Recently, we received a Fed Ex package from an old friend from High School. He had read my post months ago about wanting post cards from all over the world and he answered with abundance. He sent the most amazing package with envelopes from Canada, Spain, England, France , Australia and the Middle East. What was so unique about this package in particular was the ones from the Middle East. There were four handmade cards from a woman who had lived there for 20 years and a package with 8 hand painted bells in them. Her intent was for Nathan to be able to “see” these places through his other senses. For example, the cards were all 3 dimensional. One had a handmade rug on it, another had silver slippers on them, they were all made for him to feel them and imagine what it is like in Dubai. The bells served the same purpose, while extremely beautiful, he was to hear them. He was so intrigued with the bells. He sat for a while and listened to them. It was a priceless moment for me to watch. The notes that were sent with them had me in tears. These are people who do not know me, or my son, but took the time to go out of their way to do something special for my family.
While I tend to ask for postcards for Nathan, I also neglect to say what a tremendous impact this has had on Madison as well. She loves to get the mail (sometimes it is a fight who can get to the mailbox first:) and she loves to read the messages to Nathan. She gets just as much joy out of this as he does, sometimes maybe even more, as Nathan doesn’t comprehend what is happening with his eyes. When this package came, her eyes lit up and she spent the most time going through each and every one. A few days after we received the package she asked if she could talk to me. She was very serious and started the conversation off with “I know you are going to say no, but I want to ask anyway”. She wanted to know if she could take the package from the Middle East to school for show and tell. After talking about it we decided it would be ok and the rules around it. It’s not like I could just call up Dubai and ask for another one if something happened to one. I asked her what she was going to say, and she simply said, “I will tell them that these are the cards we got for my brother.” I realized I had not really told Madison exactly what was going on with Nathan’s eyes. She knows we go to a lot of appointments, and that we didn’t let him play basket ball this year because he has a really hard time seeing and that he is losing his vision, but we never really talked about it. So I explained to her about his Optic Atrophy and what that meant. I told her that Nathan’s eyes over the years have gotten worse, and that the Doctors do not know why and we don’t know if his vision will stay where it is or if he will go completely blind. There are no guarantees of anything, which is why I requested the postcards so many months ago. I wanted a guarantee that he could see the world in case one day he couldn’t. I pray that day doesn’t come, but if it does, he will have these memories.
So, off to school she went the next day and I am still not sure exactly what she said, but I did run into her teacher in the hall after school that day and she told me it was one of the best show and tell presentations that she has ever heard! Madison’s class adopted Nathan as an honorary 5th grader, which I thought was awesome. I was and am so impressed with my daughter. She has the heart of a giant and wants nothing more than to be accepted and for Nathan to be understood. I do not think her intent was to educated anyone on Nathan, but I think that is exactly what she did. Afterwards her teacher sent an email to the parents of the class asking the same thing I did, for postcards!! My Facebook page doubled in size, which amazed me. ( I never really think anyone looks at it:) We have already started to receive numerous post cards and some from his friends at school which he really gets a kick out of.
I have often wondered if Madison resents her brother and I know that is the furthest thing from the truth. She is his biggest fan and cheerleader. She encourages him in all things he tries to do and is the first one to stand up for him if she feels he is being wronged in any way. There are many times when Nathan is unreachable but somehow, she is able to reach him. She amazes me everyday.
I do ask for your prayers this week. Nathan has his quarterly appointment with the Ophthalmologist on Friday. That is when we will get a status on his eyes and if they have progressed anymore. I worry because we have noticed things that make us feel like he has lost more vision. I am not sure what we will do if we get bad news. I need him to see, he is only 8 and I am not ready for that to happen. I will never be ready, but he has so much life to live and things to see that it just can’t happen now. So for now, I ask that you pray for his eyes and that Friday will bring encouraging news.
In the meantime, thank you for your support, friendship, love and prayers. It means so much to us that our little man has touched so many of you, because he has sure touched our hearts!
Stacey
Nathan's Batten Battle 
What a wonderful event! No matter what happens…remember that God is bigger than everything and he will see Nathan through this journey of life! You are an amazing family and lucky to have each other….Blessing to all of you!
Prayers always to all of you.. I am so proud of Maddison she is a beautiful young lady. And you know my “date” has a hold of my heart like no other little boy!!! As always you wrote from the heart and your blog is beautiful!!!
Again you bring me to tears with your eloquent and moving account of your familys journey. Such courage and faith that I know gives your family the strength to face all the challenges and all the joys that come in to your life. Uncle Julius and I are so proud of you and Jay and especially Madison for being Nathans greatest cheerleaders in his struggles. I would love to have been there for Madisons show and tell, it must have been very moving to affect the hearts and minds of 5th graders who can sometimes be insensitive. Nathan does truly have a world village caring for him!!
Hello there. This is Deirdre. I am as touched by this posting, as you were reading the cards. As I sat on the 14 hour plane journey going to the US, I wrote those cards for Nathan, just knowing as a mother, what I would want to hear for my sons, if they were in that situation and knowing also what you as another mother might want. It was instinctive and it is beautiful to see how you wrote about this and to see the photo of the bells, all the way from a prescious little souq in Abu Dhabi. Your whole family seem beautiful and I am very happy also that your daughter was able to bring a little oreintal mystery to her school. I hope and pray one day that we will meet. Give each other the biggest hugs from me – your Irish friend in the desert…..mother, nurse and great admirer of special people like your family.