mydisneyanytime
Mouseketeer
- Joined
- Nov 30, 2012
- Messages
- 324
We have finally gotten our dates for our Make A Wish trip. We are very excited as this has been a while in the making. As you can tell from the title, we are headed to Disneyland!!
Cast of Characters: Me (Disney is my happy place), DH (Disney is NOT his happy place), DD (age 7), and DS (age 7 - the WISH child)
Our family: DH and I have been married almost 20 years! It is hard to believe that we have been married for so long. After being married for almost 12 years we decided that we wanted to have children. We tried the normal routes and then some but couldn't seem to make our family grow. Then... on a very special day in October about 7 years ago we got a very special phone call. "Are you ready to be parents?" We were going to be parents to a little cutie on the other side of the world!! We packed our bags and made our way there to finally hold her!
Fast forward a few years and we felt that it was time to add another blessing to our family. After many papers, phone calls, meetings, and months of planning we got another special phone call. "Are you ready to be parents again?". Of course the answer was yes. So after more packing and planning we once again made our way to the other side of the world to hold our bugaboo.
Once home we started to recognize a few issues (well, we noticed them while we were gone but with one toddler and a newly adopted one and being on the go about 24/7 it was hard to really think about them). He was barely walking, wasn't talking, didn't cry, and was extremely delayed.
We were lucky (if you call this lucky) in the fact that my husband had lost his job about a year earlier so he was able to stay home with the kids and work with our son. We got him into the county school preschool and began looking at the other issues that we had noticed.
Finally, sitting in an IEP meeting to help with his needs, a very dear physical therapist said "I think that we may be looking at muscular dystrophy". Wow, what parent wants to hear that!
Well, once again, fast forward a year or so and here we are at the present. I am watching my dear boy play toy story on the Kinect and say "I do it again". Lots of blessings come our way.
It isn't easy. He has Duchenne's muscular dystrophy which is a progressive form of muscular dystrophy that unless something comes along soon will leave him basically motionless as it destroys the muscles at a young age. He may live to be in his teens or early twenties but we can hope for more. He is walking and talking but has speech issues and learning issues. We have behavior concerns that come with the diagnosis and with the delays. We have doctor clinic visits in another state and steroids that he takes daily.
There is lots of good. He is an awesome kid and I love the hugs and kisses. He has been in a clinical trial and we are hoping (who wouldn't) that good things will come from it. He is coming along in school and has lots of supports in place. He has an awesome big sister, that although it is hard for her at times, loves and takes care of her little brother.
We as a family love Disney. We went to Hong Kong Disney just days after adopting Tycen and have visited WDW at many times during the year. A few months ago we were headed to his therapeutic horseback riding and he didn't want to go. So from the back seat I hear..."mommy, turn left, go Disney". I told him that we couldn't and that it was too far away but that we would soon. He then, a little louder, said "turn left, go Disney".
We had been approached by our wonderful doctors at clinic about a make a wish trip but we wanted to wait until Tycen could verbalize what he wanted to do. Well, just a few short months ago, after seeing the new CarsLand on tv, he said that he wanted to go. The funny thing is that I don't think that he realized that it was part of a Disney park. He will be so excited when he sees the castle and the characters!!
We were approved for a WISH some time ago as we had Panera Bread choose him for one of their fundraisers. We were so excited and felt so lucky to be chosen. We had a special dinner and even got to thank them during that time.
Now, just today, we have our dates. We are going to California from July 5 - 10 and then we will be extending our trip until the 13. I figure that we will never be in CA again so I want to see what we can!!
If you are still reading, thanks. I hate to be long winded but I wanted to let people know our experience and why we are being granted a wish. I also hope to write a trip report so others going to Disneyland will be able to learn from what we did!!
We are very excited and can't wait to share it with everyone here!!
I will post a picture as soon as I can figure out how to do it!!!
Cast of Characters: Me (Disney is my happy place), DH (Disney is NOT his happy place), DD (age 7), and DS (age 7 - the WISH child)
Our family: DH and I have been married almost 20 years! It is hard to believe that we have been married for so long. After being married for almost 12 years we decided that we wanted to have children. We tried the normal routes and then some but couldn't seem to make our family grow. Then... on a very special day in October about 7 years ago we got a very special phone call. "Are you ready to be parents?" We were going to be parents to a little cutie on the other side of the world!! We packed our bags and made our way there to finally hold her!
Fast forward a few years and we felt that it was time to add another blessing to our family. After many papers, phone calls, meetings, and months of planning we got another special phone call. "Are you ready to be parents again?". Of course the answer was yes. So after more packing and planning we once again made our way to the other side of the world to hold our bugaboo.
Once home we started to recognize a few issues (well, we noticed them while we were gone but with one toddler and a newly adopted one and being on the go about 24/7 it was hard to really think about them). He was barely walking, wasn't talking, didn't cry, and was extremely delayed.
We were lucky (if you call this lucky) in the fact that my husband had lost his job about a year earlier so he was able to stay home with the kids and work with our son. We got him into the county school preschool and began looking at the other issues that we had noticed.
Finally, sitting in an IEP meeting to help with his needs, a very dear physical therapist said "I think that we may be looking at muscular dystrophy". Wow, what parent wants to hear that!
Well, once again, fast forward a year or so and here we are at the present. I am watching my dear boy play toy story on the Kinect and say "I do it again". Lots of blessings come our way.
It isn't easy. He has Duchenne's muscular dystrophy which is a progressive form of muscular dystrophy that unless something comes along soon will leave him basically motionless as it destroys the muscles at a young age. He may live to be in his teens or early twenties but we can hope for more. He is walking and talking but has speech issues and learning issues. We have behavior concerns that come with the diagnosis and with the delays. We have doctor clinic visits in another state and steroids that he takes daily.
There is lots of good. He is an awesome kid and I love the hugs and kisses. He has been in a clinical trial and we are hoping (who wouldn't) that good things will come from it. He is coming along in school and has lots of supports in place. He has an awesome big sister, that although it is hard for her at times, loves and takes care of her little brother.
We as a family love Disney. We went to Hong Kong Disney just days after adopting Tycen and have visited WDW at many times during the year. A few months ago we were headed to his therapeutic horseback riding and he didn't want to go. So from the back seat I hear..."mommy, turn left, go Disney". I told him that we couldn't and that it was too far away but that we would soon. He then, a little louder, said "turn left, go Disney".
We had been approached by our wonderful doctors at clinic about a make a wish trip but we wanted to wait until Tycen could verbalize what he wanted to do. Well, just a few short months ago, after seeing the new CarsLand on tv, he said that he wanted to go. The funny thing is that I don't think that he realized that it was part of a Disney park. He will be so excited when he sees the castle and the characters!!
We were approved for a WISH some time ago as we had Panera Bread choose him for one of their fundraisers. We were so excited and felt so lucky to be chosen. We had a special dinner and even got to thank them during that time.
Now, just today, we have our dates. We are going to California from July 5 - 10 and then we will be extending our trip until the 13. I figure that we will never be in CA again so I want to see what we can!!
If you are still reading, thanks. I hate to be long winded but I wanted to let people know our experience and why we are being granted a wish. I also hope to write a trip report so others going to Disneyland will be able to learn from what we did!!
We are very excited and can't wait to share it with everyone here!!
I will post a picture as soon as I can figure out how to do it!!!
Have fun planning! 
So happy Tycen is getting his wish! Carsland sounds so cool. I love Cars the movie, Larry the Cable Guy lives in the same city as me. I have met him a few times and think Mater is awesome! Can't wait to hear more about your planning!
