A year or so ago, Liam’s doctor recommended applying to have our family granted a ‘Dream Vacation’. He told us that this would be a great age to go since Liam is old enough to show his own interests and still young enough that he is able to participate in many activities.

We were granted our trip by a wonderful organization called Earth Angels.

We immediately felt loved and cared for by the volunteers in this group. You could see in their eyes that they genuinely wanted us to relax and enjoy this opportunity. Liam was asked what he might like to do on a dream trip. Being 8 years old at the time he didn’t quite feel confident with giving a response. Liam quietly, and respectfully asked if maybe, um, if it wasn’t too much to ask, he could go to Great Wolf Lodge? Our Earth Angel friends said “think bigger.” Liam’s eyes widened and he then knew what he really wanted would be acceptable, “Harry Potter World!” he said. “Oh, we should probably go to Disney too, ya know, for Lydia to see the princesses” he added.

The boys are ready to fly!

Over the next few months we received the details that our flight, resort and park tickets were organized. Every vehicle transfer from hotel to plane, plane to hotel, park to hotel, etc. were all covered as well. We knew we were in for a treat. A week before the trip we met with the generous folks at Earth Angels again and they wrote us a check. They covered every last dime of this trip. All food, souvenirs, and any random expenses that the trip might include. They reassured us that we will not spend a dime.

Earth Angels set us up with a hotel on Friday night at the Columbus Airport so that we didn’t need to wake early on Saturday and make our day even more taxing. We had a bit of a hiccup as Lydia needed to be taken to a Minute Clinic and was diagnosed with Strep. It wouldn’t be a vacation with kiddos unless someone was sick! 

In the morning we had a lovely breakfast with our Earth Angel friends at Max and Erma’s. The kids couldn’t wait to get on the plane as this was Lydia’s first flight and the first flight Liam remembers (he was a toddler when we went to Italy). Southwest was very helpful in guiding us on how to handle Liam’s power wheelchair. Mark and I were very nervous on if the chair would arrive in Orlando without any damage.

It was so sweet to watch both our children, sitting comfortably in our bulk head seats, looking out the window as we climbed above the clouds. I don’t think flying will ever get old for me, it’s so amazing.

Upon arrival in Orlando we saw Liam’s chair had arrived with no damage, shew! This was a big relief as any damage to the chair would have meant Liam couldn’t be independent during the week and that we then would need to schedule service upon return. Yet another doctor’s appointment is not ideal.

Orlando greeted us with a sunny 82 degree day. The weather couldn’t have been better during our stay. Everyday was warm enough for water play, but not too hot to enjoy. 

Traveling with someone in a wheelchair adds all sorts of questions. Will reliable transportation that we reserved show up? Will our hotel room be accessible, even if requested, will in actually be available? Will the driver of any bus/van be confident on how to use their lift? Will they treat Liam’s chair with respect when they tie it down before travel? Will other people on the bus move to allow for Liam to maneuver his chair into position? Will the elevators be working? Are the elevators central or will they be in some far off corner?

Lydia and Mark working their magic!

When arriving at the Cabana Bay resort at Universal Studios the kiddos got a kick out of the 50’s music and decor theme. We talked about how the kids in the videos being shown around the resort would now be Nana, Pa and Baba’s ages.

Liam couldn’t wait to get into the park, so off we went to explore. Being a bit clueless we didn’t bring the right tickets and ended up just walking around City Walk and getting dinner including all the sugary treats the kids could want. After all this would be a “Yes WEEK” instead of our typical “Yes Day”.

Wow! The dragon heat was intense!

It was a good thing we waiting until the morning to make our way to the back of the park for our first visit to Diagon Alley (one of the Harry Potter parks) as the kids were fresh and ready.

Nestled in central Florida is one of the most incredibly detailed and awe inspiring streets you will ever experience. Our jaws dropped when we came around the corner and rumbled over the cobble stone streets under our feet. For any Harry Potter fans you absolutely must visit this park. For those of us who haven’t read the books, you still need to go. It was absolutely incredible. The detail in making the park was astonishing.

The children were eager to choose their interactive wands and get started casting spells around the park. Liam had his eye on Professor Dumbledore’s wand and Lydia picked Hermione’s. The park provided many opportunities for wand holders to practice their spells and make the park come to life. Some of these spells included raising a feather, making it rain, turning lights on and off, or making a pile of dragon poop shoot out a stink.

With our bellies full of butterbeer and fish and chips we felt pretty lucky to give Liam the chance to ride some roller coasters. Because of his neck weakness and future heart issues this will not always be an option. Universal Studios employees immediately sent him in the Express lines and then told him he could ride twice in a row if he wanted. He understood that he was lucky, and without those long wait times he had a truly amazing experience. Waiting in line would have been too much for him, and we are so grateful for the special treatment. 

The Hogwarts Express gave us a unique experience as we rested on our way to Hogsmeade. It is pretty impressive that you feel like you are in England when you are actually in Florida. Job well done, Universal and JK Rowling!

This trip included LOTS of walking/wheeling, sleeping fast and hard, eating way too much (usually filled with sugar) and being smart about taking breaks when we needed.

The Hogwarts Express

We were lucky enough to spend a full day at the Volcano Bay Water Park. Our kids LOVE water parks and it shows with their sweet smiles. Mark and I both had our time to ride the big kid rides and we even talked Lydia and Liam into riding a kind of scary boat ride. I’m so glad they both stepped out of their comfort zone and found that ‘kind of scary’ can be really fun! 

Water parks are not power wheelchair friendly. Mark and I have become very comfortable with advocating for our boy. Most businesses want to be accommodating and do their best to make sure that Liam has a positive experience. At Volcano Bay we walked in and told the employees the best way to support our boy. They did everything we asked and with a smile. It is further proof that confidence in yourself and knowing what you need will give Liam the life he deserves, the life we all deserve. 

On to Disney. We enjoyed two mornings of the Magic Kingdom and two evenings at Animal Kingdom. Everything was way over the top and the kids took full advantage of our ‘Yes Trip’. Lydia chose a princess dress and heels and Liam had an Avatar action figure designed to look like him. These are both items that we would not have had the chance to buy for them had we come on our own. Thanks to Earth Angels we didn’t hesitate to say YES!

Betsy’s Top 5

1. Lydia’s face when meeting Ariel.
2. Liam’s face when the Gringotts Dragon breathes fire.
3. Mark dancing in the streets with Lydia.
4. Snuggling with Liam and eating our chocolate frog.
5. Liam giving me encouragement to be ‘brave’ and ride the coaster with him.

Mark’s Top 5

1. Experiencing Liam’s first airplane trip (that he remembers; second if you count the flight to Italy when he was one).
2. Discovering the amazing detail with Liam and Lydia in regard to the interactive wand experience at Diagon Alley and Hogsmeade.
3. Experiencing the incredible thrill rides with Liam: ‘Escape from Gringotts’, ‘The Forbidden Journey’, ‘Transformers: The Ride-3D’, ‘Star Tours’, and ‘Avatar: Flight of Passage’.
4. Convincing Liam and Lydia to ride the Krakatau water coaster at Volcano Bay.
5. Seeing Lydia determined to master the dance moves in Africa at The Animal Kingdom.

Liam’s Top 5

1. Forbidden Journey Ride at Harry Potter
2. Avatar design and figure that looks like me
3. Avatar drumming show
4. Flight of Passage Ride in Pandora
5. I got a really neat wand- the Elder Wand!

Lydia’s Top 5

1. Cinderella’s Castle
2. Merry Go Round
3. Mickey Mouse Rice Crispy Treat and Popcorn
4. Cinderella dress and light up shoes
5. Volcano Bay Water Park

If you find yourself looking for an opportunity to contribute financially somewhere, I assure you that this group is worth while. Our family initially felt guilty about the use of funds to go on this trip. We know the enormous cost of basic day to day needs when you have a child with special needs. We also know that life is worth living and when given the opportunity to take our children somewhere special is given to us, we need to take it! We are beyond grateful to Earth Angels for sending us on Liam’s DREAM TRIP! Thank you!

Mothering a child introduces a unique kind of love. The kind of love that rocks you to your core.

It’s true.

We meet this wrinkly, squishy stranger and we know things are different now. ‘Mother’ is a special title. We know when our babies breathe just the slightest bit differently, even from four rooms away. I realized I was doing fine as a mother the day I discovered one of my long brown hairs was the cause of Liam’s infant cry. It had wrapped itself around his toe. Who would check for something like that? You know who, a mother.

The joy that comes with motherhood is indescribable. Seriously, I’m not even going to try. You know what I’m talking about, because it’s in our bones.

The pain that comes with motherhood is something entirely different. The kind that makes you forget to breathe.

As a culture, we are taught to believe that we can work hard and fix problems. What if the problem is something that you can never, ever change? Something that rips away all your hard work, and all your visions of what the future should look like?

Early after Liam’s diagnosis there were moments of falling to my knees, punching the ground, while screaming but making no noise. Within minutes, I wiped my tears, and greeted a sweet, bright eyed, very lively little boy asking for apple juice. He was the reason I was falling apart, and he was the reason to get back up again.

He was right in front of me. Right there. Alive and happy. I remember saying that I felt like I was grieving his death. The future that I had imagined for him was crashing down. I was blind to what Liam’s life was going to be, I just knew what I thought happiness should look like. My sweet husband reminded me that everyone experiences joy differently, and Liam would have joy too, it might just look a little differently than mine.

My sweet friend Elizabeth sent me the essay Welcome to Holland written in 1987 by Emily Perl Kingsley. Kingsley wrote of the shift in perspective when your expectations of parenthood are met with the reality of parenting a child with special needs. It’s not what you expect, but it is still beautiful, full of adventure, and a bit foreign.

When I first read the poem I thought, I have zero interest in Holland. I signed up for Italy. Italy is what I dreamed about! My trip to Italy was going to give me hiking through Bachelor Woods. My Italy would give me the chance to  teach my son how to ice skate. My Italy was going to be letting him run loose with buddies and not having to worry if he is getting too tired, and over working his muscles. My Italy was imagining Liam driving. Liam living independently. Liam having the chance to show off his sweet white guy dance moves at a bar in his early 20’s.

I’m here to report that Holland has dark, stormy days. Holland is also spectacular.

Liam may not be able to skate, walk more than 100 yards at a time or run a 5K with me, but that’s ok.

Liam keeps showing me that even though I can’t “fix” his tired legs, we find a way to make it work.