Sunday, September 20, 2015

Different, not less.


For months, I've been trying to figure out the best way to share this, or whether it was even appropriate to share at all.  This is part of why I've been quiet the past few months, and why the posting has been infrequent.  But especially over the past week, I've felt a strong pull to let you into our life.   I feel inauthentic by not talking about this, and I feel as though I'm faking it by pretending that everything is status quo.

For almost the past year, I've alluded to family issues, developmental delays, emotional times, and busy busy weeks.  All of those are simply euphemisms and roundabout ways to get to the point without saying the words.  The truth is -- our sweet Henry was diagnosed with autism this summer.

It wasn't a surprise; we expected this news.  He's nonverbal with a whole host of sensory, behavioral, and social issues.  Yet I still experienced pretty much every emotion under the sun when I heard those words.  I cried both tears of relief and tears of sadness.  Relief because it meant that we now had a diagnosis for what we've known all along, and we could begin to move forward with a real plan in place.  Sadness because, of course I was sad!  Since his diagnosis, I've continued to experience all sorts of conflicting emotions.  But one thing has grown stronger, and that's my love for Henry.  Yes, being diagnosed with autism is indeed life-changing news.  But it did not change our life.  We go on like we always have -- laughing and loving.

Henry has the sweetest soul you've ever known.  If you want to witness pure innocence, just look into his big brown eyes.  When he engages with you, it will melt your heart; whether its a fist bump, a high five, or the rare kiss. Henry is my hero.  Life is not easy for him, and he has a long road ahead of him.  But he wakes up smiling every morning, and he loves life in a way that I've never seen before.  His spirit is strong, and I know he's going to be okay.

Love needs no words, and I feel and see true, unadulterated love every time I look at Henry and anytime he looks at me.  Caroline already knew that Henry was different,  and that his brain works differently from ours; she knew that Henry doesn't use words, and he doesn't always "know how to make good choices."  When we explained Henry's autism to Caroline, we did so with the help of the book My Brother Charlie.  There is a page that I've since bookmarked.  As Caroline read this passage aloud, she replaced "Charlie" with "Henry," and said that this is how she feels about him.  It's how we all feel.

I've learned from Henry that love doesn't always come from what you say.  It can also come from what you do.  And so we do right by Henry.  We love him strong.  And we watch over him with the might of angels.  We have to.


Part of my initial sadness was due to the fact that he's a twin.  He's forever being compared to Tucker, and I felt like it wasn't fair to Henry to live in that comparison for his whole life.  Until I realized something: he has an advocate and protector in Tucker.  They might not be on the same path, but Henry has Tucker (and Caroline and Smith) as built in advocates for life.  I truly feel that they are a gift for us and Henry in that way.  Caroline has already assumed that role; she is fiercely protective of him, and she has made it her mission to educate her friends on autism.

I don't intend to sugar coat this.  It's not a fun road we're on.  We have some really bad moments.  He struggles every. single. day.  We garner a lot of stares and disapproving looks, and have already encountered many people who simply think we need to do a better job of disciplining him.  Some days I feel good about the hand we've been dealt, and I feel good about our plan.  But some days I count down the hours until I can crawl into bed and cry myself to sleep.  At the unfairness of it all; for us, and for the millions of other families who are going though the same thing, in this club that none of us asked to join.

We don't know what the future holds for Henry.  We are hopeful that with the intensive early interventions we are doing, he will be able to use words to communicate and grow to be independent and highly functional.  In a few weeks, he'll be starting at an autism therapy-focused preschool, so we are very excited to see the progress he will make there.  For now, we live and we love Henry, and we've adopted this song by Phillip Phillips as our anthem to him.  These are the word I wish he could understand. Because if nothing else, I want him to always know how very loved he is.

Hold on to me as you go
As we roll down these unfamiliar roads
And though this wave is stringing us along
Just know you're not alone
I'm gonna make this place your home.

Settle down, it'll all be clear
Don't pay no mind to the demons they fill you with fear
The trouble - it might drag you down
If you get lost you can always be found
Just know you're not alone
I'm gonna make this place your home.


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