Welcome to Your New Job

So…you’re a special needs parent.

Maybe you just found out. Maybe you are finally coming to terms with it. Maybe you are just coming out of a fog of exhaustion and hospital stays and trauma. Maybe you signed up for it by adopting a child with known issues. Maybe you had a child involved in an accident or get sick.

However you got here, you’re here, and it’s not a vacation.

You have a new job.

You’re a special needs parent.

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And it is a job. A hard one.

A good one.

But you can’t just phone it in. Your child needs you.

Desperately.

You’re now the CEO of a small business known as: Your Kid.

And you’re in charge of everything.

Finances, Human Resources, Consultant Management, Marketing, Research, Administration.

It’s on you.

And goodness, isn’t that overwhelming?

It is. You can say it. It’s super duper overwhelming.

And you’re not going to get a handle on it all at once.

Not even close.

But you need to treat this like a job. Even if you have another job. Even if you have other kids. Even if you’re tired.

Even if.

Even if.

So what does that mean?

That means you step up to the plate.

That means you work your hardest to figure out what your kid needs and get it for them.

That means you figure out how to be GOOD at this job.

And how you’re good at this job isn’t going to look the same as how someone else is good at this job.

It won’t.

You are unique.

Your child is unique.

Your situation is unique.

But you have strengths to bring to the table, both for your child’s care and for contributing to the special needs/disability community as a whole.

We need one another.

Our kids need us.

Own it.

Welcome to your new job.

You’re a special needs parent.

special needs mom

 

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Exhaustion: Leveling Up

Let’s talk about exhaustion, shall we?

And not regular exhaustion, but Medical Mama Exhaustion.

This isn’t to bash anyone else or to downplay other people’s experiences. I’m writing about my experiences. You’re more than welcome to write about yours.

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See, I’ve done the regular exhaustion. My first daughter wasn’t fond of sleeping. I remember that blur.

But I had NO idea how exhausted I could actually get until I became a special needs mom.

When our daughter first came home at two months old, she thought nights went from 3pm to 3am. Yeah. Fun. And I couldn’t do the old ‘sleep when the baby sleeps’ thing because she still needed tube feedings even if she were sleeping. And she still needed trach suctioning. And she still would kick her legs and set off her alarms.

And I still tried to do ALL THE THINGS during the day! Look at me! I can handle EVERYTHING!

Yeaaaaaah, I stopped waking up to her alarms within a month or two.

And fortunately they were false alarms and fortunately my husband heard them.

But that’s a dangerous level of exhaustion when you have a medically fragile infant.

Eventually we cut out the tube feedings we were doing at night and slowly shifted her towards a more normal night schedule.

I began to accept I couldn’t do ALL THE THINGS and still be an effective night nurse, but for the next…oh…three years? Yeah, it would have been about 3 ½ years, I would get up with her anywhere from 10-15 times a night.

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And it wasn’t the type of waking that I had done with our older daughter, that groggy assessment of what type of crying it was and grabbing her to nurse back to sleep.

No, this was the “I don’t know if that alarm is real or false” or “I need to wake up enough to get a teeny tiny suction catheter into a slightly less teeny tiny trach” type of waking up.

At 3 ½ years old, Evie’s pulmonologist opted to put her on CPAP via a ventilator (you can’t do CPAP on a trach with just a regular CPAP machine) to help deal with her aspirating (blowing air upward from her trach would keep her saliva and such out of her lungs).

At first, it was terrible as it stirred up all the junk in her lungs from years of aspirating. She coughed so much and I was up even more for several weeks.

But then, the clouds parted and the sun started shining and birds were singing. There was probably even a rainbow or two, maybe some ethereal singing, and I’m not even kidding, I contemplated covering her vent in heart stickers and writing it a few love sonnets.

*brushes aside a tear*

I love that vent.

Now, unfortunately that was paired with all sorts of other medical issues going on, so I wasn’t really catching up on a sleep just yet, but Evie’s lungs got so much healthier and eventually we got to maybe just a 2-3 wake ups each night.

It was heaven.

We had some setbacks, like when she started breathing more out of her mouth and nose (yay!) but that meant her vent couldn’t read her breathing and alarmed about SEVENTY times a night (boo!!!).

We got it resolved after several weeks with the help of her home care nurse (I was so exhausted, I couldn’t even register the problem or figure out what to do about it).

I started sleeping, really sleeping, and it was…well, it was actually terrible.

See, you get used to chronic exhaustion. You don’t. But you do. You get used to the tightness in your chest and the fog in your head and you don’t have a choice but to just get on with life.

But then you start sleeping.

And your body goes “ohmyWORD, I’m soooooo tired. I’m so sleeeeeeeepy. I don’t think you should keep your eyes open today.” It was miserable. I have never felt as sleepy as I did after I started sleeping again.

It was a solid two weeks of that, but then things improved dramatically.

I wasn’t pumping myself up on a caffeine all morning trying to get moving and then dealing with the massive anxiety that would hit early afternoon. My body didn’t ache like it had for the past how many years.

Since then, my sleep has continued to improve, though now I’ve noticed that if we have a bad night or several (or a full week. Thanks to whoever passed this cold onto us), I don’t bounce back easily. I don’t have any reserves built up yet and even one bad night can take me a solid week to recover from (I’m hoping the fog clears by Christmas from this little stint).

All this to say:

Medical moms are EXHAUSTED. We’re massively exhausted. Because it’s not just the sleeplessness.

It’s the anxiety.
It’s the worrying.
It’s the role of caretaker.
It’s the doctor appointments.
It’s the research.
It’s the hospital stays.
It’s the PTSD.
It’s the nightmares.
It’s the grieving.
It’s supporting friends as they grieve.
It’s trying to be a mom to other kids.
It’s the endless pressure to never ever ever mess up even a tiny little bit.

Many of us have only had a handful of restful nights in several YEARS.

Most of us are in pure survival mode.

So guess what?

Our houses might not be the cleanest.

Our conversation skills are probably pretty terrible.

That filter that keeps you from saying stuff that maybe you shouldn’t say? It doesn’t work all that well for us anymore.

We’re probably swinging between a cold robot who has to suck it up and do what needs to be done to keep our kid alive or an emotional trainwreck who hasn’t yet processed years and years of trauma.

We’re unlikely to be a good option if you’re seeking sympathy for typical parenting woes. It’s not that those aren’t legitimate concerns or struggles. It’s that we struggle to not be jealous of those problems.

We probably aren’t going to have the energy to deal with too much nonsense.

(Oh, the mom you know has nursing at night so she has no excuse? Yeah, because those nurses totally show up every night and they never just call in sick at the last minute or maybe just don’t show up at all. And those moms totally never have to step in and stay awake all night at the drop of a hat. And that rest when the nurse is there is so completely restful as they worry about their child and worry the nurse is staying awake and worry about someone being in their house.)

What it all comes down to, though, is this:

We’re exhausted.

Really exhausted.

And we’re struggling.

And we need you to be gracious and patient with us.

And if you can’t do that, that’s okay, too.

As long as you show yourself to the door.

Because we’re too tired to point you in the right direction.

*yawn*

Is it bedtime yet?

No?

Coffee, please.

special needs mom

Her Story is Not My Story

Okay, so this has been one of the biggest struggles of coming back to write again.
Evie’s story is NOT my story.

It’s hers.

And while, of course, her story has greatly impacted how my story has gone, it’s still not my story.

When she was little, when she was struggling so badly, we wanted to share what was going on.

I don’t think there was anything wrong with that.

We wanted your support and prayers and encouragement. We needed them.

But now, things are (mostly) calmer and I’m trying to figure out how to navigate these new waters.

 

But I still want to share my story, even if it’s not her story.

Because she’s changed me. She shifted the whole course of our lives. She forced us to really whittle life down to its bare minimum of priorities.

 

Parenting, in general, changes you. It’s inevitable. It’s a marathon of figuring it all out.
But parenting a medically complex child*…wow. It feels a lot less subtle.

It’s a marathon still, but it’s like a marathon of sprints with you chasing after a bear that’s chasing your child (and if it’s my kid, that child is probably laughing about it and doing everything possible to make your life harder because it doesn’t matter how many extra attachments your kid has, they’re still a kid and kids, man, they love to just be difficult sometimes).

 

But yeah, there’s a bear. Actually lots of bears. A whole…herd? *googling* Wow. It’s a sloth or sleuth of bears. That’s…interesting. Why do I feel like that makes the whole analogy even better? Let’s just use sleuth because that’s just kind of fantastic, isn’t it?

 

So yeah, a sleuth of bears (honestly, though, who comes up with these things?).
And you can’t stop.

You can’t rest.

You can’t just take a moment, because if you do…

 

And that’s hard.

It’s a lot of pressure for a long time.

Don’t miss something. Don’t forget. Don’t lose focus. Don’t mess up.

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And it doesn’t ever really stop.

The bears slow their pace, the sleuth (good gracious) might thin a bit, some of the bears hopefully gone.

 

But are they? Are they really gone?

Even when the only bears still around seem to be mostly tamed, mostly controlled, there’s that sickening sense that you’re being watched from the bushes, that another bear could leap out at any moment and start the wild pace all over again.

 

And that’s my story.

Evie’s story? Hopefully she’ll be able to tell more of it as she gets older. Hopefully she can help me share our collective stories together.

But I can share my side.

The frantic marathon to keep her with us because our life wouldn’t be the same without her. She’s worth any amount of exhaustion and bear fighting.

She’s worth all of it.

And really, fighting that sleuth of bears (I took the time to google, so I’m using it as much as possible) has forced me to become a bear, too.

A Mama Bear (but just one, though I have had to become a sleuth, too. Oh man, this really couldn’t have turned out better if I had planned it.)

 

But becoming a Mama Bear? That’s my story.

Special Needs Parenting

*Like I said, this is my story and that’s the kind of special needs parenting I have experience with.

It’s Been a While

Two and a half years.

Wow.

Sorry about that.

Sort of.

Not really.

I mean, sorry I disappeared on everyone for so long, but I needed it.

Four years ago, we were still in the midst of trying to figure out Evie’s bowel issues.

Three years ago, we were prepping for her Wish Trip as she continued to improve after we removed the discovered bowel defect earlier in the year.

Two years ago, we were crashing hard, no longer able to coast off the relief of Evie doing well, our PTSD demanding to be dealt with, and our bodies struggling to recover from such prolonged stress.

One year ago, we felt like we were finally starting to come out of the fog, only to have a hospitalization that sent us mentally and emotionally back again.

And writing here was just too hard.

Because I didn’t want to process everything we’d gone through. It was hard enough to do that in counseling, let alone baring it to the world.

But we’re making progress. It’s slow and we have a lot of setbacks, but the calm stretches out a bit longer in between.

And Evie is doing so amazingly well that she’s almost unrecognizable from that teeny tiny struggling little toddler.

She’s SEVEN now! She’s HUGE! She’s talking and is starting to read! She’s in gymnastics! It’s honestly just completely unbelievable how far she’s come.

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But she’s older now and I’m not sure how much to share anymore.

But I still want to write here.

We’ve learned a lot over the years and we’re still learning more all the time. We don’t have it all figured out, but we can share some of the lessons learned, some of the tricks accumulated, some of the perspectives acquired.

I don’t know how often I’ll write. I don’t have a plan of what I’ll even write about.

Stuff, I guess.

Special needs parenting stuff.

Maybe some regular parenting stuff.

Maybe odd and weird topics that I get slightly obsessive about. Because I do that. Often.

So we’ll see where this goes.

Could be fun.

Grateful for the Catastrophic

Two years ago, we were in the hospital as Evie struggled with an intussusception (where the bowel telescopes inside itself and gets stuck). It was a hellish time full of fear and frustration and trauma that led to months of progressively worse issues.

And I’m grateful for it.IMG_20140717_095700969

Not in the happy way, but in the “it all worked out in the end even though it was horrible” way.

Because the bowel defect was already there causing problems. It limited the amount of food she could take in, it kept her malnourished by not letting her body absorb nutrients properly, and it messed with her heart rhythm. Eventually those problems would have required more extreme intervention. And all of our solutions would have been worthless. No one ever suspected a bowel defect was the real source of all of those problems.

But then it turned catastrophic. It demanded it be found. It demanded it be fixed.

And fortunately, we found it and we fixed it.

But we wouldn’t have if it hadn’t tried to take her life. We would have continued on, managing issues that were becoming increasingly unmanageable. We would have watched Evie stay small and prayed that the heart issues wouldn’t worsen.

But that didn’t happen. Not because it got better, but because it got significantly worse.

Same with her breathing. If she would have kept crawling along with getting each breath, we likely wouldn’t have trached. We would have thought she was doing so well and managed in other ways. But we didn’t. Her breathing issues turned catastrophic and a trach became an absolute necessity.

So we got to see just how great she really could do. How beautiful her eyes are when they’re not filled with fear that the next breath won’t come.

And catastrophic is what landed us at Cincinnati Children’s Hospital. If the scarring in her airway had only been slight, hadn’t required the best doctors in the world, we never would have traveled 10 hours away for her care. But she did and we went and it made all the difference in the world for her.

But we’ve always come out on the other side of each catastrophe. We’ve been able to do what needed to be done IN TIME. And that’s my continued prayer. That each catastrophe will give us enough time. Evie’s bowel defect gave us nearly 10 months of going from bad to worse. It threatened her life slowly enough for us to test and test and test and finally do surgery to find and fix it.

We’re still recovering, though. Even though we made it through and even though Evie is doing amazingly well, those two things don’t negate the horrors we witnessed or the 10 months of feeling helpless to save our child. That level of stress for so long is simply not something you can just bounce back from. Having her still here doesn’t erase the late night conversations discussing the perceived inevitability of losing our little girl. It doesn’t erase having to spend 10 months shutting down our emotions and distancing ourselves from our own child because we knew if we broke down, we couldn’t do what needed to be done to save her. It doesn’t erase the fact that we bought a puppy in the middle of it because we wanted our older daughter to have that comfort if she lost her sister. It doesn’t take away the flashbacks or the panic attacks or the deep realization that we could have lost her so easily. That we still could lose her. That we’ll never be safe.

We’re grateful for those catastrophes, we are, but it’ll take some time for us to process it all, to breathe again. We were all deeply wounded and only now are we started to peel back the hastily placed bandages to assess the damage and figure out how to heal. We’ll get there.

And that all sounds so doom and gloom and we’re NOT feeling that way. We’re thoroughly enjoying this new phase of getting out together as a family and doing so many normal things. I think that will go a long way towards healing and potentially preparing for the next catastrophe.

Hopefully it’s a slow brewing one again.

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Evie’s Wish Trip: Universal Studios Part Two

Yep, I dropped the ball on finishing up Evie’s Wish Trip posts.  That’s life. But anyway, we headed back to Universal Studios and Islands of Adventure on Friday, our last day at the parks. The parks were definitely crazier than on Wednesday because the Harry Potter Celebration was going on. The crowds made for VERY interesting people watching, though. People had some extremely elaborate costumes! I wish I had taken more pictures of THAT!

We hit up the Dr. Seuss stuff first since we didn’t go there on Wednesday. We started with The Cat in the Hat ride, but it was in the dark and jerked around and Evie didn’t like it. But she spotted the carousel afterwards and rode that a bunch of times. She also enjoyed the High in the Sky Trolley Ride and meeting the Dr. Seuss characters.

Universal Studios8We headed up towards the Harry Potter stuff to see what was going on, but grabbed some kabobs first which were VERY tasty.  The crowds definitely thickened as we got up there and I was very grateful for our special access to skip the long lines. We wanted to eat over at the Leaky Cauldron for lunch, though, so we took the Hogwarts Express over to Diagon Alley. The restaurant wasn’t too crowded yet and the food was very good.  Ty and I each took turns taking Aleyna on the Gringott’s ride again and she enjoyed it a lot more this time.  We walked down through Universal Studios and Ty and Aleyna tried out the Despicable Me ride to see if it was something Evie would like. The both agreed she wouldn’t like it so we moved on.

Universal Studios9At this point, we started wondering where on earth we could find Dora the Explorer and friends. We’d seen her in the parade on Wednesday, but nowhere else. Suddenly we heard music and saw her float out in the street doing a little performance! Evie was SO excited! One of the staff members saw us watching and when the little show was done, grabbed us and put us right at the front of the lines to get pictures with all the characters. It was so amazing for Evie. Dora signed ‘I love you’ which got big smiles from Evie and then she pointed out that SHE had a backpack just like Evie! Pretty special.

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These were the special moments with characters that made this trip so wonderful. They were all just wonderful. Universal Studios11Evie and Aleyna also got some special attention from the lovely ladies dressed as flowers and they were so incredibly sweet.

Universal Studios12Next we swung over to the Woody Woodpecker ride that Evie liked so much on Wednesday. Oh my. She loved it!

I posted this video before, but it’s just so fun to watch! We wandered back up to the Hogwarts Express to ride back to Islands of Adventure. And here’s where Ty and I officially earned our Parents of the Year Award. I give you Exhibits A-D:

Universal Studios14Yep. Aleyna was TERRIFIED (Evie was sitting in her stroller just out of frame, completely uninterested) and as you can see, I was the picture of motherly concern and sympathy. It was genuinely scary, though. He made scary sounds and lunged at her. I didn’t really want to get very close either!

After thoroughly traumatizing our daughter, we wandered down to the Marvel Comics area. We ran into these amazing guys on stilts right outside that area and they were just the best. They had us laughing so hard the whole time and both girls adored them!

Universal Studios13Evie then started asking for the ‘train’ again, though, so we then walked back over to Universal Studios to ride the Woody Woodpecker ride some more. I think we went on it 6 or 8 times just over and over with Evie giggling away.  Everyone was getting tired then so we caught the end of the parade and then headed back to Give Kids the World.

We got dinner and while we were eating, an entire group of ballerinas came over to the table to invite the girls to their show over in the castle. My two little dancers quickly finished eating so they could go to the show. Because of how scheduling at the village went and the fact that most families were still at the parks, the girls got a private show and plenty of attention afterwards.

GKTW Photos10The ballerinas eventually had to head home, so we popped over to the Princesses and Pirates Party and it was BY FAR the best party of the week. All of the volunteers completely committed to their various characters. The mermaids, princesses, pirates, and knights were just phenomenal.

The knights and pirates who froze when Aleyna would use her freezing powers on them.

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The mermaids who made fishy faces with the girls.

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The princesses who danced and twirled with Evie and made her feel so special.

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We laughed so hard and had so much fun. We also learned that we should watch out for Aleyna. Upon learning that the knights were after the pirates, she immediately sided with the pirates and helped them escape. She’s trouble, that one.

We partied quite a ways into the night, but then finally headed back to our villa where we ordered pizza and stayed up way too late until Evie crashed for the night. And then the rest of us crashed.

P1020081And that was our last day at the parks! I’ll try to do a quick little post about our last day there just hanging out at the Give Kids the World for the day. I love that place.

Evie’s Wish Trip: Hollywood Studios

Hollywood Studios was the one park where we felt we needed to get there as early as possible. Aleyna really wanted to do the Jedi Training they have for kids, but sign up is first come first serve. We headed to the line first thing and got her signed up and then went over for her to ride Star Tours. Evie was still waking up a bit, so she wasn’t keen on doing anything quite yet. From there we went to the Frozen show. Evie was a bit overwhelmed, but she peeked up at everyone. Unfortunately, they had some smoke effects and, being in the front row, we were suddenly surrounded by smoke. We took Evie off the side, but then THAT side had smoke when Elsa appeared, so we went back to the middle. And then everywhere had smoke for the big finale, so I just rushed her out. I have no idea if it was dangerous for her, but that’s not something I want to risk. On the way out, I ran into someone who works in Safety and shared my concerns. He assured me they would pass that on. That’s what I love about Disney. They just want to do everything possible to make it a great experience for everyone.  After that, we walked over to Muppets 3D. Evie was NOT a fan even though she generally likes the Muppets, so I ducked out a bit early from that with her.

Hollywood Studios5Since The Muppets wasn’t exactly a hit, we wanted to do something that we knew Evie would love. Buzz and Woody for the win! Oh man, this girl has the best expressions EVER.

Hollywood Studios1Aleyna was supposed to have the Jedi training next, but because of the rain, it was canceled. She did get a personal meet and greet with Darth Vader, though, which was exciting for her!  I’m so proud we’ve passed on our love of Star Wars to her.

Hollywood Studios6Evie and I walked over to the Disney Junior show and waited for Ty and Aleyna to catch up with us again. One of the Cast Members spotted us and pulled us over to meet Doc McStuffins before the show, though! How neat! Both girls LOVE watching her show, especially since it’s doctor stuff that they’re so familiar with. We went into the show next and Evie LOVED this one. This one of the few that I had her watch on YouTube before going and with how well it went, I wish I had shown her EVERY show to prepare her. Afterwards we ran over to meet Sofia the First who is a favorite of both girls, too.

Hollywood Studios7We ran through the rain to Voyage of the Little Mermaid next which I have NO pictures of, but both girls enjoyed it. Since the Star Wars Launch Bay was right there, we popped in there to see if we could meet some characters. The line was a bit longer than we could handle with it being already WAY past lunch time, but the wonderful Cast Members again grabbed us and took us right to the front of the line. We got to meet both Chewbacca and Darth Vader. 1) I love tall people/wookies/sith lords and 2) I am such a nerd.  Darth Vader was so fun with his stern warnings that if we join the Empire and betray them, we would regret it.  Ty worked VERY hard to keep a straight face!

Hollywood Studios3Fun side story: Later in the week, we met a really neat volunteer at Give Kids the World and chatted with her for a while. We gave her a thank you card before we left and said goodbye. Later, we ran into her again and she said that her best friend has one of our cards, too! Her friend works with Darth Vader at Hollywood Studios! She showed us her Instagram post about it where she commented how much she loves her job and how much that simple thank you card meant to her. THAT is precisely WHY we did them. I was just so touched.

We went into the ABC Commissary to grab some food from there and then thought we’d let Aleyna hit some of the thrill rides. Ty and Aleyna went on Rock’n’Roller Coaster first and then she and I went. This was when I realized I can never trust Aleyna on anything. Ha! I asked her if the ride went upside down since I had my phone in my pocket. She said she wasn’t sure and couldn’t remember, but she didn’t think it did. LIAR! I spent the entire ride digging my elbow into my hip trying to keep my phone in my pocket as we went upside down repeatedly! When we got off, I asked her why she didn’t tell me! “Well, I wanted you to be surprised!!!!” Gaaaahhhhh!!!!

The rain really picked up at this point, so we ducked under an awning and chatted with one of the photographers who grabbed some pictures of the girls. It seemed like it was probably time to head out, but Aleyna REALLY wanted to ride Tower of Terror first, so I sent her and Ty off to do that. Amazing that she hated Haunted Mansion, but LOVED Tower of Terror! Fortunately, the rain let up a bit again and Evie wanted to jump in the puddles some more. She quickly discovered that the manholes held the most water and was quickly soaked, but loving it. I may have begged Aleyna to ride Rock’n’Roller Coaster again at that point, but this time WITHOUT my phone! So much more fun that time! The rain started up again, though, and we ended up running out to the van in a complete downpour. We were all soaked!

Hollywood Studios4Back at Give Kids the World, we grabbed dinner fairly early in the evening. Since there weren’t many other families there yet, we rounded up as many of the volunteers as we could and took some group photos with them. Such amazing people who give of their time so freely. The Christmas party was that night, too, so the girls FINALLY got to meet Santa! Since Christmas falls in the middle of sickness season, we’ve never risked a trip to meet Santa. It was amazing to get to do that at Give Kids the World. Both girls each got to choose a present as well, though Evie trying to manipulate her way into getting two gifts. Stinker. We got everyone showered and ready for bed and let Evie watch a show to calm down. Within a few minutes she was out cold. Sweet girl. She had such a great time meeting characters, seeing shows, and jumping in puddles.

GKTW Photos9Again, such a good day. We all just had so much fun both at Hollywood Studios and Give Kids the World!

Evie’s Wish Trip: Universal Studios Part One

To give Evie a break after two days at Disney parks, we used our first day of Universal Studios tickets on Wednesday. We also were expecting some nasty storms that day and decided that if we were just going to get caught sitting around somewhere, we might as well do it in a place serving butterbeer. Since our second day at Universal (Friday) would coincide with the Harry Potter Celebration, we also wanted to see all the Harry Potter stuff on Wednesday to avoid the crowds.

I tell ya what, Wednesday was the absolute PERFECT day to be at Universal Studios and Islands of Adventure.  There was NO ONE there. We couldn’t believe how empty it was. The fear of storms must have scared off most people, but it only drizzled most of the day. They took our picture when we first got there. I have no idea what Aleyna is doing.

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So first up was the Jurassic Park ride in Islands of Adventure. This was Aleyna’s #1 priority here, so we wanted to hit it before the possible storms rolled in. She was NOT happy about getting wet, but absolutely loved the ride. That picture of them on the ride is one of my favorites. It’s absolutely hilarious.

Jurassic ParkNext we wandered over to Hogsmeade to grab some lunch at the Three Broomsticks. Fish and chips, butterbeer, and actual beer. I’m a Harry Potter fan and had just introduced Aleyna to the first book and movie so this was all pretty exciting for me, but Ty actually loved it, too, because it had the feeling of being at a great little pub. And butterbeer. Ohmygoodness. How is that so good?????

After eating, we went over to ride Harry Potter and the Forbidden Journey. Because we had the stroller, we had to go a different way to get up to the ride and it was pretty neat getting to see inside the Hogwarts castle. I’m a nerd. I know. Unfortunately, the ride was so much scarier than I’d anticipated. I thought I’d done my research to make sure it would be fine for Aleyna, but I spent most of the ride trying to cover her eyes and telling her it would be over soon. Poor thing. I wish I had gotten the picture from that, though. I’m sure it would have been pretty funny.

They did have a great little rollercoaster called Flight of the Hippogriff outside the castle, though, and Aleyna had so much fun riding that one. We thought it’d be way too fast and scary for Evie, but after seeing how she fell in love with the Woody Woodpecker rollercoaster, I’m wishing we’d given it a shot. She seems so fragile to us still and it’s hard to think about putting her on a wild roller coaster!

While both girls chilled for a bit, Ty went on the Dragon Challenge roller coaster and had a great time! The girls and I just wandered around and looked at the train they had for pictures and then we all caught the Hogwarts Express to ride over to Universal Studios. Evie was SO excited to get to ride on a train!

HogsmeadeOne of the gentlemen we’d struck up a conversation with in Hogsmeade suggested we get ice cream at Florean Fortescue’s over at in the Diagon Alley Harry Potter world over at Universal Studios. They have a wide selection of unusual flavors and since Evie LOVES ice cream, that was something we had to do.  After ice cream, I managed to convince Aleyna to go on the Escape from Gringotts ride.  She basically made me look like The World’s Worst Mother. This ride is significantly less scary than the Hogwarts ride, but she was in tears before we even got on. In the end, she DID enjoy it and was only really scared by one part. She rode it a few other times on Friday, so she wasn’t REALLY traumatized.

We left the Harry Potter world and walked over to the Men in Black ride for Ty and Aleyna to ride. By this point the drizzle had picked up, but this made Evie VERY happy. She insisted on getting out of the stroller to help push so she could jump in all the puddles. I had to chuckle as I watched all the people in their ponchos and carrying umbrellas, trying so hard not to get wet, but there was my medically fragile child jumping in puddles and having the time of her life. I loved getting to see her enjoy the world around her. And bonus: Evie’s hair gets really curly when it’s damp, so it kicked her cuteness up to the next level.

Curly Hair in the RainEvie seemed in the right mood and her energy was up, so we decided to try a few things for her next. First up was the Woody Woodpecker ride. It took a little convincing, but Evie finally agreed to do it. Once. She liked it, but then signed that she was ‘all done’ and that was that. We were excited she enjoyed it, though!

Woody Woodpecker 1Right next to this ride was the Barney show. Evie loves him. Why do kids love him? This was a partial hit. On the one hand, Evie was in total sensory overload. It’s dark, then there’s lights, it’s loud. It’s a lot going on. But she also LOVED getting to see Barney. She spent the entire show with her head on my lap, peeking out at what was going on.  It was very very exciting to meet the dinosaur himself, though.

BarneyFrom there we rushed over to the Animal Actors show. We really thought Evie would enjoy this, but she just couldn’t take anymore sensory wise. At this point, I should have pulled out a device for her and allowed her the time she needed to tune out the world and get herself calmed down, but in the moment, I just thought she was being naughty. She and I watched the show from the side, but then afterwards they let the girls have a personal meet and greet with one of the dogs. He was such a sweetheart and Evie liked petting and hugging him.

Animal ActorsAfter some more puddle jumping, we finally got the hint from Evie and handed over the iPad. It was just what she needed. I’m sure it looked like bad parenting, but for a kid that has led a life in fairly quiet environments (especially with the hearing loss), she was getting so overwhelmed. Once she had the iPad in her hands, she could focus on JUST that and tune out the world enough for her to calm down and reset. While she chilled, we took turns taking Aleyna on Transformers and waited for the parade to start. Aleyna loved that ride so so much. It really was a fun one. And you can see how crowded it was for the parade. I mean, we could hardly find a spot. Even the staff were amazed at how empty the park was. It was just crazy. And it was PERFECT for us.

Transformers and ParadeAt this point the need for more butterbeer kicked in and we went back to catch the Hogwarts Express back over to Islands of Adventure. Again, the train was VERY exciting for the girls. And it’s a different ‘ride’ going each direction, so that was especially fun. Ty went into the Three Broomsticks to order drinks, but it was so empty we all went in and grabbed a table. Again, total perfection. We ordered a frozen butterbeer this time, too, and that was the CLEAR winner. Oh my. Amazing. It was just such a nice ending to the day. It was drizzling, Evie was relaxing, and we just sat in there chatting and having some drinks. That’s my kind of evening.

Three BroomsticksWe finally left and started making our way back to the front of the park. Aleyna wanted to go on the Spiderman ride quickly, though, so we did that first.

And that was that. We drove back to Give Kids the World and ordered some pizza to our villa and just relaxed before bed. I was so stressed about this day as I saw the weather forecast, but everything worked together to make for such a relaxing and fun day for everyone. And it was nice to know that we’d have another day to explore more on Friday so there wasn’t as much pressure to do and see everything all at once. Really one of my favorite days, though I think I’m saying that about each day.

Evie’s Wish Trip: Epcot

After our first day at Magic Kingdom, it was a bit more difficult to get both girls up and out the door the next morning. Especially Evie. She kept trying to get back under the covers. We grabbed breakfast at Give Kids the World and then drove over to Epcot.

Epcot Family

After attempting a family photo, we hit the Epcot Character Spot that has Mickey, Goofy, and Minnie. This was so very special. Usually they don’t allow pictures with multiple characters (it just takes too much time and they want as many people as possible to be able to see them!), but they stopped everything for a bit and allowed some pictures with all three!

Mickey, Minnie, and GoofyGot a great family photo, too!

Family Photo

Baymax was also at Epcot. Evie was pretty scared at first (he’s huge!), but once Daddy lifted her up, she warmed up to him pretty quickly. When we went to leave, he followed us and wanted fist bumps. It was so incredibly cute!

BaymaxAt this point we realized it was time for Evie’s extra special wish: her princess meal at Akershus Royal Banquet Hall! Unfortunately, we also realized it was across the park and we had less time than we’d realized. So Ty and I got a nice run into the day. The girls LOVED this special meal. They got to meet so many princesses and go on a few parades around the restaurant.

Akershus EpcotWe walked around Epcot’s World Showcase a little, but knew that Jasmine and Aladdin were supposed to be in Morocco. We wound our way through the narrow little streets when a Cast Member stopped us and asked if we were looking for Jasmine and Aladdin. He ushered us to a little room  and the girls got to meet them right away. Both of them were so very sweet and I was impressed how calm Jasmine stayed when Evie had a bit of a coughing fit while they were chatting. She just waited for Ty and I to deal with it and then went straight back into chatting and hugs.

Jasmine and AladdinWe wandered back to the American section of World Showcase and were able to catch one of the shows by Voices of Liberty. So so talented. This was also the point of the day where I just couldn’t keep the tears back. A year ago from that week, we were dealing with Evie’s first GI bleed where she lost 40% of her blood. To be sitting there with her, listening to such beautiful and moving music was almost too much.

Aleyna wanted to give them thank you cards, so she ran over as they were leaving and we followed behind. We ended up with a special chance to just chat with them and thank them for such a beautiful performance.

Voices of LibertyWe wandered a bit more and came to France at precisely the right moment to catch the Serveur Amusant performance. These guys are just stellar.

I think part of the magic of Disney is that you have so many little moments of just absolute magic and joy and smiles. Everywhere you turn there’s something else to see and do and experience. This act was certainly one of my top moments for the day and I’m glad we were able to thank them afterwards and get some great pictures with the girls. I’m trying to remember what transpired that led to one of the guys holding Aleyna’s ice cream, but it sure made for some funny shots.

Serveur AmusantSpeaking of ice cream, I think we lived off breakfast and ice cream for several days. Evie loves to taste foods and asked for ice cream a bunch of times. So of course we got ice cream a bunch of times.

Next we set out in search of Winnie the Pooh and Tigger. We could see where they were supposed to be on the map, but it took a while to find them. They’re just in tiny little spot with no signs anywhere. Evie was over the moon once we found them, though!

Pooh and TiggerEvie was pretty exhausted by this point so we thought we’d check out one of the Wish lounges. This is the Siemens VIP lounge in Spaceship Earth (the big ball) and Wish families can use it. It was amazing and made us feel beyond special. We were given a code and went in this little door where a computer greeted us. We entered the code and then it opened another door which led to an elevator which led up to a lounge with a secretary. They had drinks, bathrooms, a charging station, and giant touch screens to play around with. One of them allowed you to change the color of the lights in the floor! Then when we were rested, they escorted us to a backdoor entrance to the ride where we literally went down some stairs, through a little door and could go straight on. The lounge has meeting rooms and such, too, which we weren’t allowed in (especially since a meeting was going on), but I guess the CEO of Siemens said they wanted to give access to Wish families. Just amazing.

Wish LoungeAfter riding Spaceship Earth (which broke down for a bit, but Evie handled it very well), we wanted to let Aleyna go on a few rides while Evie chilled some more. While Ty and Aleyna went on Test Track, Evie and I found a spot to rest. I chatted with Evie a bit using sign language and the man next to me asked if I was signing. Turns out his daughter also has hearing loss! I had such a wonderful time chatting with him and then his wife when she came back from a ride with their other daughter. There’s nothing so wonderful as connecting with other special needs families ‘out in the wild’! There’s just an instantaneous connection that allows you to chat and laugh like you’ve been friends for years. If you two are reading this, thank you for the wonderful conversation!

Test Track

Aleyna and Ty also went on Mission: SPACE, but neither of them particularly liked it. Actually, Aleyna hated it. But I took her on Test Track again and that brightened her back up.

From there we wandered back over to World Showcase. Unfortunately, Evie was pretty much done for the day and the crowds seemed to be a bit worse (still nothing compared to busy season, but we’re particularly crowd averse). Evie saw Daisy, though, so we jumped in the short line to see her. The Cast Members then sent us over to see Donald. I didn’t realize Evie loved both characters so much, but she was just beyond excited to see them!

Daisy and DonaldAnd that was when we called it a day. As much as I would have loved to stay to explore World Showcase and watch the fireworks, Evie was exhausted. We promised Aleyna the chance to swim back at Give Kids the World and that made her anxious to leave as well. We tried to grab one last family photo, but Evie was NOT happy about it. Meh. That’s alright. It’s real life. Kids aren’t always happy, but Evie did pretty darn well considering her sheltered existence. And she still looks cute. AND Tinkerbell made an appearance!

Epcot8I think Epcot may have been my favorite park. It’s one that I would have loved to spend days and days at, just exploring the World Showcase, trying foods, and hanging out.  We really had such a good day there. It didn’t go perfectly, but there were so many wonderful moments to blur out the more stressful times. So grateful we could all experience it together.

 

 

Disney World Wish Trip Tips

I wanted to compile a list of tips for those who are planning a Wish Trip to Disney World. These are either things we did and were happy we did or things we wish we had done.  One of my friends has a great tips post as well, so check out her advice. We found it very helpful in our planning. I’ll end up repeating some of her advice, but she goes into more detail about the logistics of everything than I’m going to do in this post.

  • Give out thank you cards
    • This is absolutely my number one tip. We just really wanted everyone to know how grateful we were for their attention to Evie and making Thank You Cardsour trip so special. Everyone at Give Kids the World, Disney World, and Universal Studios was just fantastic and this seemed the best way to express our thanks. They don’t have to be anything fancy, just a way to say thank you. We were very touched by the responses when we gave them out. I want all of these places to continue LOVING seeing Wish Families. Any time we were ushered to the front of the line or someone was helpful or just kind, we gave them a card. We made sure to give them to the photographers and handlers at character meet Giving Chewy a Thank Youand greets, but I’m still kicking myself for not giving more to the characters themselves or leaving an extra one for them. I was just caught up in watching the girls interact with them, we didn’t think of it until we got our Disney ‘sea legs’ of sorts. Now, I did ones for both Disney and Universal, but that’s because I craft when I’m stressed and I was MASSIVELY stressed for this trip. I also put the blog address on the back so people could stay connected to Evie if they wanted and the CHARGE Syndrome Foundation website to just spread a bit of awareness.
  • Wear your Make a Wish buttons and/or shirts
    • This is how people will know your child is a Wish Kid.Wish Shirts at Universal StudiosWe found wearing our buttons at Disney was enough since we also had the Genie Pass (a special pass for Wish Kids), but Ty and I wore our buttons AND shirts at Universal since their special pass isn’t as obvious.
  • Things to buy ahead of time
    • Charging Battery: This is just a big rechargeable battery that allows you to charge phones or devices on the go. We blew through our phone batteries pretty quickly with taking pictures and such, so this was very helpful. We have this one, but there are a lot of options out there.Ponchos on Stroller
    • Self Seal Laminating Pouches: I found these at Walmart and used it on our Genie Pass. If the pass gets wet, the dates can come off and cause some problems, so we just stuck it in that pouch and it made all the difference on those rainy days we had.
    • Lanyards: Give Kids the World gave us one, but if you want a special one or more than one, pick up some before you go. We kept our tickets, Memory Maker card, parking passes, etc. in plastic pouches on them so they were handy at all times.
    • Ponchos: Every Disney tips post I read suggested buying some ponchos to take along so you weren’t stuck buying them AT Disney. These were the most recommended so that’s what I bought and I’m so glad I did! I just stuck a few in our stroller and pulled them out to cover the stroller or us when we needed them.Autographs!
    • Autograph Book: Either make one or buy one. My friend recommended the Junior Encyclopedia of Animated Characters and having it spiral bound (I just took it to a copy center to have that done). I did just that and the girls LOVED it. It must be a pretty popular idea because when we met Snow White and I was hunting for her page, she calmly said, “I believe I’m on page 120.” And she was exactly right!
  • Start walking BEFORE you go
    • Ty and I averaged 10-12 miles EACH day we were there. I was so glad we had started biking and walking more before we went because I think we handled it pretty well overall. Buy yourself some good walking shoes, too. These are not days for flip flops or the like.
  • Print and laminate good mapsLaminated maps
    • If characters are your focus (or even if they’re not), Kenny the Pirate has the best maps for the Disney World parks. It shows you exactly where the various characters are located so you can plan accordingly. His Character Locator was also extremely helpful. I pulled it up constantly on my phone to see what times I could find various characters or show times. It really helped me plan out our day.
    • I got my Universal Studios maps from Undercover Tourist. You can find the Universal Studios map here and the Islands of Adventure map here.
    • So, because I’m a hyper planner when stressed, I printed full size versions first and laminated them. I went through the various attractions, crossing off or circling on the map with a dry erase marker as I went. This helped me get a loose plan in mind of the various things we wanted to see and what our priorities were. And the girls loved getting to look them over as well.Small Laminated Maps
    • Then I printed half sheet versions, laminated, hole punched, and hung them on a key ring to put on the stroller. That way I had easy access to check where things were (or where WE were!). Laminating is obviously not absolutely necessary, but on those rainy days, I was sure glad they were protected!
  • Stroller as a Wheelchair Tag
    • If you have a lot of medical supplies and equipment, this is an absolute MUST. There was NO way that we could just leave all of Evie’s stuff outside of a ride while we got in line. This allowed the stroller to go right up to where we got on the ride and then I could just pull her suction bag out to take on the ride itself. I had this horrible fear that a ride would break down in the middle and we’d be separated from her emergency supplies. Since the rides DID in fact break down a few times (fortunately not for very long), I would recommend that you take whatever emergency supplies you would need ONTO the ride with you. Obviously, you can’t take everything, but for us, that meant her suction machine bag that has emergency trachs and such in it.
  • Use the Wish Lounges
    • There are places at Magic Kingdom and Epcot that you have access to as a Wish Family. Give Kids the World will tell you about them in their visitor manual. We went to the one atEpcot Wish LoungeMagic Kingdom when Evie was in a meltdown from overstimulation and it really was perfect for letting her calm down. At Epcot, we only hit one of the three (because I didn’t realize there were two others!!!!), but that one was absolutely amazing. And again, the perfect spot to just chill and calm down.
  • Utilize the photographersCinderella's Castle
    • You will get a photo card for both Disney World and Universal Studios, so make sure you USE them! I wish that we would have taken the time to get more family photos, but it was always an afterthought instead of a priority.
  • Let your kid use devices to calm if needed
    • So, for the first two days, I didn’t let Evie have any devices. It’s Disney World! You can’t just stare at the iPad!!!!! That was wrong of me and led to the meltdowns of those days. Evie has spent most of her life in fairly quiet environments and Disney is loud with tons of people and bright lights! She just couldn’t handle it. Once I realized what she needed, the days went MUCH smoother. SheChill Time was happier, she participated MORE, and everyone else felt calmer as well. I wish I had realized it sooner. So don’t do what I did. If your kid gets overwhelmed easily (or even NOT easily), make sure you take that into account and give them something to calm down. Evie needed the iPad to allow her to focus on JUST that and tune out everything else for a while. Then she was ready to get back out there and try new things.
  • Have a chill day for your Wish Child
    • If your Wish Child is younger or gets tired easily, try to take a day where they can relax a bit more. For us, these were our Universal days. We did two Disney days, then a Universal day, then Disney, then Universal in our five days of parks. After two days at Disney, Evie just needed a day where she could hang out and not be expected to do much. There was still plenty for her to do at Universal, so we hit those things first, but once she was tired, we just let her rest. We took that time to hit some thrill rides and drink butterbeer.
  • Don’t forget the activities at Give Kids the World
    • They have SO much fun stuff going on at the village, so make sure you check the schedule! Seriously, so.much.fun. Don’t miss out!Medieval TimesGKTW also has tickets available to other things in the area, too, so look into that. We got discounted tickets to Medieval times (loved it!) and free tickets to Kennedy Space Center.
  • Extend your trip if you can
    • This obviously isn’t possible for everyone, but if you can, think about extending your trip in both directions. We drove and got to Orlando the day before we could check into GKTW. We were then able to go over in the morning and have an entire day exploring the Village even ifGKTW Villaour Villa wasn’t ready quite yet. We also stayed an extra day in town so we could have our last day to hang out at GKTW again. It meant we had so much more time to be at the Village and just relax and enjoy ourselves instead of our first and last days being used for traveling to and from Orlando.

Those are just some very basic tips. Make sure you read through the Village Guide for GKTW before you go as that will have some very helpful information. Try to have a loose plan for where you want to go on which days and what you want to see at each park, but know that you likely won’t get to do EVERYTHING. And that’s okay. I think because this trip is a once in a lifetime thing, there’s a lot of pressure to make it practically perfect in every way, but you can’t. You’re going to forget things and miss things and wish you’d done xyz differently. Try to go with the flow (something we as Special Needs parents are both good and bad at!) and just enjoy yourself. Aim for the priorities and consider everything else as bonus fun.

You’re going to have a such great time and make so many wonderful memories! Really really.

It will be amazing!Family Photo