My heart hurts tonight. We have waited for this trip for months. We have prepped Nathan and prepared as best we could. However, we have realized that this disease has stolen so much from him. It hasn’t even been a year since he was diagnosed, but it is like we are a year too late for this trip to mean something. I am hoping that once we get to the Make-A-Wish portion, it will change. The crowded places are just too much for him to handle, he can’t cope and he just melts down. We have had a hard time being among large groups of people. Guess what, you can’t quite avoid that here. We have been able to ride 2 rides since we arrived because we just can’t stay in one place.
We are taking it all at his pace and catering to his needs, but it was been hard to watch. Madison had been amazing on this trip. She is such a fantastic big sister, who very much wants her brother to have the trip of a lifetime and doing anything in her power to help. She has been a tremendous help to us.
We have had some good moments and met a few really nice people who have taken the time to understand Nathan’s story. When you take the time to understand people are kind and compassionate. Unfortunately, we aren’t able to talk with everyone we come in contact with, so I am not sure what they are left to think. I hate the idea that someone might think poorly of Nathan based on his behavior in a bad moment, but that is the reality.
We go to bed every night praying that the next day will be just a little better. I am surprised by the amount of patience we have all had. We have all done really well at not letting it get to us. We are clinging to the little moments of good. The sweet smiles, the hugs and kisses and the little giggles carry us through.
Please continue to pray for peace for Nathan. We want this trip to be good for him. Pray for all of us to have some amazing family time that we will remember forever.