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The Ties that Bind

This morning a friend of mine so thoughtfully sent me a blog about a special needs families’ bond . It made me think of all the things that I hold near and true to my heart about Noah and our bond as mother and son. I noticed that it’s the same as other families,despite diagnosis and family dynamics.
The first thing I tell a training nurse when we interview, is that we talk to Noah. He deserves the same dignity as a speaking person would. Let him know what you’re about to do to him. Repositioning, changing, dressing, administering meds…whatever.  Just make him aware of what you are doing to HIS body. Tell him a joke,read him a story or sing him a song. His favorites have always been Amazing Grace and Sweet Caroline..where he’d belt out…oh oh oh !! Talk to him because he is listening! He can’t verbally communicate but if you spend enough time with him, you can decipher his physical nuances. He can be very descriptive in that way. I’ve had people tell me that they would visit more if they knew he could tell that they were there. That saddens me to no end. He knows more than we can ever imagine. He can read our energy and feel what we are feeling just by us entering his room. Please don’t cry while you are with him,it’s always made him sad.
Another very important tip…Don’t stop asking me about him. Yes,Noah has his ups and downs and yes I might be sad and emotional at times..and who hasn’t ? But he’s my child. Who doesn’t like to be asked about their children? We all love to brag about their current accomplishments. Well so do I, and accomplished and overcome He has!!
Lastly, please don’t say that he’s better off not here. And YES..I’ve heard this many more times than I’d care to recall. He’s my pride and joy. I’m so proud that God allowed me the honor of being his mother here on earth. I know that I’ll have to give him back at some point, but I’ll cherish him now, as you cherish your own. God doesn’t make mistakes. Noah is here for a reason. And by the support that all of you give us everyday, I know that Noah has accomplished his mission!
– Christine Fernandes

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