unpacking the memories

As we rode our last monorail headed back to the hotel, Katie was wistful. “I’m really gonna miss this place, Mama,” she said. “Aren’t you?”

I couldn’t answer. I knew what my answer was, but I didn’t have the heart to say it. No, I wouldn’t miss this place. I was ready – more than ready – to go.

The trip was, in many ways wonderful. Its highs were soaring – liberating, exhilarating, magical. They were truly the stuff from which a family’s memories are made.

I will never, ever lose the image of Brooke’s face on the Big Thunder Mountain Railroad – one of the rides that she insisted that we ride again and again and yet again still. I will never forget her giggle as we whipped around the banks and sped over the hills.

I will carry with me forever the look of perfect joy on her face as we zoomed over the Test Track, her arms high above her head – a short, staccato ‘Whoop!’ escaping at each turn.

I’ll never forget her hugging the characters with everything she had, thrilled beyond belief to see them live and better still, to interact with them in her way.

I’ll never forget Brooke climbing onto Katie’s lap so that Luau could push them both in the wheelchair, playing a game that they invented years ago – Katie pushing gently on Brooke’s tummy and eliciting giggles as she said the magic words, “Belly, Welly, Welllllllyyyyyyy!”

I’ll never forget meeting my utterly fabulous blog friend, M and his wonderful girlfriend, Sarah for lunch. I adore M. Have for years. But until Wednesday, I’d never met him. How odd it is to have so much background, so much context with someone you’ve never met in person. But there he was, live and in 3D – all the more vivid in his M-ness. It was one of those gift from the universe moments – visiting with him, hearing his voice, seeing his deliciously dry humor come to life exactly as I’d read it for so long.

I realized later that I’d experienced what Brooke had been feeling all along – I’d gotten to see a favorite, well-loved character in person for the first time. And it was wonderful.

I’ll never forget riding Splash Mountain with Katie, laughing until we couldn’t breathe as we realized that we’d braced ourselves for what turned out to be a tiny dip – the huge splash still awaiting us around the corner.

I’ll never forget the night that she and I wandered alone through Epcot, then stopped to watch the fireworks. I’ll never forget her looking up at me and saying, “Thank you, Mama. Thank you. This really is magic, don’t you think?”

I’ll never forget my day alone with Brooke when Luau took Katie off to Universal Studios to visit the Wizarding World of Harry Potter. I’ll never forget the joy of being so close to my girl – being able to go anywhere she wanted to go. Heading to the Magic Kingdom first, riding all of her favorite rides – Pooh, Peter Pan, Small Word, The Haunted Mansion, Snow White, Thunder Mountain and Splash Mountain and then hopping the monorail to Epcot to ride Spaceship Earth, the Test Track, Soaring and the Tour of the Land. That day was simply a slice of heaven.

I’ll never forget getting caught in torrential rain that evening coming back from Epcot – Brooke saying that she hoped we were colored in so that we didn’t get erased by the rain.

I’ll never forget the language, the glorious, beautiful language that enabled her to say, “I’m so very mad about the rain,” and “I’m scared at the thunder noise.” I’ll never forget taking off our shoes and splashing through the flowing waters on the street back to our hotel or sticking us both straight into a warm bath when we returned to escape the chill of being soaked to the bone.

Yes, the highs were magical. And in the end, I don’t doubt that their light will eclipse the darkness of the tough stuff.

But for now, the wounds are still raw. I still can’t shake Katie’s face as she turned around to catch me softly crying as I pushed her wheelchair. “Mama,” she said that day, “I’m really sorry it’s so hard. I understand. It’s hard to be a sib too, so I can only imagine what it’s like for you.”

Nor have I yet managed to find distance from the memory of Brooke spinning out of control at the Bippity Boppity Boutique. As excited as she’d been, as much preparation as we tried to put in, as wonderful and patient and kind as the Fairy Godmothers were, even they didn’t have the right kind of magic to get my baby girl through the one thing we’d been talking about since the moment we’d planed the trip. No one did.

And so those memories flew home shotgun with the others. I can’t recount them all. I don’t have the energy nor if I’m being honest, do I want to. I just don’t want to live there today.

One I know I will need to address, so I will as soon as I can. For me, for my girl and above all for every child who comes to Disney deserving warmth, love and respect from the characters they adore. But that day is not today.

Today, we will unpack our bags and take our time sorting the memories held within. Setting some moments aside for tomorrow and making sure to relish some (like the one below) today.

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Ed note: Many of you have asked for my ideas / tips / suggestions on navigating Disney with an autistic child. As different as our kids are, I’m not sure how useful our experience will be, but I’m happy to share what worked (and didn’t!) for us. I will do my best to put something together relatively soon. 

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31 thoughts on “unpacking the memories

  1. We did Disney last Christmas, just a few short months after coming to terms with the reality that my then 3yo was on the spectrum. This post brought me to tears, remembering it all. The good stuff was so so good, but the hard stuff was so so hard, more than once leaving me sobbing into my husband’s chest at the end of the day.

    I, too, was glad to go home…

  2. Glad you are home again and on familiar ground. That’s the rub of vacations, isn’t it? So much excitement, so many expectations. Seems autism doesn’t care that it’s supposed to be smooth and joyful 24/7, dammit. Here’s hoping that the magical memories outlast the tough ones and that the tough ones hold some sort of kernel of a gift within. Even if you can’t see it yet.

    • that is a beautiful thought, Niksmom – the tough ones holding some sort of kernel of a gift within. Jess, it’s always shades of gray at Disney for sure. Loved hearing the memories. *hugs*

      • Redheadmomma, sometimes that’s the only thought that lets me get through the tough stuff…the belief that there HAS to be a gift, a lesson, SOMETHING of value in it. Even if I can’t see it until much, much later. Sometimes, I never see it, but I’ve already moved on so…*shrug*. LOL

  3. hold onto those happy ones. the others will fade. thinking about this post made me think of our trip back in March and it took me several moments to even think of any challenges we had. i know my boy had a few but the joyful moments have really started to put the others into shadow and i know that for me and for my monkeys, it will all be magical (well, my hubby will remember even the challenges because he has this ridiculous ability to recall every detail of everything)

    above all our trip to Disney made me more aware that magic takes a lot of hard work but i would do it again in a heartbeat :-)

  4. Many of my vacation memories are clouded with terrible times. When I look back on them even years later those emotions I experienced with my Aspie son come right back. That, I think, is one of the most cruel things about dealing iwth this…. the black cloud that always seems to be following us ready to burst at any moment to drown our joyous times. It seems that I have very few wonderful memories without heart wrenching ones.

    You’re home now…take time for yourself..to regroup.

  5. We leave for Disney in 2 1/2 weeks. Scared for the challenging times, excited for the special times. It’s amazing how disney can bring both out in a child in a single day. I know this time we go and we are finally potty-trained. How exciting to not have to be in a stall trying to change a six year olds pullup. Thanks for showing me that I’m not the only out there navigating this path. There are days I feel truly alone!

  6. You could have stayed home, away from the the “typical” vacation, but you didn’t.

    You could have brought the whole family in from the autism storm, but you didn’t; you made sure Katie had time alone with you.

    You could have collapsed in a corner, refusing to continue, but you didn’t.

    You and Luau push onward and don’t allow defeats to stop you longer than they need to (as far as I can see).

    I would call this a victory. Go ahead and lick your wounds – you deserve and need to. However, each and every scar is a reminder of how much you all have gained.

    Thank you for baring it all. You are loved and appreciated.

  7. There is an entire book about visiting Walt Disney World for people with (all kinds) of disabilities – Pass Porter Open Mouse for Walt Disney World!

  8. I am at my desk with tears streaming down my face reading this. I understand…..and can relate. Welcome home. Vacation was really just another everyday life experience, with both good and bad. As always, you found the words to celebrate the positive – I hope the “less positive’s” fade from memory very quickly so they sting less.

  9. glad you’re home safely. vacations and being out of our comfort zones are always very very hard. but you did it. and made magical memories for your children and you. In time, that will be what you remember.

  10. Autism doesnt take vacations unfortunately, and it can be a heavy bag to carry around a big park like that. BUT so many beautiful memories made, and an experience for growth. Still, there’s no place like home!

  11. “Thank you mama, thank you, this really is magic”……great childhood and family memories, that’s what matters. That’s what childhood is all about and you provide that in spades.
    Love you all!!
    Dad

  12. For those who aren’t aware, if you bring a letter from your doctor with your child’s diagnosis to Guest Services at any of the Disney parks, they will give you a special pass which allows you to use the Fastpass entrances at all rides. We did this last year during a jam-packed Star Wars weekend and it (and the Disney staff) were wonderful.

    • Yes, the GAC card is crucial. We went in ’07 when my son was 9 and I planned it like a military exercise after reading for weeks and weeks. Lots of resources out there that describe everything, so you can plot out what to target and what to avoid. My son surprised me so much, trying more than I ever thought possible (with and without coaching); Expedition Everest !?!. We went strategically during a slow, cooler time too, which helped us. Loved reliving it through your post Jess, thanks.

      • the guest assistance card is worth its weight in gold. our trip would have been disastrous without it (or in our case ‘them’ since we had one child in a wheelchair and one with autism this trip – mercy). i mentioned them in my last post, but promise to include more details soon.

  13. I am also glad you are home safe. As I read this post and so many other ones you have written, I cry. I also know your ( I don’t even know the words for it) pain. We went one vacation too this summer the the beach. It was very difficult for my son. We only went to the beach one time and it was only maybe an hour. In that hour I was soooooo mad at Autism!!!!! He lost it as soon as we got there and really the whole hour we were there. We have 2 other children and they were in heaven. I tried everything I could think of to make him happy and nothing worked. How many times we have to make our other two leave something that they are loving so that Kaiden can be ok. They really are as great about it as they can be. My heart never knows which way to turn. My heart hurts for Kaiden because I know he just can’t do it, yet it hurts for my other two because they can never seem to enjoy anything. I was outraged. And when I was able to calm myself down all I could do was cry…….over the guilt. On most days I am the proudest parent of an Autistic child. Its just that every now and then moment that I just get sooo upset that I can’t fix the problem. I am so glad to have found your page and have been able to read all your posts and as so many others can relate. I feel your feelings and know your life as mine is in so many ways the same. Thank you!

  14. And that is why I’m terrified to take Cymbie on vacation anywhere…even on a day trip. Glad you’re home and can regroup, and he, school starts next week! Back to the routine and structure our girls thrive on !!! Hugs!

  15. It just seems so crazy to say that taking our kids to Disney is a brave thing to do, but truly, on so many levels, it is. We’re planning on trying it a year from now, and I can’t wait to read your suggestions, particularly for my youngest son. So sorry for the painful moments that aren’t supposed to occur on a vacation, and so thrilled that all of you had so many joyful ones as well. Hope you can get some time to recuperate!

  16. “As different as our kids are” – isn’t that the truth. I showed my daughter photos of Brooke hugging the characters as we’re going in October. She got upset and said “But I don’t want to hug!” I then had to reassure her that she could view them all at a comfortable distance. Thanks as always for sharing your experience.

  17. Yes, savor the magical memories – thank God for those. And meeting M – how fantastic! I agree – meeting our blog friends is exactly like having your favorite characters come to life!

  18. Pingback: Family Services Office Hours – 09.08.11 « Autism Speaks Official Blog

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