what i’ve learned


My friends,

I want to write something profound to mark the changing of the year. Something reflective, perhaps, of the year that we leave behind, or hopeful, maybe, extolling the promise of the year to come.

Honestly, I just don’t have it in me. And of all the lessons that I’ve learned this year, this, right here, is one of my favorites: It’s okay to say, “I just don’t have it in me today.” Nifty that.

But here’s what I can do. I can offer up some of the things that I have learned or relearned (or learned and then relearned and learned yet again) this year. The list is far, far from complete. But it’s what I have. And I’ve learned this year that what I have is enough.


That sometimes the very best thing — the only thing — you can say to another human being is, “I’m here.”

That no matter how hard you want to fix something or help someone, sometimes, for the sake of your own self-preservation, you have to walk away.

That self-preservation is as worthy a goal as any other.

That cancer sucks.

That watching the people you love suffer is the worst kind of hell.

That the answer is not to lower our expectations of our friends, but instead to reconsider whom we call our friends.

That I have a small number of truly extraordinary friends. And that is a blessing beyond measure.

That at the heart of everything that makes a good person good is respect.

That I am strong.

That I break.

That the greatest strength comes from letting ourselves break.

That courage does not come from strength but from faith.

That disability and identity are not mutually exclusive.

That our language is woefully inadequate to describe either of them, no less their co-existence.

That I am not Atlas.

That I don’t need to pretend to be for the sake of those who insist that I am.

That the most gets done when each of us does what we do best.

That contention sucks and harmony is wonderful, but singing Kumbaya cannot come at the cost of everything that we believe is right.

That there are always going to be people out there who think I’m full of crap.

That I can live with that.

That my work does not define me.

That living what I believe does.

That every human being has a right to be treated with dignity and respect.

That, as vexing as I may find it to be, the preceding sentence is still not obvious to many.

That the people who look like they have it all together are simply really good at looking like they have it all together.

That self-advocacy is not just for our children.

That self-righteousness is most often thinly veiled insecurity.

That those who would silence other’s voices fear examination of their own beliefs.

And that’s really sad.

That, sometimes, letting a child fail is the greatest gift a parent can give.

That even in the darkness, there’s light.

That the fundamental truth of salvation is finding and focusing on the light.

That the greatest yardstick of success is happiness.

That you can change the date on your phone in order to get 5 more lives on candy crush. Then 5 more again.

And again and again and again.

That if you don’t change it back, your phone gets confused.

That there’s always more to learn.

Thank you, from the bottom of my heart, for stumbling along with me through 2013. It’s been a heck of a ride.

Wishing you and yours a happy, healthy, and fulfilling 2014.

With love,


17 thoughts on “what i’ve learned

  1. Brooke has just been a joy to read about in 2013…so much expressiveness and growth and awesomeness, along with the challenges (and even those provided new insights and perspectives)…just very excited to see what happens here in 2014. Here’s to a great year and a lovely, world-changing family.

  2. Beautifully felt and written, Jess. And I plan to quote you in a chapter I am writing on boundaries, “That no matter how hard you want to fix something or help someone, sometimes, for the sake of your own self-preservation, you have to walk away.

    That self-preservation is as worthy a goal as any other.” SMART! Thank you generous Jess. May 2014 exceed your optimistic expectations, sincerely lo

  3. Happy new year, Jess. 2014 is going to be a great one for your family, I just feel it. It’ll be kicked off with a memorable solo singing performance (B will be nothing but memorable, come whatever may) and filled with gains and growth and learning and challenges overcome. Hugs and best wishes to you and your clan.

  4. And what I’ve learned from Brooke is that there is nothing more beautiful than being your true self; that there is music and beauty everywhere, and that our expectations and timelines are largely BS. What I’ve learned from luau and Katie is that there is freedom in loving and accepting everyone. What I’ve learned from you is it’s okay to ask for help; it’s okay to feel down; it’s okay to embrace your children just as they are; it’s okay to stand up to people you love and respect if what they’re doing is wrong; it’s okay to let your little fashionista wear her jackets backward, and it’s okay to change your plans to just be still with those you love. And most importantly for me, as I wade through the autism noise, is you’ve shown me that the “autism wars” and autistics vs. parents crap doesn’t have to exist. You’ve introduced me to so many autistic voices, and I’ve learned so much about my children through them. Thanks once again, Jess. You have my full support in 2014.

  5. So much good wisdom there.. but I tell you, there was a huge small that came over my face reading the Candy Crush trick!! I am sooo going to try that because burning through lives on my phone then my iPad is not fast enough. Thanks!

  6. Thank you for sharing this post, it was just what I needed to read today.
    I think the point that helped me the most was these words… “That those who would silence other’s voices fear examination of their own beliefs.” I will ponder on this thought more, I feel that 2013 was not a good year for my voice to be heard and I’m still trying to process just where the change happened. It took me a long time and a lot of prayer to actually start sharing, for me to take off the mask and show the real me after years of trying to fit. Yes, lots more to ponder on.
    Love and hugs. xx

  7. What do you mean, not profound. What you wrote couldn’t be more profound. I never get over being amazed by the incredible way your wonderful keen mind works and how you see so much in all things big and small.
    You teach your old dad so very much each time you express yourself. You have the biggest heart I have ever experienced, only matched by the depth of your incredible mind.
    Wow, what a daughter you are. Thanks for being you..

  8. All the best to you and yours! You don’t even know it, but you’ve “introduced me” to some really wonderful people who made getting through 2013 much easier/better/happier for me and I thank you for that 🙂

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