Here…a thought and prayer about our brokenness and need for healing. There…a thought about what color feels right on the future house we want to build. If we do not allow our minds to wander without rigidity while in the spirit of prayer and in the presence of God, how else would we ever be inspired? How would we ever learn to feel what is right if we do not allow ourselves to consider all things in His presence? How can God be condensed, compacted, contained in formal prayer as opposed to meandering, protracted time spent in each other’s presence?
Facebook…If you are reading this, I have already made my decision to say goodbye. I have lost my desire to be in a relationship with you. In fact, somewhere along the way, I think our relationship has taken a turn for the worse and gotten a little bizarre. It started off good…a few friends that were “real” friends in “real” life. You helped me to keep in touch with people, share photos and silly kid stories with friends and loved ones out of state, strengthen bonds within already existing friendships.
But then, things started to get weird. Friends of friends started friending me, people from so long ago they were a distant memory, people I didn’t really know and never talked to! And I didn’t want to be “mean”, so I accepted. And I started noticing how other people lived, at least how they projected or I perceived that they lived…how many times they worked out, went on vacation, what they ate for breakfast, their thoughts on parenting, how their marriage was going…even public Facebook accusations of infidelity (?!) and without knowing it, I started to spread myself a little thinner. I subconsciously started comparing myself, my life, my kids, my house and then for some reason, I didn’t feel quite as good about my life, or at times, perhaps went the other way and became shamefully prideful. But I brushed it off and vowed to compare less.
Then I started thinking about how odd it is that I know who’s loved one had died, or who was going through a painful divorce or issues with their kids…really intimate and hard life stages. Yet, if I ran into them in a store, I would NEVER have brought these issues up. It just wouldn’t be appropriate based on the lack of a shared, “real” relationship. I might even change directions to avoid seeing and greeting them. But yet, I knew such intimate details about their lives. Very strange and so unnatural…
And I realized that these same people that I don’t really know, know so much about my life (and I even consider myself a guarded fb user!)…my kids, their names, our struggles with autism. Again things that might feel forward or intrusive if half of my Facebook “friends” were to ask.
None of these thoughts are new…they have all been stated much more eloquently by critics of social media. I’m not sure what officially brought on this decision. Maybe it’s the fact that I turn 40 this month and have far less tolerance for BS. Maybe it’s because I’m so introverted and am perhaps becoming more so with age. And maybe it’s being sickened by seeing it carried out ad nauseam in my teenagers and sincerely fearing the relational and communicative deficiencies of future generations.
I think all of the above is true. But I think I’m also coming to grips with the fact that I am an “old soul” trapped in a young-ish body. My husband and I have boxes of letters from when we were dating. I prefer a hardback to a kindle, driving to flying, and walking to driving. I cherish being home with my kids and being available to help my husband. I don’t have a bucket list, nowhere I want to visit before I die. I just want to live a long and happy life with my husband and watch our kids and grandkids grow. Perhaps some would say this is settling or a lack of ambition. I think that has been my fear. But I have realized how inverted and backward we have become…how fearful we are of simplicity, of a life “merely” lived well. It seems we are losing the ability to solely cherish things in our heart without having to broadcast. Perhaps we are afraid to just BE, without feeling like we have to be something great. As I jokingly (but also very seriously) say to my kids, “If it’s not on snap chat, did it even happen?!”
I recognize that what I’m saying is not for everyone, that social media can, in fact, be a great way to connect people. There is no judgment or condemnation in my decision. It’s just that for me, I feel the need to part ways for my sake and as an example to my children; that maybe, just maybe this whole social media thing is a little strange. Perhaps it’s time to step back from technological advancements and connections, slow our lives, recalibrate, have real conversations and let go of ones that aren’t. It’s a decision for me that has given a tremendous amount of peace and freedom and space to breathe that I didn’t realize was even missing.
Sometimes I wonder why I didn’t do this sooner, why I’ve drug this departure out for so long. I think the biggest reason is fear. I worry that if I’m not present on social media, people will think I’m weird, snobbish, or that I’m trying to make a trendy statement. But mostly, I worry that if I’m not on social media I might truly just disappear and be forgotten about. Perhaps that is true. My circle is quite small and might get even smaller. But the people that are in my life will be there by choice, not out of guilt or compulsion. I don’t want my life to be measured by the number of “friends,” the number of likes, the number of shares.
To my fb friends…there are a great many of you that I have enjoyed getting to know better and reconnecting with through Facebook…your humor, your insights, your hearts. Please understand that this is not a desire to become a hermit or escape from relationships, but rather a desire to deepen existing friendships in a real and authentic way. I believe you all have my phone number, or at least know how to get it. You can also follow my blog…I don’t write often but if I do have something to say, it will be found here.
Goodbye Facebook…it’s been “real”.
This weekend we went away for Grayson’s 13th birthday. I definitely wasn’t in a celebratory mindset going into the weekend, as we had gone through multiple mind changes and so much deliberating about where to go, who should be included, where we would eat at, what we would eat, what the hotel would be like, etc…etc…etc…
The small farm-to-table restaurant was delicious, but did not have “normal food.” There were multiple breaks where Grayson left the restaurant to calm down, and several episodes of concealed (but silent) tears beneath his tightly drawn hoodie while hiding his head underneath the table. Although he tried bites of everything I asked him to, his dinner basically ended up being the “normal” gluten, dairy, egg-free cake that I made for him and brought from home.
The next morning at breakfast, he walked up to our server to ask for his drink by himself and she patted him on the shoulder as he turned to walk away. It was this small, but monumental event that changed my dutiful weekend into a celebratory one, filled with gratitude, amazement and a quiet but firmly substantial joy.
Any parent that has a kiddo with sensory issues, knows that a touch from a stranger has the potential to turn into a full blown meltdown. But on October 27, 2018, Grayson’s 13th birthday, he didn’t flinch. He didn’t even seem to notice that a stranger had touched his shoulder.
I was reminded of being in a similar hotel in Missouri approximately 11 years ago. Grayson was sick and on prednisone and a complete mess. He was red-faced, screaming, and asking for juice in the hotel restaurant. He then proceeded to hurl the full cup of juice all over the floor once he received it. This was the same weekend that he bit his new baby sister’s toes and made her bleed for no apparent reason at all.
I also remembered the first time I tried to take him swimming with his siblings at the community rec center. After his screaming and crying calmed down, he proceeded to sit on my lap and repetitively buckle and unbuckle this life jacket for the duration of our time there.
But on his 13th birthday, we went to a hotel and a new restaurant, and a monstrous skatepark with huge ramps. He didn’t have a melt down. He asked for help from strangers when he needed it. He navigated his way through the skatepark while we sat and watched and he tried new things and worked through his fears with the skills and coping mechanisms that have been taught to him by angel-teachers through the years.
On the morning of his birthday, he wrote me this note, using the voice-to-text skill that was again given to him by teachers as a gentle accommodation when writing by hand was hard for him…
For any parents struggling through a brutal introduction to life with a special needs kiddo…it can get better. The progress is slow and often imperceptible, but the payoffs are immeasurable. I have learned more from him than he could ever learn from me, and although I have questioned over and over if I am the right mom for him, I know beyond a shadow of a doubt that he is the right child for me.
“Love…bears all things, believes all things, hopes all things, endures all things. Love never fails.” I Cor. 13:7
It is said around the time that Christopher Columbus set sail, that the English pirate Drake was raking Spanish holdings up the west side of the Americas. As Columbus had sailed into the unknown, his fearful crew was allegedly on the brink of mutiny – mutiny, rather than come to the edge of…whatever. Columbus, in this perilous atmosphere, made a stark entry each day in his logbook: “Sailed on.”
More often than not, were I to keep a logbook, I think that my entries might be quite the same, as are my days. Wake up…work, kids, clean, errands, food…sleep. Repeat. “Sailed on.” When I am honest, there are often times that I find myself questioning, “Is this all there is to life?” I’m convinced that monotony must be the cause of many mid-life crises. We get stuck in the rhythm of our days, realize that life could realistically be half over, and feel a desperate need to break free from our own restraints, explore beyond the boundaries of our own boredom.
However, we all too often live our lives looking off into the horizon for the next great thing…marriage, a baby, a promotion, vacation, retirement…we are looking to “arrive” and missing the journey. The thing is, we don’t know what lies on the horizon. We don’t know if tomorrow will even arrive, and if it does, we don’t know if it will carry promise or catastrophe. We might quickly find ourselves longing for the boredom and monotony of yesterday. Obviously, the key is to live with gratitude, finding value and joy in the day-to-day. But I would also propose, as I struggle to live this reality myself, that we should not only strive to find joyful moments in the tedium, but also learn to lean in, settle in, relax and embrace the restlessness of simply sailing.
Just as it is often impossible for a ship to perceive forward movement on a vast sea without any landmarks, we too are often unable to sense any inner growth or progress in life. But if we can accept and trust the process, the journey, the Captain, we will at some point be able to look back and see that it was all for our good…the sun, the storms, and the endless stream of days upon days. So for now, I prepare myself for whatever the day will hold. I’m sure the range will be vast. And tonight, I’ll settle in and close out the day with another mental entry, “Sailed on.”
because i get constantly get phone calls from school telling me he tried to stab a teacher with a pencil or that he tried to cut himself with a pencil sharpener blade or that he’s mad and can i calm him down. because he asks me so many questions and has so many issues and arguments that by 7:00 p.m. i can’t even remember what i did earlier on in the day. because he goes to school every day and his best friend is his teacher. because his remorse and sadness is sometimes too much for my weary heart. because every day i’m pretty sure God could have chosen someone better. because i spend all day frustrated and all night feeling guilty. because i’m at a loss for how to help my child. because in this captured moment, my heart melts, and i can set aside my fears and frustrations and simply see a human being…loving his cousin…needing desparately to be loved. and i’m pretty sure God gave him to me more for my sake than vice versa.
The end of summer feels a bit like wandering through the aftermath of a natural disaster. I mentally move from room to room, assessing all the damage that has been done after several months at home with five kids, mainly my autistic son. A broken window in the basement…door jamb plates that have been sneakily unscrewed at some point to avoid “room time…” a broken lamp and glass candlestick in the storage that I’ve known about, but somehow, just can’t conjure up the energy to clean…broken glass tabletops from angry, slamming spoons as well as from the time he was “pretending” to throw a chair and slipped…broken doors and doorknobs (oh Lord, so many broken doors)…a garage door that won’t shut, a front door that won’t open…railings that have been ripped out of place…the list goes on and on…
And then there’s the internal inventory…everything I set out to do this summer, everything I hoped to be and do and just ran out of steam. Everywhere I look seems to be a reminder of my failures and shortcomings. And it feels a bit overwhelming…a lot overwhelming, actually. I basically want to pack it all up (or just leave it all behind) and move to Montana (or anywhere).
And tomorrow, he starts middle school. My stomach hasn’t stopped churning since I realized how close the start of school was (a combination of sheer dread and simultaneous elation)! I remember leaving him at preschool…I guess it was more like peeling him off of me and sprinting out the door…and this kind of feels like that. I am always afraid of him feeling afraid, of him feeling lonely, of someone being unkind, of me not being there for him.
But in the daily midst of struggling to just breathe and not suffocate, a bright thought sneaks into my darkness. My 16 year old son, who was standing on a teetering precipice, spent the summer fishing instead of partying, all day every day. He came home happy at night and actually talked to us and laughed with us! My daughter spent 5 weeks in Florida helping family take care of a household with 4 small children. Last night, I sat up until midnight with my 13 year old son and 3 of his precious, giggling, hilarious friends as they tried to learn how to use chopsticks (and or course broke more glass in the process)! My youngest daughter is still asleep with a friend in a fort they worked until midnight…and not a single electronic device was involved!!
I woke up this morning reminded (yet again) of the messiness and complexity of life. I constantly feel like my life is either on the brink of a tragic catastrophe or sheer paradise. They are both true, I think. Every breath holds within it the potential for suffering and misfortune, as well as peace and prosperity. But sometimes it is not so obvious which is which. Most days, I am incapable of discerning what events will lead to my downfall or my salvation. It all blends together in one chaotic, jumbled mess. Perhaps it is all one in the same. At times, I can’t see through my tears. But on any given day, they might be tears of heartache or tears of laughter. Life seems to be one huge contradiction. It is concurrently chaotic and monotonous, sorrowful and joyful, dreadful and wonderful.
It’s pretty hard to hide and yet at the same time, hard to admit…I’m a mess, my kids are a mess, my home is a mess. But I guess it’s the mess that makes us human, that makes us vulnerable and that humbles and refines us. I can’t say that I always appreciate it, that I don’t at times try to close my eyes and make it all disappear. But on better days, I can at least accept this beautiful mess called life…
As a designer, I tend to be very particular about the things that I see as beautiful. In my own home, I confess I love things to look contemporary and fresh and just-so. I love rotating new items into my existing decor. I quickly get rid of things that look dated or worn. However, I have recently had the pleasure of reading two wonderful, albeit very different books, that have greatly challenged and broadened my view of aesthetics.
The first book, called “The Wabi-Sabi House,” addresses what the author (Robyn Griggs Lawrence) refers to as “the Japanese art of imperfect beauty.” She states, “The subtle messages that live within wabi-sabi are the things we all seem to long for today: Slow down. Take the time to find beauty in what seems ordinary – and to turn the “ordinary” into something beautiful. Make things yourself instead of buying those spit out by a machine, and smile when your work is flawed. Wash your dishes by hand, and most important: learn to think of others before yourself.” Wabi-sabi finds beauty in things that are old, natural, broken, simple and earthy. I must say, it is a challenge for me to find beauty in old things. I love new trends and styles and experimenting in my home. I am not sentimental or much of a collector. I have five children and often value efficiency over, well…basically everything! However, I am stretching myself by attempting to slow down and find beauty in unexpected places, while incorporating small touches of imperfect and meaningful beauty at the same time.
The second book by Nate Berkus, “The Things That Matter,” thoughtfully covers the idea of filling your home with items that carry personal history and significance. He opens the first page by sharing, “I’ve always believed your home should tell your story…Those cuff links? They belonged to somebody I loved: we picked them out on one of the most perfect days we ever spent together. That tortoise shell on the wall? There was one exactly like it in my mother’s house and I can’t see it without thinking about a thousand inedible family dinners. Each object tells a story and each story connects us to one another and to the world. The truth is, things matter. They have to. They’re what we live with and touch each and every day. They represent what we’ve seen, who we’ve loved, and where we hope to go next. They remind us of the good times and the rough patches, and everything in between that’s made us who we are.” I love this! And while this may come quite naturally to some people, this concept has given me quite a bit to think on. My family has never valued THINGS very much, which is both positive and negative. While we are not tied to our possessions, we also don’t have any family heirlooms that exchange hands or generations. I have purchased every single thing in my home…no gramma’s rocking chair, mother’s cookbooks, dad’s tools, nothing! This honestly makes me a bit sad, but also determined to do things differently for my children. I have started purchasing (or keeping) something special for our home every time we travel: horse hair pottery from South Dakota, my husband’s first emptied out clam shell from Maine, a wooden manatee to remind us of the one that chose to swim with us in Florida. When my gramma passed away, I carefully elected to save a jade letter opener that reminded me of her (I never knew anyone who actually used a letter opener to open letters)!
While I still openly profess my love for all things new, I am also committed to expanding upon what I have traditionally viewed as beautiful, and to looking through an object into its past. I am looking forward to owning THINGS that matter, things that will one day cause my children to re-tell my stories to their children. And I eagerly anticipate the lessons that I know will come…as I learn to find perfection in imperfections.
I packed a lunch for my oldest son today. I literally can’t even remember the last lunch I packed for him. But today was his first day of work…a real job…manual labor. Packing that lunch and sending him off on his own made me realize that even though on one hand, I’m counting down the number of days until I can send him on his way, I’m still holding onto him tightly with the other. Even though he daily makes me want to scream, I don’t relish the thought of anyone in the “real world” doing the same. I’m not a hoverer or a very tender mom. I even feel a little calloused at time compared to other moms I know. But today was hard. It was hard to bite my tongue and not give advice. It was hard to not worry. It was hard turning him over to someone else who I know will (thankfully) make his life very physically challenging. Ultimately it was hard to let him go and recognize that this is how men like his father are made…through hard work and hard knocks, through trial and error, falling down and getting up. And none of that involves me holding his hand any more. Just like that, my time with him has shifted and it is time for me to step back and lead from behind instead of in front, to teach through listening and silence instead of repetition of words. Dropping him off, I felt the urge to reach out and grab his hand for old times’ sake, but refrained as common sense warned against it. So I just watched him walk away without looking back, swallowed a little lump in my throat and drove away, alone with my thoughts and empty handed. Who knew what a little sack lunch could do…
I’ve spent the last few months with blinders on…not the blindfold type of blinders that prevent you from seeing, but more like the type they put on horses to keep them focused on what is ahead of them. Life all of a sudden got really hard, and really good, and really busy, all at the same time. Kind of like a whirlwind introduction to teenagers, owning your own business, husband starting a business kind of boot camp. I laugh/cringe because this is just the way I operate…when things get hard, I get small and go inward. When I was delivering my first son, I basically kicked everyone out (and down the hall so I couldn’t even hear their voices), and my poor husband who took all those crazy classes with me didn’t even have a chance to put his newfound knowledge to work from his chair in the corner. I had to be fully alone and present with myself to focus and complete the task at hand. So I’ve spent the last few months in my “internal cocoon…” possibly socially isolated and emotionally withdrawn, although I don’t know how I appear to others. I haven’t been upset, I’ve just had to focus on getting through a challenging time and I do my best work alone.
I planned and pushed with fervency to wrap up as many jobs as possible so that I could be home with my kids for the summer. And then…it was summer. But to my complete surprise (and delight), the summer that normally devours me like a consuming tornado, has meandered in peacefully and silently, observed by the wonderful cessation of marking time and checking off to-do lists. I did reverse psychology on myself by getting so busy, that summer now seems slow in comparison (I must be smarter than I thought to be able to trick myself)! My oldest boys literally fish from sun-up to sun-down and my daughter is in Florida helping family. I have gone from having 5 seemingly co-dependent children to feeling like I only have 2! My days have transitioned from non-stop movement, to coffee (with refills!) on the patio in the company of a good book.
Throughout the course of the last few months, I am reminded that the struggles and busy-ness of life can function as a splinter. They can cause irritation and sometimes outright pain, but the second they are removed, the relief gives way to a newfound joy and appreciation. Although I am a regrettably slow learner, I am beginning to posses with certainty the belief that every stage of life is good (even the hard ones) and can offer new opportunities for gratitude. I have loved being busy and creative and working, but I also love letting my brain rest and “just” being a mom. We can go through life, constantly looking anxiously ahead to the next phase, or we can learn to suck the marrow out of the here and now. I have done plenty of looking ahead. I long to improve upon cherishing the present.
I am also (finally) beginning the grasp the importance of living seasonally. Earlier in life, I strived and worked incessantly. I felt lazy if I stopped to rest. Yet when we frantically press on and on (even in positive, fun times) without diversity or change in pace, we quickly run out of steam and live a dreary life of monotony. There must be times of ebb and flow, work and rest, tears and laughter, suffering and joy. I am learning to heed and embrace the literal seasons of nature for life cues…the long, slow spread of summer days, the solitude and silence of winter, the invigoration of spring and the calming crispness of fall. I’m even attempting to eat seasonal foods to provide for varying physical needs throughout the year. I’m trying to fight less against life, and instead receive with open hands of gratitude each twist of events that life presents. In doing so, I am learning to trust more deeply and authentically. Hindsight is always 20/20 and the longer I live, the more I can look back over the threads of time to see how my life is being expertly woven. I am seeing with greater clarity that I can breathe and lean fully into a life of trusting God, nature, and myself.
Living seasonally is nothing new. It is, in fact, ancient and old and wise. I, however am not. But perhaps through the symbiotic relationship of internal intuition and nature’s external prompting, I can settle in to a rhythmic sort of journey that will lead to a full, healthy and long existence. Life is hard. But it’s also really, really beautiful. I want to make the CHOICE to savor the sweetness of life, instead of dwelling on it’s bitter moments. Cheers to summer…
I have wanted to publish a book for a long time… not a book with words or even illustrations. Just a book of photographs. I would call it, “The Many Faces of Autism.” In this book, I would chronicle what autism in our house looks like on a day to day basis – the good, the bad and the ugly.
Most likely, I will never get around to a book of any sort. But as it is Autism Awareness month, I’ve felt the need to do something to honor Autism, honor Grayson, and honor our journey that we’ve been on together. I have put together a mini sampling of photographs (click on photos for descriptions). Maybe this is something that only a mother can appreciate. I really don’t know.
What I do know, is that sorting through these pictures has resurfaced so many emotions – sheer joy and pride, and grieving all over again at the hard reminders. I remember the early fits and craziness, countless doctor appointments, and the constant helplessness that never left my side. I remember peeking through the preschool window to see him pulling his hair and rocking, all of his frantic fears…plastic bags and umbrellas in the wind, the fear that someone would eat his food, touch his bellybutton, etc…etc…etc… I remember crying the day that he ate his last Krispy Creme doughnut, knowing that a super restrictive diet was to start the next day, as we tried to heal his bleeding ulcers and bacterial gut infection. This “diet” would kept me up until 3 a.m. trying to figure out what in the world to feed him and learning 1,000,000 new terms for allergens. I remember never being more than 5 minutes from his school and the way my heart would race every time my phone rang. I remember the screaming, sometimes hours on end, and feeling like death would be a welcome relief.
However, in spite of all of the heartache, what I mainly see when I take a bird’s eye view of these photographs is…GROWTH! In the midst of the day to day fits and agitations and 50 TRILLION QUESTIONS, I can easily forget just how far he has come from the little boy that he once was. These pictures serve as a sharp probe to remind me to count my blessings. Sadly, I have gotten lost in my own agitation and impatience. I have started seeing failures instead of successes, and I have forgotten how to laugh with Grayson and find compassion for him in his struggles. I have forgotten that he is funny and sweet and smart and creative! And in all of this forgetting, I have forgotten that although I may be tired, I am not a mean and angry, old and haggard witch (how I feel at the end of so many days). I have forgotten that it’s ok to laugh and smile. I have forgotten so, so much. I have a lot of remembering to do, and quite honestly, this overwhelms me. What if I cannot remember how to get back from where I came? Perhaps I have never even been “there” and need to forge a new path?? But then I think of Grayson and all that he has overcome and become, what we have become together. And I know that I can, and that I will, get where I need to go.
Maybe this is the beauty of photographs. They capture moments that trigger memories. And though not immediately apparent, when viewed from afar, we are able to see that which was missed standing close up. So, without further ado, I am happy to share, “The Many Faces of Autism…”