what matters

Katie has one of the leads in her school’s Fall play. Excited doesn’t begin to describe how she feels about it. Talk of rehearsals and the antics of the cast and crew have dominated dinner conversation for the last six weeks. She can’t wait.

The play opens tomorrow night. This is what’s known as Tech Week, or, to those in theater, the week when everyone gets sick because they’re so exhausted from endless rehearsals, last-minute tweaks and the attendant running around like beheaded chickens. It ain’t pretty.

Family and friends have their tickets ready. Grammy is driving up from Connecticut tomorrow. Aunts and uncles are coming. Even some members of the family we weren’t born with but chose along the way will be there. Yup, Miss Alysia and Gerry are coming.

And Brooke is coming.

Following the significant challenges .. okay, debacle, of the last show, we came up with a plan. Our sitter would be coming along with us. That way if Brooke couldn’t sit through the play, Julie could take her for a walk without me or Luau having to leave in the middle of Katie’s performance. I thought it was a pretty good plan.

And then yesterday, in the middle of the afternoon, I got a text from Katie.



So our pretty good plan has now been replaced by a really good plan. Today, after school, Brooke, Luau and I will see Katie’s play. The cast will get a ‘practice audience’ and we will get a private show. Because my kid thought of a way to make it work.

There’s a lot of talk about how hard autism is on siblings. And at times, it is. That’s undeniable. But you know what else is undeniable? The fact that, just as with everything else in this life we lead, there are gifts wrapped in the challenges.

My child is growing up to be one of the most thoughtful, compassionate, genuinely accepting people on the planet. And no, it’s not all because of her sister. It’s who she is. But the fact that her life with her sister is what it is, the fact that she had to learn early that authenticity means more than appearance, matters. The fact that she learned out of the gate that everyone has a story that’s worthy of telling, even if the telling takes some extra time and effort both to tell and to hear, matters. The fact that she was shown day in and day out that a successful life requires working with those around us, thinking outside the box to leverage each other’s strengths and mitigate one another’s challenges, matters. The fact that she has learned through experience that everyone has something beautiful to contribute, and that it’s up to all of us to ensure that they have the chance to do so, matters.

My twelve year-old daughter thought of a way to have her sister see her play.

And that … matters.


Katie on Nantucket, August 2o13 – just because

23 thoughts on “what matters

  1. Great post but overshadowed by wonderings of how you get the screenshot of the text message from “Katie” to say “Katie” and “Brooke”…..magic!

  2. I hope you never stop writing about your girls!! I have loved reading about them for three years now am so looking forward to seeing how their journey progresses. I know they are both destined for great things!! This just touched my heart…..again!! God Bless!!

  3. Love it. I so get this! Amy is insisting Jack come to opening night of Willie Wonka this year. We usually opt for the matinees, but she wants Jack to see her cast — (the show is double cast — she plays Mrs. Bucket in one.) So supercousin Erin is coming in case Jack wants to split. Amy’s song is in the first act, so hopefully he’ll make it. We shall see.

    Another cool thing about our show is that Willie Wonka in our show is autistic. Cannot wait to see Dylan shine! πŸ™‚

    Break a leg, Katie. We are all so proud of you!!

  4. We have one child. I feel so guilty because my son should have been a middle child of twelve. He is just that social and protective and loving. But I admit to not being as courageous as my son is–because I am too scared to make the commitment twice. I have one very beautiful little boy who changes lives every where he goes. He is a great kid. Yet, I hear so many sibling horror stories. I hear the bitterness of being the “forgotten child,” so as my biological clock ticks away, I steadily mourn the children I am not brave enough to have. I mourn the pregnancies and the smell of baby breath and the cooing and the drooling and the crawling. (I don’t mourn the diapers. Those haven’t finished going away so I never got to “miss” those, haha). I mourn the golden moments and little victories. Every time I hear Katie’s wisdom and brilliance through you, Jess, I think to myself–what if? What if I were to not have another child who needs me too much to properly share? What if I had another Ethan (my beautiful son), my incredibly intelligent, compassionate and even perceptive little buddy, or maybe even an NT (which to be honest, scares me just as much) who could be like your mature and well developed Katie? She’s brilliant, she’s smart, she’s self assured. I can’t imagine that she hasn’t had to learn her own fair shares of compromise, like dress rehearsal over opening night, but she seems the better, the wiser, the more developed for it…..what if…what if….what if….my heart just keeps begging the question
    …what if…?

  5. Once again I am sitting here crying in awe of the amazing young woman you and Luau are raising. Bravo to Katie for thinking of her sister’s and parent’s best interest. Tell Katie that a fan in Delaware says, “Break a leg.”

  6. Oh, that Katie! She’s a good egg! Lest she take it seriously, I won’t say ,”break a leg”, but instead, the best of luck to her!

  7. This is amazing that Katie comes up with these ideas on her own. Obviously she has had wonderful role models that have paved the way! I hope that my grandson learns to advocate for his little sister like this. He seems to be getting it. He just turned 6, and there are days that it is hard for him to breathe the same air. Then there are days he is looking out for her. We went to the library on Sunday for a playdough fun day. His sister was having trouble focusing on any one thing, and opted to do her own thing. While doing this, she was making friends with another adult that was trying to choose a book. This nice woman stopped what she was doing and interacted with Piper. Jared looked at me and said “Grandma, do you think we should tell her that Piper is special?” I told him that I thought that they were doing just fine, and that I was pretty sure she would understand how special his sister is.

    Good luck Katie! I am sure you will be fabulous!

  8. I am a silent “creeper” of your site. I don’t have kids, nor do I know anyone with autism. However, your real-life experiences/thoughts resonate with me. Your stories make me THINK…make me ACT..make me LAUGH,,,make me CRY (TALC). You are a GREAT mom and wife. I am sure your parents are proud too. Another mom with a different need may need your help/smiles now. Check out Chasing Rainbows on Facebook…Many thanks!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s