Wednesday, November 25, 2015

Zoo Day

The girls and I had a really nice zoo day today. Both girls were off for Thanksgiving holiday, but Bub the hub was at work, so we decided to have a little girl fun. Taking both girls by myself on an excursion like this is not usually possible, but we had some help! We invited one of Avery's favorite teachers, Miss Maggie, to come along. Avery adores her and Maddie has a ton of fun with her too, so it was more like inviting a friend :).

I wish I could have gotten a pic of Maddie using the zoo map to help us navigate through the park. She was holding it upside down and is not able to read yet, but still quite insisted that she knew where to go! "I can do it mommy!" is what I hear constantly these days. 

She also insisted on my taking pics of her on all of the animal statues that she could find.

I'm not a super fan of the cheesy-head-tilt-smile pose that 
she's really into these days, but it's better than a frown I suppose!

Posing on these statues is not new. Lat year she wanted the same:

Oh how we've grown! 

Avery really seemed to enjoy the animals this visit. I'm not always sure how much she can see at a distance, but she smiled and laughed her way through the park. I think we all enjoyed the giraffes and elephants the most. Maddie enjoyed the reptile center a little more than I feel comfortable with....

All in all, a successful trip! As we were leaving, we just barely caught a ride on the zoo train, which I remember enjoying so much as a child. I was so thrilled that Avery sat next to me happy, giggling and talking for the entire ride, even the loud and bumpy parts. My little girl is really growing up. 

Here is a selfie of Maddie with our favorite sitter and wonderful overall person, Miss Maggie. I'm so thankful to have people like her in our lives, people who love and understand both of my very different daughters ♥ ♥ ♥ ♥ .

More on thankfulness in the next post!!!!


Wednesday, November 4, 2015

How's Avery?

Lately I've been thinking of all the unsaid words that pass through my mind when someone asks after Avery. Because there is never enough time to respond accurately to the person with the kind, well meaning question. And it's not to say that I do not want to be asked! I always appreciate the thought. I try to keep it short and sweet for you when meanwhile I could absolutely talk forever.

And I do, sometimes.... to my closest friends, and they know who they are. I can only imagine they are thinking, "what next?" because boy do the issues just keep rolling on when you have a child with so many challenges, who cannot communicate.

A special needs website that I follow asked a question the other day that made me think even more about this topic. What's one secret or truth you wish you could tell others about your experience with disability? One thing I would say is that it's really hard to be honest with friends and family about Avery. And I'm not talking about dishonesty, I'm saying it's really hard to paint a picture of what this is like for her and for us.

Sometimes I say "good" when I'd really like to share what a horrendous time she has sleeping through the night and how insanely frustrated she gets because we don't know what she wants or what hurts. Sometimes I want to share how horribly hard it's getting to lift and carry her; how difficult her special diet can be; how she head-hits whenever she is frustrated and for months it has been a huge problem that is only getting worse. 

When I respond with "she's hanging in there" sometimes it's because I've had to hold back tears multiples times a day, worried about her frequent seizures. I'd like to share how hard this is all to take one day at a time, even though I know that's the only way to survive.  

I could talk all day about how she hasn't been herself in months, but we can't pinpoint why. But I won't, because I don't want to scare the hell out of you with our list of worrisome details that most parents do not face every day. I don't say any of these things because it's a lot easier not to see the concern on your face and watch you struggle to respond.

The truth I wish people could understand is that I don't want to burden you with our problems, I don't want to have to ask for help and I really don't want to be pitied. So most of the time, I'm going to say "good."

I hope you understand that all of this and more flashes across my mind when you ask me about Avery. Please know that I really am thankful when you ask, even if I have a look on my face or something in my voice that might seem disconnected.

I also want you to know that your questions and thoughts about Avery mean the world to me. I always notice those friends and family that show me how deeply they care about her welfare by asking if I need help with her, or actually putting forethought and love into gifts for her. It makes a huge difference to us.

I wish I had a cute current Avery photo to go along with this post, but those have been very hard to come by lately. Instead I'll share one I came across the other day that put a huge smile on my face.


Sunday, November 1, 2015

Halloween 2015

Another fun Halloween went by! My beautiful Dorothy and Snow White both had a good time. Avery always enjoys dressing up, but it is Maddie who is in her element!  

We all went to our neighborhood Halloween gathering to visit with friends before trick or treating. Avery won the best costume prize for her age group! I think it was the adorable Toto in basket that cinched it :)

Afterwards, Avery went home with daddy to eat some dinner and Maddie started on her trick or treating right away. I wish I could have gotten some photos, but she was running at top speed as fast as those little legs could carry her, from one door to another with a group of little girl friends. Seriously, it was like a herd of wild pack animals! I did get this one pic when they paused briefly to visit a Halloween table.

One sweet moment that I really wished I could have gotten on camera was when Maddie ran up to the house of her PreK teacher, who lives in our neighborhood. Her teacher leaned down and opened her arms wide and Maddie ran straight into them for a big hug. They were both so thrilled to see each other. Made my heart happy. Earlier this week, Maddie had a costume parade at her school. All the kids lined up outside their classrooms to watch the the PreK and Kindergarten kids parade up and down the halls. Precious!

Here she is with her class

Back to Halloween night, Maddie and Bub the hub did 
some (very) last minute jack'o'lantern carving.

Maddie also did a lot of handing out candy at our door. I would say this is her favorite part by far. She ended up sitting in her little chair on the porch to greet everyone that came by. And when we were about to run out of candy and turn our porch light off, she took candy from her own basket to give out, just so she could enjoy it a little longer. 

I just adore her sweet, earnest heart.

And last but not least, we had thevery wonderful Nana help us out all night! She's the best, that Nana. Or should I say, Kitty Cat Nana, with smiley Avery and Maddie with a gob of candy in her mouth.


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