Monday, March 4, 2013


If you follow us on other social networks, then you probably already know what I am going to say. Kate Middleton can rock a hat. I kid, but that's true. What I'm actually referring to is the amazing progress we are seeing in R2.

If you haven't followed the whole story, I'll sum up. Our special needs son was diagnosed with a neurodegenerative disease a few months ago, after an extended period of losing functions, losing his ability to sit or stand without support, losing control of much of his muscular system and eventually refusing even to be spoon fed. In February his situation was so severe that our medical support recommended we call in end-of-life specialists and set up hospice care for the home. I can't even go back to the agony of those weeks. Every morning I would walk into his room, trying to brace myself in case he had left us during the night. He was so deeply tired and in many ways, we felt like he had given up on this life, had been given a glimpse of heaven and was ready to leave us.

We tried our best to release him, to explain the situation to the little kids and to tell him that we'd be okay, that he could go if he needed to go. We braced ourselves for weeks or months. And then something changed. It's spiritual, it's physical, it's all of it. He started trying again.

We went from forcing him to drink smoothies from squeeze packs to using scarfs and wrap blankets to hold him in an upright position so we could spoonfeed him avocados and bananas, with another band holding his head up since he could no longer do that, to now, sitting independently in a chair, eating anything we feed him and even experimenting with feeding himself a bite or two with much prompting.  He is walking, he is sitting up all of the time, he is so happy.

The most exciting thing to me is the vocalizing. R2 talked as a baby and then lost that function gradually over the years, about 5 years ago he stopped entirely. This week he has started trying to speak again. He echoes some words, (his first words were "thank you") but a lot of what he is doing is just trying his voice, moans, giggles and whispers. And he is goofy almost all the time. It has been so long since he was happy that I forgot his real personality. Isn't that crazy? Anyway, he is "making jokes", vocalizing these long tones and then laughing. Brynn says he sounds like the whale language from Finding Nemo. :D

I, despite loving Jesus deeply and being raised in church and Christian school (or maybe because of those things), am always hesitant to use churchy language or "Christianese" on my blog, or in my life. I can't get away from the miraculous elements here, though, y'all. I don't know what tomorrow will look like, I don't know what any of this means for the long term, but I know we're seeing miracles today. All I asked for was more time, and God is giving me back my son. It's so huge that I can't wrap my mind around it. I can't even get super emotional yet because I am just trying to process what is happening. To go from fully releasing him to the Lord to realizing that he might have a long life, and be even better and stronger than before, that's a lot to work through. I am so thankful, so amazed, so deeply grateful. Thank you all for continuing to pray for him, for us.

Here's a little video R1 and R2 made:


  1. This brings me such joy! Praise God for His great love and compassion.

  2. WOW!!!!! Chills all over and PRAISING JESUS for more time!!!! For amazing miracles!!!!!!! No other words except THANK YOU LORD!!!!!

  3. so amazing! i am so happy for you :) Hallelujah!


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