Today was an interesting day, full of new wonders and amazement. I can honestly say we haven’t seen its like in years. It was peaceful, serene, calm, and dare I say pleasant? Some of it is magic, some progress, and some lessons learned. That was my intended topic but it took a different turn. One basically a Hannah word party.
Hannah is one of the coolest kids you’ll meet, brave, spunky, and the fairy queen of adventure. Even parasailing at 2 with nothing but calm. I especially love how she can get across more ideas with her face than anyone I know and the best part? She is her own person. Some of that comes from parenting and some the idea that one of the benefits of having a language disorder is that she doesn’t hear all of the times people say, “Oh you’re so brave!”(now be scared of that), or that little girls should act differently, or all those little things adults say to children that changes their view through fanciful or factual means. She goes to a school with under 25 other students 5-18 that are alike in the fact that they have complicated disabilities and part of the benefits mean there’s no peer pressure. There’s nothing to stand in her way to be her. Even if it’s parasailing at 2.
Part of her disability is to not understand or speak much of the language. If you think about it her first two years of communication were emotion, body language, & facial expressions. Her only way to communicate for years was through emotion, gestures, and manipulation. She is a natural at communicating without any language: The favorite of my memories in this category is when we were in a bank, she was maybe 17mo old and I had a deposit. She wandered around the client waiting area with a teller friend keeping an eye on her, after a minute my friend kept laughing. When I turned around the manager of the bank had 4 pillows in his arms putting them wherever the little girl told him to. At 16 months.
When Hanna was three years old, she wanted Legos. She already knew we weren’t going to say yes to walking over to much less buy these massive Lego boxes, that was Santa’s department. So she took us on a tour: this book is soft, yes. Nope! that’s too big. wow, look at that big puzzle. And then Bam! There we are, right in front of the big lego boxes. She had to use added manipulation because that was all she really had. She couldn’t wheedle us for it like other kids she hadn’t figured that out yet. She couldn’t say “Mommy, I want Legos” then, but she knows it now and its expanded: I want cookies, I want a robot, I want…” *sigh* at least now I know for sure what she’s asking without going over 3 coloring pages and quite a few sighs on her part.
In Hannah’s world, it is what it is; she likes it, or she doesn’t, on top of that she is usually a caring child, and definitely a mischievous little sprite but we can blame her Daddy for that. I’ve got the drama queen blame, thanks for sharing Dad. This kid has been through hell. 10 surgeries before 2 years old, 18 months of misdiagnosing audiologists saying she was fine. Two years of being in an abusive school and not being able to tell anyone about it. (I have eternal gratitude for her ‘boyfriend’ telling his mom all about it.) She had a dog give her 100 stitches in her face with a scar, that she can’t talk about except for pointing at it and saying “dog.” Add to that the daily reminders that she’s different when we’re out in the world, which I don’t know if it’s affecting her a lot or not, she can’t tell me. She doesn’t have any traditional way of processing the world with a parent or someone close to it. We have our own ideas that seem to work, and we work with her Dr.s to increase that kind of communication more.
So yes, that’s where my mind headed off to when I was attempting to say how lovely my day was, and I it was so different from others. So let me start by saying all a little of what I planned to. Every family member contributes to our successful days. For me, attention to my ability control over self win or lose, Miles making sure he exhales, and our daughter’s willingness to enjoy without going overboard. That energy and strength she has, she’s going to need it, the world is rough. If they find a way to fix all of this and Hannah wanted to, I will help her in a heartbeat. If she didn’t want to take the fix, I get it. I would understand knowing yourself in one way and not wanting it to disappear, whether or not it limits your functioning.
I am proud of my daughter and not just for her 100% performance today-ish -10 min the car over Goldfish….. She is a fantastic creature, I just hope someday every one sees it. For now, they can continue to adore her face as openly as they like.
Current Weight Track: 182.6 3lb down