while we’re waiting


an old favorite picture that just feels right today


Continued from HERE

I’d love to tell you that Toys R Us was wonderful, that Brooke found her video and that all was well after that. But not so much.

They had TONS of videos, scores of which looked like they would be right in Brooke’s wheelhouse, but apparently, they didn’t have the RIGHT video. Brooke was wrecked.

I would have done anything for my girl in that moment. My helplessness over all of this – the seizures, the language loss, the not knowing – it was all there as I watched my girl melt into a puddle of toxic anxiety in the video aisle of Toys R Us. I might not be able to stop the electrical storm in my kid’s head, but I could and would take her wherever we needed to go to find a god damned video.

We found Katie and got back into the car. The bookstore was twenty minutes away. It knew it would be a long ride. Well, I thought I knew.

Three minutes down the road, I got pulled over.

As the officer came to the window to tell me that I’d been doing 40 in a 25, Brooke shrieked. As I explained that I’d bought the car the day before and that the registration hadn’t been changed over yet from the car I’d traded in, she screamed, “GO CAR GO!” He took my license and my old car’s registration and promised to be back. We were stuck.

Katie turned to Brooke. “Want to play a game?”

Brooke screamed. “NOOOOOOOOOOO!!!!!”

I took a deep breath. This was too much. Just too f$%!ing much.

Katie’s voice was calm, almost eerily so. Her words were slow and measured. Her voice was her Mama’s.

“Brooke, I know you’re upset, but we all are, okay? Everyone is on edge right now because we’re in a stinky situation. But we have a choice, okay? We can play a game and try to have fun while we’re waiting or we can just cry and scream and be mad that we’re stuck here.”

Initially, Brooke chose door number two and screamed. Loudly.

I proposed the Who Am I? Game and Brooke shouted, “I hate that game!”

Katie took a deep breath and loudly exhaled.

“Brooke,” she said, still calm and slow and measured, “how about the ABC game? We can do girls’ names.”

Brooke agreed.

The cop came back with a warning, for which I thanked him profusely.

Katie began with Anastasia.

I reached back and squeezed her hand. Later, I would tell her how much it meant – all of it. She would tell me that she was doing what she’s heard me do a million times. I would cry. But long before then, we’d get to the bookstore and find the perfect Elmo’s World DVD. And it would even be on sale for $6. A little nod from the heavens, perhaps.

This morning, Brooke and I are headed to Children’s hospital to get wired up for a 24 hour EEG. Last night, I let her pick five TV shows to download from iTunes. The iPad is now loaded with Blue’s Clues and Dora and Kai-lan. We chose books to bring – Owl Babies, Dora’s Starry Christmas, and her all time favorite, HUG. We’re bringing the Eegy Sheep and the Gummy Bear blanket. Kiki, Brooke’s imaginary twin, is coming along because, as Brooke tells me, “she needs an EEG too and EEGs are very important.”

The last thing I said to Brooke last night was, “We’ll have fun tomorrow, okay? I know EEGs aren’t always so much fun, but we’ll have a good time there, okay?”

She agreed. She and Kiki are both looking forward to watching their videos and reading their books at the hospital. And, although it sure as hell isn’t my location of choice,  I am looking forward to spending time with my girl.

Throughout it all, I will hear my big girl’s voice in my head, like a prayer.

Everyone is on edge right now because we’re in a stinky situation. But we have a choice, okay? We can play a game and try to have fun while we’re waiting or we can just cry and scream and be mad that we’re stuck here.


38 thoughts on “while we’re waiting

  1. At moments like that we all need a “Katie” in our lives…Any chance you will let me borrow here for a few weeks, a couple of months…Heck what about forever…You and Brooke are in my thoughts today…Stay strong Mama…You will be home again soon.

  2. Your katie is an amazing young woman. I hope my little Ainsley will be the same. I often cringe when I think about the hurt and challenges she will have to face at such a young age. At only *almost* 17 months, she has no idea yet. It won’t be easy, for any one. But I know she will be amazing because of it.

  3. Wow. Just…wow. Your Katie is an amazing child. My daughter is younger than my son (who has ASD and severe ADHD as well as SPD) and she finds the words to comfort him better than I can at times. And she’s seven. Good luck today.

  4. Katie is amazing! You are amazing. Luau is amazing! Brooke is amazing!
    …and att this moment Grammy feels utterly helpless. I love you all so much it hurts!


    • Grammy (and I love that you call yourself that, because that’s what I grew up calling my grandmothers, and I miss them both) shouldn’t be feeling helpless – maybe you can’t do much to help today, but you obviously did a hell of a job raising your daughter, and she’s doing a hell of a job raising hers! You guys are clearly a really special family.

  5. I love that girl. She has her mama’s heart and wise words of comfort with a Katie twist that is all her own.
    And love for Brooke today and every day too. Thinking of you all this morning.

  6. I can’t say it any better than your own mom did, Jess — Katie’s amazing, and she’s amazing because you are. Thinking of you all today — I so hope it goes smoothly for Brooke (and Kiki, of course).

  7. Thoughts and prayers are with you today and everyday. I am starting this journey, again. Referral to neurologist for severe headaches that come out of no where and force my dear child to sleep for 4-7 hours when they strike. Becoming more frequent, from 1 every week to 10 days a few months ago, to 3-4 days a week now. Entirely debilitating, for him and for me. I feel backed into a corner, and I hate it because there is nothing I can do. :/

    Thoughts and prayers and hugs. We will get through this! 🙂

  8. Katie….such a trooper who has learned from the best…her Mom and Dad. I hope all goes well and Brooke chooses the game!! Goc bless you all. xo

  9. Katie’s words are so right for that moment. They are also right for a lot of the moments we find ourselves in on this autism journey. The are the rights words for life’s challenges.

    I think Katie needs a webpage of “Katie-isms” or “Katie quotes”!

    Good luck today – have as much fun as B and Kiki can handle!

  10. I have always said that my son would not be the person he is today if it wasnt for his sister…….his special sister…….

  11. I love you all so much and I’m thinking about you today, sending love and many ke-mo-ky-mos to you. By the way, I happen to be in the middle of reading a couple of books about choice and choosing. Katie knows and is able to articulate more about the power of choice than people who have studied it for years. PS. I needed to see that picture today! thank you.

  12. How old is Katie again? Please say 50. Because I’m 49, and I don’t have the ability to keep calm and be caring like that, despite having a child very much like Brooke. I’d really like to think that I still have a chance to grow into Katie’s level of maturity.

  13. Lovely post. Very best of luck for today with the EEG. You’ve touched a lot of lives in many countries – there must be an awful lot of good karma floating around for you and your family – I’m adding mine to the mix. Xxx

  14. I just want to thank you from the bottom of my heart for being so open, honest, making people aware! Like I said your Brooke reminds me so much of my little Jacob! I never realized that seizures can happen without the symptoms you expect! My little guy often just stares out “into space” or drops to the floor like he falls (figured he was just being clumsy) I made a doctors app next week with him to express my concerns to the doctor. If it wasn’t for you I would have just wrote it off as Jacob just being Jacob! You are an amazing woman and helping other families in so many ways!!! Thank you thank you thank you!!! Hope Brooke is doing ok today! Such a brave and strong little girl just like her mama!!!

      • thanks Jess! ive been laying in bed with him the last 2 hours waiting for him to fall asleep ( he sleeps with me i know not good) i counted in the 2 hrs he would really move his legs every 10-20 seconds..not sure what thats all about. hugs to u too! hope brookes doing well with her dora princess hat still!

  15. You’re raising beautiful girls. It’s stinky, yucky gross right now. But you’re getting through it. Sending stacks of warm thoughts. Bless you and you’re family,and thank you for always being real.

  16. I know the main idea of this blog is the A-word (Autism, not that other a-word) and your experiences and direct dealings with Brooke’s world, and not to diminish anything about that because I’m a huge fan, but…

    Katie- wow! Katie could RULE THE WORLD!! What an amazing person she has become. Her heart shows with everything she does with and for her sister. I hope and pray my nine year old learns to be as noble and selfless for her special needs sister and can bring those same acts of kindness into the world for others in need.

    Kudos, Katie!

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