Musings of a Marfan Mom

What a Week


This past week has been impossibly difficult. I’ve been trying to wrap my head around the fact that one of my best friends is no longer a phone call away. I miss her so much. Please keep her family and all of us who loved her in your thoughts, if you wouldn’t mind.

For those who did not see on Facebook, on Thursday I came home to find that someone had mailed us an iPad mini for Baby J. We have no idea who it is from. Whomever it is, I hope you know that we are appreciative beyond words, and if you want to come forward we’d love to thank you personally, but if not we respect that and just say thank you, thank you, thank you.

Here is a video of J using the LAMP: Words for Life app to communicate his pre-naptime desires.

We’re waiting on the case to come in, so J hasn’t been using the iPad on his own yet, but we have many practice sessions during the day. Yesterday morning he used it to tell me what he wanted for breakfast. He can tell me what articles of clothing he needs to get dressed, when he wants to watch TV, when it’s time for bed, that he has a dirty diaper, label body parts, and request to go to the “train station” (evidently that’s his name for his bed? Last night he said that, then ran to his room, jumped on his bed and made a train noise.). It’s really exciting!

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  1. People’s generosity is overwhelming. I do not find it surprising or unusual – instead I find that people everywhere want to help and all they want is some graciousness in return. J will benefit a great deal from this just as Y’s family will benefit from your thoughtfulness and the world benefitted from Y’s desire to connect with others and so forth. You are receiver and giver and that is good for M and J to watch –


  2. The surprise iPad mini, that is. Certainly not the loss of your friend. :( Sorry. I hit enter too soon.


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