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.

 

 

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

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.

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.

 

Gumdrops & Milk duds

What does parent child communication look  21st century?

 Gumdrops and milk duds of course.

Handled Like a Boss

Pediatrician Free Chicken Please

Antibiotic free chicken. Why would I want that? I take 1-4 children to the pediatrician weekly. Chicken seems like a cheaper way to get them antibiotics.

Standing in the Gap

While sitting in the recliner, holding Trouble, and breathing in the intoxicating smell of his hair I heard Milk Man say, “You should write about what a great mom you are.”

I looked at him incredulously and spontaneously interrogated him, “Why in the world would I do that? Who does that?”

Even in disbelief I saw a wealth of emotion in his eyes. Love, respect, and adoration were the few I could identify in what was obviously a sea of feelings. I quickly dismissed the idea as self-absorbed and narcissistic therefore nowhere in the realm of my writing genre, not to mention my character.

During occupational therapy with our autistic child I was trying to soak up as much knowledge as possible to help her at home while trying to feed baby at the same time. I managed to miss his mouth at least every other spoonful due to either his inattention or mine. The occupational therapist looked at me and asked quizzically, “Does she like to play in the mud?”

“She loves it. I don’t let her much though. When you have 4 that ends up being a mudslide, in the house. Why? Would that help her?” I asked, eager to try anything to ease her sensory processing disorder especially when the substance is free and we possess an abundance of it.

Nonchalantly she answered, “No. I just have two kids and they bring in a lot of dirt. I couldn’t imagine what it would be like with four. I couldn’t do it.” As she stared off into the distance I could see her picturing the mess currently residing in her home then multiplying that. I didn’t need to think of mine. It’s seared into my brain, always.

I often get those statements from just about everyone I meet…everywhere…all the time. I don’t know how you do it. I couldn’t do it. Bless you. You sure have your hands full.  I can’t believe you take 4 kids to the store. I can’t imagine why you take 4 kids to the store!

As with all my writing these events led to the inspiration to write. Maybe people aren’t just flabbergasted, maybe they actually wonder. The answer can be found in a conversation I had with my 10 year old daughter on a drive to the store one day. She asked me how she would know what God’s purpose was for her life.

Reflecting back on my own 36 year search for purpose I advised her, “You should ask him. Usually it’s nothing you had planned.”

“What do you mean?”

“Well, I went to school to be a social worker and I did that for a while. Daddy and I decided to have a baby and God gave us you. Later we decided to have another baby and God gave us two. Daddy and I decided we were done. Then God said, ‘Except for this one.’ We were both scared. Each time we had a child we had new fears and new concerns. We also had new blessings, new hopes, and another purpose. I have learned so many things about myself. I am a writer, a photographer, an artist, and a loner. I’m funny, brilliant, beautiful, and strong. I am anxious, moody, obsessive, and a perfectionist. There are so many things I want to see and do in my lifetime, but there’s only one thing that I know if I didn’t do it before I die my life would’ve been wasted. That’s being a mom. It’s a small part of all the things that I am, but it is my greatest purpose. I didn’t always accept it willingly, trusting God fully, still don’t, but I know that this is my purpose.”

That explains why I do what I do. As for the most common question,  “How I do it?”

My dad once told me, “Your job as a parent in this world today is so much more difficult than mine ever was. Keeping them safe from the internet, bad influences, and drugs. We didn’t have to worry as much.” The secret to purposefully parenting any number of kids is not found on Pinterest, in name brand clothes and technology, nor in aggressive, competitive education and sports. It’s not in how big, clean, or expensive your home is. It’s not about awards to put on Facebook, though we have those. It’s not about who had the most exciting expensive vacation. It’s not about whether a 7 year old has an iPhone.  It’s not about participation trophies or first place trophies.  It’s really quite simple.It’s about the message through the gap.

When it comes to friends, feelings, drugs, sex, media, music, internet, sports, school, challenges, needs, and wants I stand in the gap between our kids and the world. Kids are amazing. They will find their path. Yes, they need some reminders not to kill themselves or each other, positive reinforcements, and consequences. More than once our kids have come home to nothing in their rooms but a bed. They know you mean business when they only have a bed and have to earn back everything from toys to posters. We don’t hide the world from our kids. You better be the first one to talk to your kids about sex, drugs, alcohol, and the internet because if you aren’t you can be assured they probably won’t get the message you want them to. I give my kids as much room to be themselves the way God made them, to grow the way God intended, to learn the way God has planned. Even when it hurts. I give them that room then I stand in the gap between what the world throws at them and the purpose God gave me to make sure in the gap between the world and my child the world’s message is filtered through God’s love. Just stand in the gap, that’s how I do it.

(Featured picture courtesy of our 10 year old photographer. I love seeing her world through her eyes. She has real photography talent.)