Pessimistically Hopeful

Pessimistically Hopeful.

That’s what I’m feeling today. About a lot of things, but maybe that is really the way I’m describing my life right now.

I’m pessimistically hopeful because there are potentially some good and great things on the horizon, but when you add the real dose of life experience to that hope, I’m pessimistically hopeful at best.

To start, I’m using these pictures of this spiny cactus to remind myself that sometimes life emerges from the unexpected and thought dead. You see, we bought this spiny cactus last summer at a farmer’s market and it lived in its plastic container for almost a year sitting on the edge of the flowerbed, not planted..it was forgotten although I walked by it at least once a day and regularly thought we should plant it.. but I didn’t. Through the winter and into the spring it looked dead. I figured the couple of hard freezes had gotten during the winter must have killed it.

Finally, a few weeks ago, Doug planted it in our front bed. It was listless and couldn’t remain upright without a support. Doug put the old decorative fence piece next to it and let it lean on it. A few of the sections fell off immediately and it looked sad. Dead.

But it wasn’t.

The rain, the sun and nutrients from the ground has brought it to life. The once sad looking plant is beautiful and healthy and bringing forth amazing flowers.

And so, I’m reminding myself that sometimes life does actually deliver on the potential and possibilities. I know that sounds incredibly jaded and sad. But dang, the last decade has had some really tough lessons and lingering issues were the answers were never given and the dreams and goals never reached.

But today, I’m enjoying the beauty of the flowers and praying for that same gift for Maddie’s feet.

Yesterday we met with a new doctor, Maddie’s 31st specialist. We were never actually suppossed to see him. It was an incredibly strange set of events that got us to this Neurologist over five hours away. He was kind, and interested. He was caring and deliberate. And more than anything, he listened, he looked and he took his time. In fact, the appointment was at 10am and he spent an hour talking with us and then asked if we could come back at 2pm for testing. We did and after another almost hour of working with Maddie he gave us hope.

Maddie has been wearing AFO braces on both feet for almost a year after spending much of the previous year wearing walking boots on one or both feet when one day her feet just stopped working.

She has had every test imaginable and all come back normal. There has been no explainable reason for her feet not working. But Dr. Martin yesterday said, there is ALWAYS a reason, we just have to find it.

And he might have.

So Maddie will start physical therapy and has a plan and a goal.

More than that, we left hopeful and not defeated. Over the last dozen years, we have left defeated, disheartened and discouraged time after time from specialists. We either left with no hope or were treated dismissively as Maddie is a “complicated case.”

But yesterday, we were treated with care and dignity.

And so, I’m pessimistically hopeful.

I pray with my entire being that just like the cactus that has flowers blooming despite everything, Maddie will return to college in the fall being able to regular shoes some of the time and will eventually be free from the AFO braces. I pray that her body will grow strong. I pray that she will continue to bloom, just like she always has, despite the struggles that are put in her path.

Tips for Families with Special Needs on Enjoying Disney World

Disney World is a place of magic and wonder. Sure, it’s also incredibly expensive and crowded and hot… but those things just don’t seem to matter when you are standing in front of the castle at Magic Kingdom!

There is something so incredible about being at Disney World and the feeling of expectation and fun and hope. I don’t know if everyone feels it, but as a family that has lived in the world of doctor visits, special diets and treatments, diagnostic tests and rare diseases for the last 18 years, Disney World gives us a chance to live and love and laugh “just like everyone else.”

No, the problems that we face everyday don’t vanish on Disney time. But the problems just don’t seem so big or so hard. Instead of researching unknowns and sitting for hours in doctor’s offices, we research which restaurant to eat at and how to get the most out of “magic hours.”

So here are a few tips for families with special challenges from a seasoned Disney family! Truly… we just returned from Disney for the 5th time in 6 years.

  1. Plan early!

    We typically use a travel agent (Cowboy Way Travel) because they know us and know our needs. But Disney online and over the phone work great as well. I’ve just found that for our needs (two connecting rooms with ground floor access and a scooter), the travel agent can take care of everything and it works. And since we use a travel agent, we also purchase trip insurance. EVERY. TIME. It’s worth the cost.

    Also, by planning early you can make the best use of the early reservations for meals and fast passes. We are talking making plans 180 days out for dining and 60 for rides/attractions!! I know the needs of my family and waiting till the last minute to plan a trip means that you miss out on the best times for rides and meals.

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  2. It’s not an adjoining room.. it’s a CONNECTING room!

    Even as seasoned veterans, when we got to our rooms we found that we had rooms next door to each other, but not connecting! Uh Oh. This doesn’t work with an 8 year old! Disney defines adjoining as touching and adjacent as near by.. if you need the rooms to be able to open inside to each other, you need a CONNECTING room. Our rooms situation was easily remedied, but it’s an important distinction to keep in mind as at peak times you might not get a connecting room if you asked for an adjoining room!

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    Rooms at Riverside
  3. Speak up!!

    When you run into an issue, SPEAK UP! Give Disney a chance to fix the problem.
    One night when we ended up in a monsoon and the bus driver was horrible, we spoke up. Why? Because Disney cares and they work too hard for a bad experience to color the rest of the trip. Taking the time to talk calmly with the concierge allowed us to express our frustration and gave Disney the chance to make it a positive.

  4. If you need the disability access, USE IT!

    But, remember to take ALL of your family’s magic bands with you when you set up access at guest services. You only have to do this once each trip as the disability information is in the magic band. Also, once it is set up, any member of the party can “badge in” and request disability access to a ride/attraction. The key here is to manage your disability access as you can only have one outstanding at a time! The gift of disability access is that you don’t stand in line. It doesn’t make the wait go away, so plan accordingly! We know that we can’t wait in the heat/sun, so we go to shows while we wait for the next attraction.

    And if you haven’t seen Festival of the Lion King, it is WORTH IT!

  5. Plan down time.

    One of the hardest things for me to do is “waste” daylight at Disney, but I’ve learned that in order for Maddie to function for the duration of a trip, she has to have down time. So while the big girls napped, Kylie lived it up at the pool and the playground. Port Orleans Resort has great pools and a fantastic playground. Side note: besides being more spread out, Port Orleans is great for families as the rooms are larger, the place quieter and the amenities spot on.
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  6. Expect to wait for a bus.

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    Hands down, the most UNmagical thing about Disney is waiting for the bus to transport you from park to park or park to resort. If you are in a wheelchair or scooter, the wait can be a while as they only take one or two chairs on each bus. Sometimes these waits are in the rain and sometimes these waits can be an hour (or longer!). Plan for at least a 40 minute wait and then be pleasantly surprised every time you arrive at your hub and find a bus on its way in!

  7. Take your own ponchos and an extra pair of shoes!

    In case you didn’t know.. it rains in Florida. Plan on getting rained on.

    The ponchos at Disney are expensive and tear super easily. We purchase our own ponchos that are heavier plastic and bring them with us! Also, since Maddie uses a scooter, she gets a larger poncho that will fit over the scooter so that she can drive it and stay dryish.
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    Bring an extra pair of shoes.. or be like me and spend an hour sitting in the laundry room holding the door to the dryer closed with your back!
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  8. Find the accessible areas for watching the parades.

    Parades are really cool to watch. Unless you are in a scooter/wheelchair.  Find the accessible areas for watching the parades and take a seat on the curb. It was so fun to watch the girls watch the parade. We are big fans of the Fantasy Parade as it is at 3pm in the afternoon at Magic Kingdom and we can see that one. It just doesn’t matter how late of a start we get, we can’t make it to a firework or evening show as a family. When the sun goes down, my family fades fast.

  9. Ask to speak to the chef.

    IMG_2333If you have special dietary needs, Disney can’t be beat!

    We really wanted to eat at Be Our Guest.. I mean really, who doesn’t want to eat at Belle’s Castle?! But the menu options were not great for Lexi and Maddie who can’t have the normal breakfast items!  So we special ordered off the quick service menu and the chef came out and asked us a few questions and then like magic breakfasts for both girls appeared that were egg and milk free!  And it’s not just this one restaurant, it’s all of the Disney restaurants!!

  10. Make sure the other kids don’t get left out in the process.

With so much of what we do and who we are as a family focused on keeping Maddie well, our other girls get lost in the shuffle. Disney is a place for magic for them as we are able to devote special moments and memories for the girls by themselves.

Magic hours have become our special one-on-one times and are truly those magical memories that get us through some of the hard spots throughout the year.

Lexi and I stayed at Magic Kingdom until almost 2am one night!

And Kylie and I snuck away in the afternoon to Epcot one day and then Hollywood Studios one morning. Spending time with one child is so different than with the group!

I truly have so much more to say, but I’m thinking just this is overwhelming. So I’ll leave you with GO! Just Go for it. I know it’s expensive. But we spend SO MUCH MONEY on healthcare that we have to spend some on our emotional health and our family too.

I commented the other day to the girls and Doug that as we move into the next phase of our lives I don’t know that we will go to Disney as often. Lexi and Kylie were very quick to speak up and say that Yes, we will be back soon!