Thursday, August 1, 2013
Charge Syndrome
A few of Jordan's studies came back this week and several more will have results by the end of the Summer. The most recent result shows that Jordan did in fact have Charge syndrome, which means he may have not only been unable to hear, but he likely would have developed vision issues as well as potentially having limited feeling due to diminished functionality of his nervous system. While none of this makes his passing easy, it certainly helps to know that he is not only released from the pain he was feeling but from a lifetime of challenges that we had not even considered.
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It is remarkable to think that, with all of the diagnosed and undiagnosed issues, we enjoyed him on the Earth as long as we did. What a lot to have one little body take on...to think that with his pre-mortal agency,he was willing to come to our family and endure what he did for all of our sakes.
ReplyDeletei am so glad that you had the time to love on him for as long as you did. He is a precious boy! Love you all JaneWay Family! this is Rockelle just in case it posts as Cassidy!
ReplyDeleteOccasionally I do a search for "CHARGE Syndrome" to see if there are any families out there struggling with a new diagnosis. My daughter, Evie, has CHARGE and is 2 years old. I came across this post and wanted to say how deeply sorry I am that your little one has passed away. We will be praying for your family as you grieve. If you're interested, there is a facebook group for families that have lost a CHARGEr (as they're affectionately called). Here is the link if you'd like to talk with other families: https://www.facebook.com/groups/586647214685764/
ReplyDeleteAnd know that though most CHARGErs have hearing and vision loss, most of them make good use of what they have. If he responded to your face and your voice, then he probably saw you and heard you and was comforted.
Again, we'll be praying for your family.