Haha. It turned off. It’ll come back on in 1 minute.” Until it didn’t turn back on.  Milk man was gone for a very long time due to this storm and he forgot his phone. I couldn’t make sure he and the oldest child were okay.  Fast forward a little while and I sat on the cold bathroom floor crying in the stuffy house without air circulating and hugging a picture of my mom. Two things I rarely do. It was only in this past year I put a picture of my mom in my house.

On Mother’s Day this year I didn’t want to be a mom for one day. I wanted a break. I didn’t want to go to the school with a sick baby during the baby’s nap time to sit in a hot gym for 10 minutes while the kids ate a doughnut.  I did it anyway. I didn’t want to wake up at 6:30 am to eat the breakfast the kids cooked me when I was up until 1:30 am doing the baby’s breathing treatments, I did it anyway. They did a really cute dance show for me which included Sadie dancing to, “Love Yourself” by Justin Beiber. Okay, she didn’t exactly dance. All I can say is that child has a very lucrative career….in the stripping industry. Maybe I watched Magic Mike around her at some point. Tristan danced to Flo Rida’s, “My House” and Kasey, who organized the whole show, did a  hilariously cute dance to this song.

I felt SMOTHERED. I felt guilty for feeling smothered. The kids love me, Milk man went out of his way to try to make it a great weekend, and all I wanted was not to be a mom for a day. Then I realized I shouldn’t feel guilty. I’m only human and I suspect I’m not the only Mom who felt this way. I grateful though, to my husband, kids, and the bra chewing beast for loving me on days I’m not so lovable. HAPPY SMOTHER’S DAY to all who are so blessed to feel “smothered.”

Tears, Tiaras, & Mammoth Dog Paws

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!”

“I’m never going to stop. I’m never going to let you go.”

The sound of screaming drifts past as I am walking the dog. He’s a Great Pyrenees named Hercules and we chose to make him a part of our family for this reason. I replay in my mind the decision we made that led to this moment. Our ten year old daughter has been in her school pageant every year.  This year our five year old daughter with Autism Spectrum Disorder wanted to be in the pageant. My husband and I discussed it at length. All questions, no answers.

“What if she has a meltdown?”

“What if we spend this money and then she can’t handle it?”

“Is there anything we can do to assure it goes as smoothly as possible?”

“Should we tell the people in charge of the pageant that she has autism?”

We eventually decided we would just go for it. Sadie wants to do it. Let her go out there and do what Sadie does. We would have faith in God and how He made Sadiebug. We wouldn’t tell anyone who doesn’t already know. We just want her to be her. No labels, no limitations. Beauty pageants don’t matter to us. There is no judge in the world that is more of an expert on how beautiful our children are than my husband, myself, and God. Girls just like make-up, puffy dresses, and curly hair. All Sadie wanted was a trophy. She did specify, “I kinda want a big one.” More than likely she wanted one of her own because her big sister has several. Sadie looks up to her sister and wants to be just like her. Sadie just wants her own trophy.

In many ways Sadie’s autism worked in her favor. She had a pretty dress, make-up, and her hair was curled. She also finally had the opportunity to wear the black high heels we never let her wear. In Sadie’s mind there was just no question as to how she looked. Having done this many years with our older daughter I know the questions that go through their minds, “Does she have a better dress? What if the judges like her hair more? What if I trip?” None of that entered Sadie’s mind. She only saw herself from her perspective and from her perspective she was a princess.

When she made a mistake on stage and went the wrong way the autism also helped. With our older daughter when she went the wrong way once you could see on her face she was embarrassed and lost all confidence. Not for Sadie. She looked at the X’s placed on the stage to direct the contestants, assessed where she was supposed to be, and went there. No embarrassment, no drop in confidence, just “X” marks the stop.

In a darkened auditorium I sat with her father, her twin brother, her baby brother, and most of the town watching as trophies were handed out. I watched my 38 pound child’s fists clench more with each trophy handed to each beautiful little girl. I silently prayed she could hold it together to realize what everyone in the auditorium, but her, already knew. She was the only child without a trophy because she was about to be crowned queen.

It’s 10:30 at night now. She’s had a day full of sensory overload. I dreaded this. As the puppy finishes his business I stand on the porch in the cool, crisp Alabama spring air and look down at Hercules, who is now whining by my feet. He’s only a puppy. He hasn’t had training yet to help Sadie with her meltdowns. With a sigh I decide to do what we did with Sadie and give him a chance to shine. We go in the door and the scene is more horrific than usual. She is trying to hit and bite her dad. She is contorting into positions you only see in movies about the paranormal.

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!” Sadie screams at her dad who is trying to stop her from hurting herself while also gently applying some pressure to her small body, which helps with sensory overload.

“I’m never going to stop. I’m never going to let you go.” He replies sadly.

“Come on Hercules.” I whisper as he moves with instinct and hops onto her bed. She begins to try to hit Hercules and then looks at him while he puts his mammoth paw across her small belly.  She slowly begins to calm down and quickly she asks for an ice pack for her head that is hurting. She strokes Hercules’ downy, white fur and stares into his big brown eyes. Something passes between the two, a little girl with tears, a tiara, and autism and a gigantic puppy with a patience well beyond his 4 months of life. The crisis is over for the moment.

I sit down and my husband, Sadie’s daddy, is doing his best to try to hold back tears. “It’s just so unfair. It’s such a big accomplishment for her and she can’t even enjoy it.” Sadie’s pain hurts deep inside me and my husband’s pain does almost more. I remember on Valentine’s day how deflated I felt when we took the kids to do fun, free stuff they each would enjoy and it ended with Sadie having a meltdown and having to be carried off the downtown streets amidst all the onlookers. Her kindergarten teacher later told me that the next day Sadie told all her classmates about her exciting day. I said to my husband, “She will.”

I truly believe as a parent of a child with autism, or even without autism, you want to stop the pain. Avoid the meltdowns. Meltdowns are one of the ways children with autism cope with sensory overload. We might be able to decrease the meltdowns, but in doing so we limit their exposure to the world. We limit the opportunities for them to learn to cope. We limit their chance to shine.

I was ecstatic when Sadie got that crown, not because I needed a judge to tell me she was beautiful. If you think she’s pretty in a dress you should see how pretty she is when she, her twin brother, and Hercules are all covered in mud. Or how gorgeous she is holding a frog that slowly, methodically tinkles down your leg. No, I was ecstatic because Sadie’s autism helped her achieve her goal. Sadie used her different abilities to achieve her 5 year old dreams, “Mamma, I want a trophy. Maybe a big one.” Tears, tiaras, autism, and mammoth, white dog paws. They all shine if we let them.

Ribbons Fade

I have to be able to do this, even if I feel like I may throw up. I have to be there. I WANT to be there. I keep driving through the southern countryside, passing cows, and wondering to myself what cows think when they see cars? That is clearly one of life’s truly important questions.

I’m not a social person. One on one I’m great. When I really get to know someone I’m great. It’s the journey between not knowing someone and knowing someone I have difficulty with. I feel like I can’t breathe. I remind myself to take deep breaths and to relax my muscles that tense up painfully without my consent. Someone needs me and there’s one thing I HAVE to see. As I arrive at my destination I sit in my car for just a minute, breathe, and relax while asking God to help me shut out the infinite sounds, colors, noises, and smells I know I will encounter. I remind my brain it doesn’t have to interpret and dissect every single stimuli, just one.

Ok. It’s go time. I  push the baby and the stroller for what feels like a mile, mostly up hill. I come to a white, folding table and hand over a five dollar bill to the woman seated there. I hope they don’t notice that my hand shakes as I reach out for my change. I walk through the gate with bars that reminds me of an ominous, nineteenth century prison and I hear a gunshot. The stench of gunpowder stings my nose. Screaming pierces my eardrums as people are running past me.

It sounds scary, doesn’t it? It shouldn’t be. It’s an elementary school track meet. My mind perceives it the way it perceives everything, as incalculable stimulants. None of that matters now. I’m here and I see a beautiful brown-haired girl with a bounce in her step, freckles on her nose, and a smile on her face. She’s why I’m here. I just got here in time to see her run in her first event, a relay. We aren’t sure when her other event will be called. Over the course of the next three hours she stands with me, talking and laughing, rather than going to the bleachers where all of her friends and their parents are. I have her baby brother in a stroller where I can’t go up in the bleachers. This is not really true. I’ve managed to do the impossible on a daily basis so if I want to find a way into the bleachers I could. I don’t.

It’s too uncomfortable. I will have to figure out what to say. My brain will read everyone’s body language, facial expressions, and tone of voice. I will get mentally drained much quicker because my brain is on full alert with an insurmountable task of assessing and interpreting all of the stimuli. I would worry about what the other people think if they notice me shake, courtesy of the adrenaline pumping through my veins. There’s so much here, but I am here for one thing.

I have a great time. My daughter’s friends show up. The other parents come by and we talk.  Never too many at one time. After all, no one wants to stand up this long,  except me.  I truly enjoy all of them. I just have to hide the fact that I can only handle a few people at a time without my brain wanting to shut down on me. I’m here for one really important thing. I have to conserve my “mental energy” for this ONE thing. I can’t use it all up on stimuli.

It’s time for my daughter’s last event. I break out my camera. This is so important to me. I have to get these pictures.  Pictures matter because through that small window I can stop my brain from focusing on all the stimuli that doesn’t matter and only focus on the truly important scenes. Pictures show all the details my brain sees that are important, without all the details that shouldn’t matter.

As the gunshot sounds I begin snapping away. This moment is perfect. This moment ends in tears. Honestly I don’t know why. I ask my daughter what’s wrong and she said she finished last. My camera didn’t show me that. It wasn’t important. We briefly talked and miraculously she recovered. She recovers so well she leaves right in the middle of my inspirational parenting monologue. I look over and see they are serving their lunch. Right, it was food, not my parenting monologue. Well it achieved the desired result, I’ll consider that a win.

A few hours later I leisurely swing on the porch and wait for the bus to pull up. It rumbles to a stop and one happy kid bounds up the driveway, then another, and then we have an unhappy kid. Oh no. I ask my daughter what is wrong.

She tearfully replied, “I didn’t get a ribbon. Most of the people on our team got a ribbon and I didn’t. I got eighth in my events.”

I tell her genuinely, “That’s ok. I don’t like the number eight. It’s an even number and I don’t like even numbers, they bother me. I would’ve preferred ninth but I’ll take eighth this time.”

She’s appreciative of my eccentricity and cracks a small smile then says, “I didn’t win.”

“That depends on how you see winning. You tried out for the team, you made the team, you ran against 8 of the best runners in the school system, you had fun with your friends, I got to spend time with you, and you enjoyed a day away from school. That sounds like winning to me.” She perks up and agrees with me.

Later that evening she asks if I can wash her track shirt. She is proud of it and wants to know if she can wear it to school tomorrow. I am so tired. I tell her no, she just wore it. She looks a little sad, but says okay and goes to bed. I did wash her shirt. I hang it on a coat hanger in her room with a note on it.

Words never make as much sense coming out of my mouth as they do in my head.  Writing is important because my writing says in a series of letters what my brain could never get out of my mouth in a series of sounds. The next morning my brown-haired, beautiful, freckled daughter would come around the corner smiling radiantly, a bounce in her step, and wrap her arms around me. She says, “I love your smile too Mommy.” The ONE thing I just HAD to see, that smile.  

 

Light it up Beautiful

Out here in the country all things are much more vibrant. The colors, sounds, and the smells are richer. The sun gliding across your skin as the day passes feels warmer and in contrast the stars glowing at night unaltered, as there are no street lights, make you feel that heaven is just a tad bit closer. Out here in the country usually the most uplifting, inspirational moments take place on a front porch. This one is no different.

On April 2, after a day filled with fun, sun, and soccer, I sat on the aforementioned porch with my 5 year old autistic daughter. We enjoyed the breeze as we swung and patiently waited for her dad, sister, and twin brother to bring home pizza. It was a quiet moment between us. Most of them are, neither one of us being overtly fond of conversation. A soft voice breaks the silence, “Mommy, my life is beautiful. God made my life beautiful.”  I looked at this precious child and after a few gut wrenching breaths I admitted, “Yes Sadiebug, God made my life beautiful too. He gave me you and you are beautiful.” We exchange smiles and go back to our silent swinging.

April 2nd was World Autism Awareness Day, where many people choose to “light it up blue” for autism. As an outspoken autism mom you heard nothing from me on this day, nor did I light it up blue. One of the most well know organizations, Autism Speaks, is the organization behind “light it up blue.” Autism Speaks does not speak for my child. They raise an enormous amount of money and roughly 4% of that money goes to aid people living with Autism Spectrum Disorder (ASD). The money does not go to find new ways to assist those with ASD such as therapy, supplies, etc. They simply want to “eradicate” autism. They want a “cure” and prenatal testing so women can choose to no longer have autistic children. Unlike other autism organizations, no one on their board of directors has autism.

As are all my children, my autistic child is amazing. She can memorize calendars and pictures. She can write numbers up to and beyond 247 in what appears similar to some computer code. She has memorized sight words her class hasn’t even gone over, but won’t let me add them to the stack we practice because her class doesn’t have them yet. She’s an artist with talent beyond her years. Maybe this is because she sees things more vibrantly and sees every miniscule nuance of a detail. She’s a fighter. Sometimes that’s a blessing and sometimes it’s a curse, but it is always a constant.

We don’t want a cure for who God made Sadie. If the doctor were to call me, put a pill in front of me, and say, “This is the miracle pill that cures autism.” I would fervently decline. I would take all of the tears, all of the struggles, and all of the challenges every day and twice on Sunday, rather than anyone try to change the child God gave me with a pill made by man.

After all as Sadie said, “My life is beautiful. God made my life beautiful.” Why would you want cure that? That is a sentiment people spend their entire lives aspiring to feel deep within their souls. So, for World Autism Day we lit it up BEAUTIFUL.

 

Jesus Came to Our House

Mainly illness kept us from doing anything this Easter, the baby is still sick, not to mention the rest of us. I look at Facebook and see family pictures of everyone at church and family functions. Everyone looks beautiful by the way. Families want you to come over, friends invite your family out, but few will know and understand that with Autism the routine of the day is shot first thing in the morning. Chocolate and toys are not the usual routine of the day.

 

The biggest church days are Easter and Christmas. Not coincidentally the worst days to take an ASD child to church. As an ASD parent you want to phone family and churches and ask what days will there be the lowest attendance? Summer beach weeks maybe? Luckily, even on Easter, God is not just found in the church. He always is invited in our home.

 

Actually He lives here and He understands that with the life He gave us there won’t be cute outfits. They are likely to be itchy, or the sandal straps feel weird so socks are required. He understands the packed homes and churches with all the beautiful colors, sounds, smells of freshly showered people and freshly cut flowers is overwhelming to the sensory processing system.

 

So today, and every day, thank You God for coming to the sometimes shut-in ASD family that we are so grateful You created. It’s so comforting to know if we can’t be in Your house, You will always be in ours.