afraid to loose this

July 30, 2018

Things with Noah have been unexpectedly amazing. Like really, really great. The hard part of the Nemechek Protocol that we are doing, was hard. Like brutal, brink of insanity hard. But the storm has slowly subsided, and the last couple weeks I've spent my days with a whole new kid. 

 

And don't get me wrong, it's not all peachy. Every time I tickle Noah and pull back his hair to give him forehead kisses, there is the faintest of a bruise.. and I am quickly reminded of how it got there. That's still a hard one. But, the more Noah learns to communicate effectively, the less frustrations he will have. And improving Noah's communication is my top priority. Honestly, Noah is blowing my mind how quickly he is picking up his 'talker.' It's incredible. He is so stinkin smart, & that's not really a surprise to me, not anymore. 

But the kid who could never give me five seconds to show him how to do a puzzle, is now giving me just that. Maybe not what I fully want, but it's something, it's a start. Yesterday he sat on my lap and we did watercolor painting  for three minutes. Not long at all, but a month ago he would have never even tried this with me. I did have to ask him over twenty times, & wait about another twenty minutes for him to actually come sit with me.. but he did it.

 

And because of all this goodness, this almost seemingly easier life, I have the most anxiety I've ever had. Because, I'm afraid one day we're going to wake up, & it's all going to be gone. Everything we've gained, all the wins.. will have just disappeared. And one can only fully understand regressions unless you've experienced it. It's not just a 'bad day' where your kid doesn't want to cooperate. It's completely loosing skills, emotions & stability. And it doesn't just last an afternoon, it can last weeks. 

This is the longest we've been afloat. The longest stability we've ever had.. & I'm scared to death it's all going to come crashing down. This is the life changing worries that come with raising a little one with special needs. The never ending rollercoaster. And it's really, really tough that as a parent, you almost feel you can't fully enjoy the happy, not entirely at least,  because in the back of your mind.. you know what could be around the corner. And you pray. God do you pray every night to please don't take it away. Please don't let him start kicking me again with diaper changes. Please don't take his willingness to sit with me away. Please let him keep looking at me with such adoration & wonder.

 

I know myself.. and the longer we keep afloat, the lesser the worries will be. And I might actually start to believe that this is our new norm. And I'll get there, sooner than later because this literally has been the best time we've spent together. But I don't know if I will ever truly be able to let out that whole breath.. the one that you hold so tight with all your overwhelming thoughts, fears & worries. And that's because.. well, autism. 

 

 

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