How We Got Here: The Beginning

When Marshall was 8 months old, I knew he was autistic.  Call it mother’s intuition, call it overreacting, call it what you will: I knew.  His milestones had been a stitch delayed up to that point (rolling over was late, sitting up was late, hand eye coordination was poor) but at 8 months he began rocking and flapping his arms.  Now, to most people, these are just normal baby things, and for some babies they are—but I knew there was something bigger going on.

At his 6 month well check, actually, the nurse practitioner raised concerns that he wasn’t sitting unassisted and that he didn’t reach for the popsicle stick she dangled in front of him. (I know that’s not the medical term, but let’s call a spade a spade.  No one goes to craft store and buys a bag of tongue depressors for their projects).   My fear of the truth and desire to bury it (out of sight, out of mind, right?) led me to switch pediatricians at once.  By the grace of God, this was a great decision anyway—we love our pediatrician and I needed his laid back style in that season. 

I’ll never forget when 8 months rolled around and my fears became more concrete.  When the rocking and flapping continued to increase, it dawned on me that there were other red flags, too.  Even at such a young age, Marshall hated unstructured social gatherings or unexpected change.  He did great at church every week (predictable, music-filled) but didn’t care for parties or gatherings at people’s houses.   To be honest, I didn’t realize how tense and burdensome this was until we had Joey, and I realized how easy a typical kid was in those environments. 

Dealing with the reality of who Marshall was, trying to rise above my fear, and being a first time mom was exhausting.  He rocked so much in his high chair that it was difficult to feed him.  We tried everything, and at 8 months moved him to a booster seat instead.  Diaper changes were a nightmare, so much so that we resorted to changing him while he stood.  (Turns out kids with sensory issues sometimes HATE being laid down on their back.)  He rocked himself to sleep each night in his crib, and would rock whenever his back was touching anything.   He spoke less than other kids, engaged less with toys, and was content to sit in one spot without any effort to get up and go.  

The thing is, I can tell you all of these things with calm confidence now.  But in the moment, I was afraid to say them aloud for fear that it would make it true.  I was embarrassed that I didn’t know how to handle him, or help him develop faster.  Isn’t that silly?  Being removed from the situation for nearly five years has given me a lot of distance and clarity, but in those moments the fear was overwhelming.  The reality was devastating.  And the unknown was paralyzing.

I may have admitted my fears to Wes, but for a long time I kept them wrapped up in the deepest corners of my brain, pinning them in and shutting them down however I could.  After all, I was a first time mom—was it something I did?  Something I was doing?  Something I was failing to do?  When you’re a first time parent, you think your reality is the one everyone else experiences, too.  It’s easy to feel like parenting is hard because you’re doing it wrong, not because of any factors outside of your control.

I hated every well-check, and struggled to enjoy play dates or being around other kids of similar ages.  Life was challenging in ways I didn’t want to admit, and the comparison to other kids was constant, no matter how I tried to quiet it. 

At some point along the way, between 8 months and a year, I admitted my fears to a hand full of people I knew I could trust.  Two of them quietly agreed that I could be right.  Several others immediately told me he was fine-- not to worry!  There’s no way he was on the spectrum, he liked people!  There’s no way he was autistic—he smiled and made eye contact!  To be honest, both responses, the understanding and support and the disbelief and insistence that he was fine were very helpful, and comforting.  Those who dared to travel the road of what if’s with me gave me peace that I wasn’t alone, and that I wasn’t crazy for thinking these things.  And those who insisted that he was fine lightened my load because they saw him as Marshall first, saw his strengths and his beauty and his wonderful nature first, and barely noticed his shortcomings and struggles.  They gave me hope that regardless of what struggles we endured or what label he would inherit, he would be all right.  We would be all right. 

Reliving those moments and reflecting on that season is strangely comforting now.  It was really hard, and I’m not sure that there’s anything that would have made it any easier.  The truth can be hard and brutal; it can take your breath away and bite your skin like a gust of wintry air.  Breathing in the reality of who Marshall is, one breath at a time, at our own pace, has been an experience unlike any other.  Looking back at where we were in those early months and years and where we are today is pretty remarkable.  Marshall is one of the most fascinating people I’ve ever met, and he continues to surprise us everyday.  

The Lord knew who he was when He created him, and He knew who we were too.  This journey has awarded us patience in seasons of waiting, joy in small victories, growth in our relationship with one another and with the Lord, and leadership in parenting.  This experience has made me a different teacher, a better friend, and has forced me to live in the moment, making each decision as it comes.  I won’t tell you I would have chosen this path or that I would choose it for anyone else, but I can tell you that it’s a path worth walking with my head held high.  Being Marshall’s mom has become part of my God-given identity, and I wear it proudly.   

What part of this resonates with you today?  Are you worried about your child in a way that others aren’t?  Are you facing a reality you wish wasn’t true?  Are you concerned about a friend’s child, and you’re uncertain how to proceed?  Know this: any act of kindness, however small, is never left unused.  Don’t have the right words? Ask your friend how she’s doing.  Compliment something you love about her child. Open the door to a deeper discussion, and leave it propped open if she doesn’t walk through it right away.  Distancing ourselves is not the answer, whether we are the ones living in fear or those watching from the outside. No matter how hard it was to bring Marshall around my friends and their babies, we just kept doing it.  We picked up our feet and kept going, even when it felt like normal life events were hikes up a muddy hill.  Community has made our journey lighter.  It has helped us to keep our heads up in the face of scary realities, and it has exposed the truth about unwarranted fears. 

Whether you’re raising a child with special needs or not, parenting is hard and can feel isolating at times.  Fight it.  Refuse to give in to the illusion of safety by hiding at home or from others.  Call a friend.  Break the silence.  Link arms with the ones around you and speak your fears aloud—it won’t make them any truer, trust me.  Speaking our fears and bringing them into the light of community can be a game changer— and it might just be what you need to lighten your load. 

Write? I'd rather not, thanks.

I’ve always been a writer, in some form or another.

In elementary school, I published several books in our school’s publishing shop—wallpapered cardboard covers with foam stickers, glitter and a duct tape spine.  I was the real deal. 

In college I had a blog before blogs were a thing. I was hip and cheeky and existential, ahead of my time.  I threw my thoughts out in the world without much of a filter. I knew everything.  I was invincible. 

And then there was a long pause.

I grew up a little, got married, traded my Chuck Taylors for TOMS and started teaching.  Teaching doesn’t leave much room for writing: your brain becomes consumed with reflections, plans, and endless lists of tasks.  I’m pretty certain that as soon as I signed my teaching contract and walked into my first classroom my mind tuned into an unrelenting frequency of unpunctuated thought, right up until this past May when I walked out of that life and into a one year sabbatical.

The writer in me was dormant in that season.  Sure, I wrote some killer ten page papers in grad school and I’ve been known to draft excellent parent letters about field trips and behavior incentives, but outside of an occasional insight that would dance around in my head, there wasn’t room for writing.  And that was okay.

It wasn’t just teaching that consumed me over the last decade.  Along the way, I had two kids and my brain squeezed the unrelenting unpunctuated thoughts about teaching into one compartment and made space for new unrelenting, unpunctuated thoughts on another topic: raising two boys.  Two beautiful blonde boys: one with special needs, one without.  I love them both equally, just as all moms love their children equally.  But if we’re being completely honest, my brain actually had two giant compartments of unrelenting, unpunctuated thought: one for teaching, and one for being Marshall’s mom. The third, teeny tiny compartment housed the rest of my thoughts, which ran at a slower, less urgent pace: being a wife, being Joey’s mom, when to get the laundry done, etc.

I was surviving.  I don’t mean that I was desperate or unhappy, just that life was chaotic and fast paced.  My lifeline was my quiet time each morning, a beautiful little window I carved into my day and protected with great force and intent.  My first steps out of slumber and into coherent reality led me to my favorite chair, under my favorite blanket with my favorite earthly invention: coffee with almond milk creamer.  I began writing my prayers in a journal each day, reading the Bible, and quieting my unrelenting mind for just a few minutes each day.  I cannot begin to describe the life that has come out of that small window of time.  As I continued to stiff arm the world for a few minutes each day and sit at the feet of the Creator of the universe, He began to lead me down unexpected paths of peace, including this sabbatical.

Lately, He’s been pretty persistent about something I’d rather ignore: writing. For months, I’ve been ignoring that call, squishing it down beneath grocery lists and household tasks, swatting it away like a gnat on a summer day.  I could write a ten page paper with an excellent thesis statement about why my writing is unnecessary, or why someone else can do it, or why it isn’t logical for me to pursue in this season of life.  I could continue to ignore the Lord, walk away, swat the gnat, busy myself with life. 

But I can tell you from experience that it won’t work.  I cannot continue to seek the Lord each morning and ignore the things He has asked me to do.

So, I’m here.  I didn’t run here, or walk here, or even travel directly.  I am here begrudgingly, putting myself out there because I’ve learned that there’s nothing I would rather do than go where the Lord is leading me.

I have a story to tell, a narrative that isn’t finished yet.  My biggest hesitation (and the easiest one to hide behind) is this: my story is largely intertwined with my son’s. The boundaries between my story and Marshall’s are blurry, and the safest bet would be not to share at all.

But.

I do not serve a God of safe bets or sure things.  He has a plan for my life, and He has made it very clear that it involves writing.

So.

I will be obedient.  I will write.  I will share the story He’s given me to tell, and trust that He will use it.