Hi... this is Mum. Tammy Shah, stay at home Mum, protector of said preemie, self professed advocate extraordinaire. It is I who wrote this blog for those first years, and I told the story through Ethan's eyes because it made sense to me. But now? Well he has his own voice, and it's loud, He doesn't need me to blog his life through his eyes anymore, but I find that I need to blog his life through mine.
So much has happened in these 4 1/2 years. So many joys! So many achievements! So much frustration.... changes, maturing, back steps, diagnosis. So much. Let's start with the good which is that Ethan is healthy and happy! He is a thriving 9 1/2 year old who stands a massive 4'9" tall and weighs in at about 110 lbs. He's come so far from those tiny beginnings. He's a polite kiddo who I'm always happy to take places and to allow him to visit with his friends. I think we're doing this parenting thing alright. I always feel blessed to be his Mum. ALWAYS.
Today I was shopping for Easter... books. The child loves to read, so I was shopping books. I made my choices, I was happy about them and then I passed the section that I most avoid since this past fall. Fall was when the official Autism diagnosis came in. Fall was when it became real. Fall was when I started avoiding this section of the store. It was Fall. I borrowed a book from a wonderful supportive friend and I have skimmed it many times. I read some here and there.
It has struck me. I am a strong woman! I have lived through a lot and I'm secure walking in my shoes. But just today...looking at those books...I thought, am I strong enough for Autism? Ethan is, I know he is. He won't know any different and he will go about his life with his self professed advocate extraordinaire at his side. But when I try to pick a book, I feel tears prick my ears. I skim them and hone in on the word 'toddler'. My boy isn't a toddler, not even close. And I'm angry with myself for not paying better attention, for not doing the testing sooner. I'm mad at myself for having to navigate this at 9 instead of 7 or 5 or 3. The days march on and we haven't even talked with him yet about his diagnosis. I can't figure out the right time! Is Friday evening best so we can field questions through out the weekend?? Maybe Saturday AM over pancakes at iHop?? When? When do I confirm what he already feels, that he is a little different from the other kids in his class. Not bad different...just different. I think people may be rolling their eyes now, so hear me out. I have watched Ethan struggle since before he was even born. Those 5 weeks without any amniotic fluid to help him learn vital skills, those first days after birth when he was clinging to life, those 104 days in the NICU. Then how he struggled to learn how to move his body, to roll over at 15 months, crawl at 18, walk at 24. I was by his side the whole way transitioning from Early Intervention to preschool, and coping with the CP diagnosis. I witnessed his sadness when other kids are so much faster than him, and how each year there is some kid who bullies him. So Autism, to me, is just another thing he has to struggle with. And today...while I was shopping, I could only sigh and think to myself that it's just not fair.
But tomorrow is a new day.
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