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  • Writer's pictureJenny

Dahlia Update - Signs, signs, and more signs! And a lighter brighter Mommy.

It's been a bit.

I've been faking it much of the time. Going through the motions, but feeling dark, sad, hopeless deep down. Having some very bad thoughts. I know I touched on this in previous posts, feeling the desire to escape. Feeling like I didn't want to progress with the life challenges placed in front of me.

Something has clicked over for me in the past few weeks, thank goodness, and maybe it's due to the therapy I'm in and other changes, but I feel so much better. I feel like I can and will be happy now and in the future, even with the challenges in my life. Much of this time, I was scared to have a vulnerable wide-open heart and get very close to Dahlia. I thought maybe that would help me in the long run with seeing her fade away and losing her. If I didn't get too attached, it wouldn't be so bad in the end for me. So unfair to her, and selfish of me. And to be honest, the connection was just not there as much, from age 1 to 2. Around this time is when a parent starts to really get to know her child. Words, silly actions, many expressions and all sorts of traits emerge. But as Dahlia living with BPAN limits her skills, it also subdued her expressions and communication, and it was hard to pick up on the essence of her personality and other traits. I couldn't (and often still can't) tell what's upsetting her, what's exciting her, what she wants to do, and I definitely very often don't know what she's thinking. But as she progresses and ages, we are seeing her express herself and her personality more and more, which is a delight and a true gift. And even without the emerging skills, I'm simply becoming more in tune with my daughter; seeing her eyes and reading the feelings behind them, the different types of noises she makes are becoming familiar and identifiable, and the way she looks at me can tell me a thousand words sometimes.

Life is so busy as usual. We now have a nanny who cares for her at home, therapists come to the house daily, and she goes to outside therapy as well.

Dahlia doesn't sleep the greatest, she's up a lot of the night bouncing and yapping away, but she does tend to nap pretty well in the afternoons.

She works so effing hard. Seeing her work for things that come naturally to other toddlers sucks. It takes so much practice, hand over hand work, repetition, to get her to attain a skill. Like I said, I have no more pressure on myself or her to do her best to catch up. New skills and achievements are celebrated greatly (read on for her latest wins), and make life easier for us and her, but not necessary, and not something I ever am hung up on any more.

Halloween was a delight for us, because by then Dahl was fully walking. She walks very unstably, and you have to be close to her. She can't walk on uneven surfaces or really on steps, but having her able to walk to front doors and hold her pumpkin pail was a sight I treasured. She didn't understand the concept of accepting candy in her bucket yet, but she did try to walk right into everyone's houses, which was hilarious. Seeing her and Teddy walking side by side on the sidewalk made me cry a few times. You never know what you might get having BPAN, so every single positive thing is a huge gift and big surprise.

Dahlia now has six signs! Help, Eat, Drink, Book, All Done and More. The sign she uses the most is Eat, because she is our little pig. The other night, Teddy asked for Happy Meals, so I loaded them up and went to the drive through. While waiting at the window, Dahlia starts doing her "pay attention to me" whine, and I turn around to look at her, and she's motioning Eat, furiously. She knew we were at McDonald's and waiting for our food! I love it! (And maybe we shouldn't go to McDonald's so much.)

She motions for books all day long, books are her favorite pastime, and her current favorite song thanks to Grandma is "Five Little Monkeys". She pats her own head and even waves her pointer finger at the "Doctor says" part. She goes NUTS for the Wiggles, especially "Doctor Knickerbocker", she dances and squeals in delight.

She loves her brother so much, and seeing them play more and more together is the best thing. He chases her down the hallway and she screams and laughs and motions for "more". She's getting brave wanting to roughhouse with him, but with her low muscle tone she usually gets rocked and falls over, so we have to monitor that. Her standing is impeccable, and her walking is improving every day. She now bends over to pick things up if they are bigger items. She whines for a walk as soon as the nanny comes in every morning. She loves other kids, and during group therapy time she just stares in wonderment and smiles at all the kids around her. She loves to get tickled, and if you start tickling her, you'd better not stop, because you can't deny the sweet "more" sign.

I was absolutely dreading the holidays a month ago. Now I look forward to celebrating them with her, seeing her face light up at everything, spoiling her rotten. I try not to think too far ahead and am doing a good job of that as of late. Thanks for checking in!

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