Wednesday, November 21, 2018

Happy 10th Blogaversary to Max and me


When I started this blog, Max was five. Originally I planned to call it To The Max. That name was taken, but it's exactly how I felt about Max's progress—even at that young age, he had surpassed all the bad, bad things we'd been told at his birth. Max was walking, saying some words and had just started spoon-feeding himself. He was bright, alert and full of life.

And yet, much of his future remained unknown. We had no idea if he'd ever learn to read or write or how he'd do in school. (Yes, yes and GREAT.) We certainly couldn't have imagined that at age 8, he'd be riding an adaptive bike. Or that eventually we'd be able to have full conversations with him. Or that he'd overcome his sensory issues and be psyched about going to movies, shows and restaurants. Or that he'd be able to drink out of a cup, navigate TV stations and be content to chill on his own. Or any of the little-yet-not-so-little cognitive gains he's made, like the fact that he gets sarcasm, knows exactly how to tease his siblings and is totally responsible about doing his homework. Or that one day, he'd be the best big brother

That's one of the biggest challenges of having a little one with special needs: not knowing what your child will be able to do and feeling consumed with anxiety. Our children are on their own timelines, of course—that's something we learn to accept in our own development as parents. We also find ways to make peace with the fact that our children may not do some things, and that is OK. 

I started this blog to process thoughts and feelings about being a special needs mom, to celebrate Max's wins (and cuteness!) and to share feedback on the challenges we all face. I wanted to help other parents going through a hard time, like I did after Max's birth, and make us feel less alone. And I was determined to show people Max's abilities and help stop the pity party for kids with disabilities. Along the way, I've spoken out against people who disrespect our children, fail to include them or otherwise dis them in the hopes of raising awareness and changing perceptions. 

As I write this, I'm feeling so grateful for all the good people I've connected with, including parents and adults with disabilities who've given me invaluable insights, guidance and perspective. Thank you for being a part of our journey. I'll be around for the indefinite future, unless Max decides he wants to take over. You never know. 

6 comments:

  1. Ellen, you probably know you are an inspiration! Thank you to you and Max and your blog! We wish you much happiness and success as we all grow and learn with you!

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  2. Happy Anniversary. Been with you since the beginning. It's hard not to feel a lil like we are family

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  3. I think I’ve read your blog since the beginning. My daughter’s diagnosis was January 2008! This summer she read a few of your “what is CP” posts so she would be better prepared for her 3-sentence summary to professionals or new junior high classmates about why she wears an AFO etc. Thank you!

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  4. Happy happy blogaversary to all of you. You've been such an inspiration over the years, and I'm thankful to have found you early on in our journey. You've done such a great job of moving awareness forward for our special kiddos, and I admire that so much. Our kids do not share their needs, but reading you, and having your blog in my life has helped me so much. My son Tucker is in a weird Middle World Place, where he's nine now and doesn't have a specific diagnosis, so I talk about him less and less but each time I feel alone, or that he's misunderstood, you're here. Thank you for that. Thank you for your dedication to blogging and sharing. XOXOX and happy thanksgiving to all of you! <3
    ALSO OMG Max has grown up and WOW.

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  5. Ellen!!! Mazel tov!!! You are such a positive voice and inspiration!!! ;-)

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  6. Ellen, thanks for sharing your journey (and for making it easier for others to share theirs). Wishing you, Max and your family much love this holiday season.

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Thanks for sharing!