No Apologies…

This past week, we surprised the kids with a trip to Disneyworld. I will make no apologies, no excuses and would go toe to toe with anyone who questioned my judgment in taking the kids out of school for a few days. My children are still young, they still believe that anything is possible, they still dream BIG. And we try to show them that there is so much fun to have in life.
We come home to a Neurology appointment this week that has been looming over our heads for awhile and I think that this trip was our “calm before the storm” moment. We needed this time to go be carefree and have fun as a family. We have a lot of big events coming up in the next couple months with Nathan’s health that we are really trying to live each moment to the fullest. We do NOT know what the future holds for him and we want to make each day count.

We woke the kids up early Tuesday morning and told them at breakfast that they would be on a plane in a couple of hours headed to Disneyworld. Nathan squealed with excitement, while Madison very quietly processed what we were telling her. She did not believe us until we showed her that her bags were already packed. Then it was off to the airport. The Captain let Nathan sit in the cockpit and in his chair and took pictures with him.
Once we got to the hotel, we got to go see the Pirate themed room that we had booked. Lately, Nathan has been very interested in Pirates, so that was really fun for him to see that he was sleeping in a pirate ship. We got to hit all the parks, Animal Kingdom, Magic Kingdom, Hollywood Studios and Epcot. It is wonderful because Jay’s sister lives there, so we get to spend all our time with Madison and Nathan’s Aunt and Uncle and Cousin. It really makes our time there more special.
We met a wonderful gentleman who fought in World War 2 and told the kids stories of his time there. He told Nathan all about how to be a gentleman. He told us how he hopes to live to be 135 so he could go in the book of records.
We met another wonderful woman who has a 10 year old adopted, non-verbal Autistic brother and she was very drawn to Nathan. On her own, she went and got him a Mickey hat, a pirate sword and other cool things for him to have. She told us we made her whole week. Her brother lives in Tennessee and she had been really missing him, so she enjoyed spending some time with Nathan.
We watched the fireworks at Magic Kingdom and while I don’t know what Nathan actually saw, it was dark and he was able to tell us when he saw the light in the sky. We rode all the rides, most of them several times. They would let us ride a couple times in a row since they knew Nathan loved it. Both of the kids’ favorite was Rockin Rollercoaster. It is a great ride that shoots you 0-60 in 2 seconds and blasts music in your ears the whole time. They would get off and beg to go again. It was so wonderful to see the smiles on their faces.
We are very fortunate to be able to make these memories with our children. I know that they will last for a lifetime. That has always been very important to us, that the kids have lots of memories to draw on forever.

Coming up this week is Nathan’s Neurology appointment. I will let you know what we find out there. We have a follow up eye appointment in March and then the final DNA result appointment will be on April 1. That is the one that should hopefully finally provide the answers we have been long awaiting. As always, we will keep everyone posted.

Thank you for continuing to keep our family in your thoughts and prayers. They are very much needed and we feel them. We are blessed to have such a wonderful community that is supporting us.

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