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.

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.

HAPPY HALLOWEEN!!

State Fair 2015

Our visit to the Fair this year was better than ever. I said last year in my fair post that I had felt more relaxed than in past years (since having kids) and this year I felt the same way, even more. The weather was fantastic, both girls were happy the entire time, and it was just all around good fun.

There was one thing about our visit this year that was VERY different. Just after entering the fair park, my uncle turned to me and said, "Why don't we start with the Midway this year?" I almost fell over! Our tradition since I was a very little girl has always been to leave the games and rides until the end of the day. First we did animals, then crafts, car buildings, markets, etc, and only then (after mucho anticipation) did we head to the Midway.

My first reaction was like no way! that's not what we do! And then all I had to do was look at my four year old, who was already basically sprinting to the rides, and I was like well, why not? So after getting a few snacks, we headed to the kids' train ride that Avery had enjoyed last year.  Maddie had like it too, of course, but this was the only ride we had found that was safe and enjoyable for her sister. We were so glad that she seemed even more excited to try it this year. It started the whole visit off so well.

Soon after, we found these swing rides that I just knew Avery would love, but the seats were too low and her legs were too long. I was so disappointed! Maddie did fit well and enjoyed herself.

I was so pleased to find another swing ride for bigger kids a little further into the Midway. It went just high enough to thrill, not scare Avery. And I could ride right next to her! SO HAPPY!!

I know it's hard to see our faces here, but we are both smiling and laughing, big time! We rode that ride over and over again :). Maddie and daddy rode too. Here is a selfie-- did you know Bub the hub took selfies?? Me either! You can see me and Avery in the background too.

I think Maddie must have rode 10 rides total. She is a daredevil, just like her mommy. She rode cars, bikes and airplanes, and even a roller coaster multiple times. This is how Maddie cheered when she measured tall enough to ride something she wanted.

And the joy on her face during each ride.

After spending some time in the Midway, we headed over to find a Fletcher's corny dog, which is another good tradition.

yum!!

Avery took a nap in her stroller while Maddie enjoyed the Little Hands Farm that we visit every year. 

Big Tex Maddie

Farmer Maddie

We took our annual family pic in front of Big Tex, which is always a feat. We are missing Aunt Christine in this one, but I think we are all actually smiling/kind of looking. This year we were a smaller group than usual already, missing Grandaddy, Uncle Drew and Shannon, who weren't able to make it. We missed them a lot.

I tried so hard to get a pic of me and both girls. Getting Avery to look at cameras is challenging to say the least. At least we've got Maddie pose smile and Avery half smile!

Got a good one of all the girlies together too. 

The girls wore matching dresses with their names monogrammed because why not?

At the end of the day, we headed back to the Midway and did a few more rides and played just a couple of games. The first one was a bust but on the second one, Bub the hub made an impossible basketball shot on the first try and won a prize Maddie had been begging for.

Her very own huge unicorn, as seen in "Despicable Me." The way her face lit up at her daddy winning that unicorn is not something I will never forget. We felt pretty satisfied after that and didn't need to play any more games! We did pick up one more thing on the way out.

"Birthday cake" funnel cake. OMG.

We arrived home exhausted and happy. This little one had us tuck in unicorn with her that night, as well as her other menagerie of friends. I had to laugh.

Maddie at Four

I did an interview with Maddie last year when she turned three and I want to keep the tradition! She kept asking me for more questions this year, it was so cute. So I accommodated, of course.

What is your favorite color? "purple" Glad it changed from "black," which is what she'd been saying all this past summer :x

What are your favorite things to eat? "pancakes" Maddie Brynn can put pancakes away like nobody's business.

What are your favorite things to wear? "my fourth of july dress" This is an adorable stars and stripes dress that she inherited from her sister. I searched high and low for a pic of her in it, but couldn't find anything. I did find one of three year old Avery though--

Eagle eyed readers might spy a certain large baby bump on the side of this pic... Maddie was only about a month from delivery!

What do you love to do? "go to the park" 

What is your favorite song? "Frozen" Which song? "Let it go" Sigh.

What is your favorite day? "Sunday" Why? "cuz its the day I get to have a sleepover with Grammy" She had a holiday from school this past Monday, so she stayed overnight with her Grammy. Fresh in her mind! 

What is your favorite toy? "my pony sets" She got a bunch of My Little Pony playsets for her birthday.

What is your favorite animal? "A horse" Do you sense a theme?

Where do you like to go eat? "To Chick-fil-a" 

What's your favorite thing to do with momma? "Snuggle together" Momma's too!!

What's your favorite thing to do with dada? "Play a game" Board game fanatics, those two

What do you like to draw? "A picture of you and me hugging" She has in fact been drawing these lately and they are stinkin' adorable.

What's your favorite book? "Fun Fair" That's a tiny book about Mickey Mouse and the gang going to the fair. It's the reason Maddie calls the State Fair, "State Fun Fair" and so now do we all.

What makes you happy? "Swinging on the swing" She has discovered how to pump her legs and go so high on our backyard swing that it makes mommy's heart beat fast sometimes...

What makes you sad? "When I don't do things I wanna do....when someone hurts me" Awww

What makes you laugh? "When mommy makes silly faces" I am pretty good.

What are you really good at? "Swinging" She's honest.

What are you not very good at? "I'm not very good at doing a backflip." This raises a few questions in my mind.

What do you want to be when you grow up? "I want to be a teacher." I had never heard her say this! Love it.

Where is your favorite place to go? "To someone's party." We've been to a ton of birthday parties lately. What can I say? The girl loves some cake. And favor bags.

What is love? "Love is when someone says I love you and they say awww." Not sure but I'll take it!

ADDED QUESTIONS:

What is your favorite thing that you've learned at school? "Trying to be good and not have any time outs." Sounds good to me!

What is your favorite thing about your sister? "Helping her when she has a seizure. And when she was about to fall down, I would catch her." Almost lost it here.

What do you dream about? "That I had long, long hair. Like Rapunzel." This doesn't surprise me.

Who is your best friend? "Grace and Annabel" Twin girls in her new preK class that she enjoys playing with.

What is your favorite sport? "Golf" This is a bit of a head scratcher. Has she ever even played mini golf? No. 


There are a bunch of words that Maddie still mispronounces in the most adorable way, that I do not want to forget. A few of those being: "granilla" for granola, "agonal" for diagonal, and "zzizzers" for scissors.

I am also so happy with how well she is doing with spelling her name by herself, unprompted.

writing in the sand

THIS GIRL! This girl is special. I have so much fun with her. Her bright smile can perk me up in a nanosecond. She is SO brave and social and loving and thoughtful and smart and I could go on and on and on. I love you, Maddie Brynn.