How we Disney our way around Disneyland.

We decided last minute to surprise the kids with a trip to Disneyland since both Milo and Matilda had their surgeries and we wanted something happy for them, especially before Matilda’s next surgery.

We started the conversation at dinner with what we should do for this long weekend and ideas were thrown and my husband suggested going to Disneyland. The kids did not have much reaction so I said the same thing and the kids did not care much for it and went on suugesting local fun we could do. My husband and I gave each other glances of this is totally not what we expected and I had to say – “kids, we ARE going to Disneyland this weekend, really. We want to surprise you and that is what we are doing this weekend.” There was a pause and then Milo’s mouth was wide open and then I looked over at Matilda who had her head down and started whimpering and I said what is wrong? Does your ear hurt? She looked up and with tears coming down her face and in her crying voice, she said, “I am just so happy that is why I am crying.” I was so happy when I heard her say that! Milo’s reaction was screams of excitement; and Owen realizes what was really happening and started cheering. The kids had to ask us several more times to confirm that it is really happening and that we are going to Disneyland.

Matilda’s reaction is what you see on social media and I do not know how people capture those moments on their camera because if I had the phone pointing at her when we said it, I feel like it would ruin the real reaction. But her reaction was truly priceless and so social media on point.

Ever since we were told by Milo’s O&M (Orientation and Mobility) teacher to ask for the special disability pass for Milo, we have done so in each visit. The pass does not allow us to pass the general line, it’s more like a virtual line. We receive a return time for attractions based on the current wait time from one of the Disney crew. But with the DAS pass (Disney‘s Disability Access Service), we can enter the ride in the accessible entrance where it helps ease Milo’s anxiety since he does not have to worry about the crowd rushing to get on and off the ride in the dark and he has a wider space to maneuver with his cane. As he gets older, it also gives him a sense of independence where he can feel like he can do it on his own like everyone and not having us to hold him and rushing him through the crowds. We still have to give him verbal cue to find his way around and into the ride but it is with much more ease. But I have noticed that with each visit, Disney relation makes it a little more difficult for us to get the pass. Milo questions each time why I have to explain in such details as to why it helps him since in his eyes, he sees the need to use it especially when we are not trying to abuse it at all. I know it is one of those topic that is hard since there are people that do abuse it which makes Disney to be more suspicious each time. Tough call.

As the kids get older I realize it is harder and more challenging for them to work their way into everyday life because sometimes we all forget of the possibility of invisible condition that someone might have. For example, when we eat at the hotel it is always buffet style. We walk through with Milo on where everything is and what has peanut (he is highly allergic to peanut) and then we let him go and get his own meal. Many occasions I have seen adults (not aware that Milo is legally blind and has no peripheral vision) glare at him because Milo would be too close to him/her or Milo would turn in the direction where the other person might be going.

It is tougher to navigate across the park at night with his cane so Milo is usually with me or my husband and we would talk him through of what is coming up and telling him the fun things around us. If my husband is with Milo, then I would be pushing Owen in the stroller and have Matilda with me. It also gets tough with Matilda too since with with the crowd and being outdoor, it is hard for her to hear us (Matilda is hearing impaired). She gets distracted with all the visual appeal and she is not always holding my hand and we have to make sure she is close by otherwise it is difficult for her to hear us calling her. We make it work and we have this unsaid plan of what and where each person should be. But as the kids get older and want more independence, I worry about what they will do when they are out with their peers.

With each trip (we tend to go at least once a year), Milo is finally starting to enjoy Disneyland since he is finally getting used to what to expect in each ride and being less anxious since he knows what to expect. When we do visit, we try our best to go during low season (mid January) but it is getting harder to take time off from school since the kids are getting older. With the new Star Wars land opened, it’s probably much harder to find an off season.

Milo’s turn

Milo decided to join the fun with Matilda and surprised us with having to have a last minute procedure after the holiday. He went in for a procedural check up with his retina specialist and it was discovered that he had about 150 bleeding blood vessels. It was an out patient procedure and it was only about 3 hours. Milo was excited because he was able to try out the new facility as Matilda.

The procedure went well and Milo woke up and had 2 of those yummie popsicles before being released.

Happy New (Y)Ear!

Matilda had the first part of her rib cartilage reconstructive surgery and she stayed in the hospital for 5 days after. The surgery went well after a good 12 hours and her surgeons were very happy with the result. Here are some pictures that the surgeons took of the ribs they took from her to build her a new ear.

You can tell what an amazing work the surgeons did and some skills! In the last two pictures you can see the 2 tubes that are below her ear that helped her drain the fluid. It was not comfortable at all and she did not like it when she noticed them.

Matilda woke up pretty happy and it was not until hours later when she realized she had all these tubes coming from her ear and her rib wound that she shut down and was feeling extremely sad.

She had a tough time when we were at the hospital once she saw all the tubing and how restricted she was with mobility. She refused to look at herself in the mirror and pretty much refused to talk or even eat. When the nurses asked her about her pain level she was always nodding that she is fine (I think it was just easy to do so than saying anything else). The doctor gave her goals and one of them was to make sure she moves her neck around especially the side she had surgery because kids tend to avoid it which then causes stiffness. Matilda did just that. She was afraid to move her new ear side. I had to constantly remind her of our goal which is to go home after 5 days and we do not want to stay longer, so after 2 days she finally got better of moving around but still with lots of prompting. Her mood was still very down and I was definitely feeling frustrated. I asked for a physical therapist to work with her and the doctor instructed the nurse to give her higher dose of pain medication versus the low dose she has been getting. Matilda was also very sleep deprived since every 2-3 hours a nurse would come in and check her vital and administer her medication (and when the medication is done it delivers a loud beeping sound that does not stop until a nurse comes back in). No one was getting any good sleep. On the third night, I requested that she needs at least 6 straight hours of no interruption and we worked it out so that she had her medicine as late as we could so she can sleep better.

Matilda had received gifts before the surgery so that she could open them while she was there but Matilda refused to open any of them nor did she want anyone to visit. She wanted to do everything when she gets home.

It was a long and tough 5 days but she did it. I think it was hard because it is completely not what she had expected. But she did it and she was so brave and she can’t wait for Christmas. Our second part surgery is in 4 months and she will not have to stay in the hospital and just rest for 2 weeks at home.

Happy New (Y)ear!