What is Normal?

I admit that there are moments when doubt and fear creep into my  head and heart about my daughter’s future.

Will she be normal?

Ryan is the only one in the world with her particular chromosomal abnormality. Apparently, I have bad genes. Great.

She is almost ten and can’t talk. Years and years of speech therapy, but still no ability to form a sentence. She can utter few words. She can use a few signs.

As a family we function very well. We guess and decipher and encourage and learn and endure some melt downs as her world and her thoughts expand. But every once in a while I am able to step outside myself and feel how abnormal my normal is.

Sure, she went to four years of kindergarten. Not normal, but absolutely the right thing for her.

No, she is not in Special Education. She obviously qualifies, but my hubby and I don’t believe the system would invest in her; it would merely endure her.

All this is not normal. We are not a part of the typical crowd, we are not a part of the special ed crowd. We don’t fit in.

But, save a few moments filled with ridiculous and useless panic, we enjoy the journey…

Ryan Blog

Years ago my family began a tradition of going to Disneyland for Halloween.

In my opinion, the Christian Community–of which I am a proud and vocal member–is nutty about Halloween. The whole gather on the 31st of October, in costume, to collect candy, and call it any other name you want and declare you don’t celebrate Halloween is just not for me. And, truthfully, the small town I grew up in had many streets with no lights and obnoxious teenagers that would drive around and smash pumpkins all evening, so my initial thoughts about traditional Halloween are not fabulous. I wanted/needed/searched for a better third option, and Disney was it.

This year, unbeknownst to me, my hubby planned an entire trip to Disneyworld.

Two weeks.

Five different resorts.

Unbelievable.

We packed up and moved our tradition to Florida.

As is the normal routine, one of our first stops the evening we arrive is Downtown Disney to choose a costume. My teen was willing to dress up, but there really was not a great costume for her. (Note to self, a bit of planning and preparation would have been helpful.) Most of the searching was done by my peanut.

I lobbied heavily for this:

Minnie Ryan

But as precious as she was in that costume, and as much as she loved it, when we got into the dressing room she looked at me pleadingly, made her hand into a fist and tapped the wood bench with, “Knock, knock, knock, knock, knock…” which is her way of asking for FROZEN. (Cue the sound track: “Elsa? Do you want to build a snowman?”)

Ryan Anna 1

Ryan Anna 2

Ryan Anna 3

So my daughter, with unlimited options before her, wanted to be a princess from FROZEN for Halloween this year.

It doesn’t get any more “normal” than that.

8 thoughts on “What is Normal?

  • November 16, 2014 at 6:10 pm
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    Robin, I had no idea. We’ve only been “travel in the same general circles but never really connecting” friends. I’m so glad you guys had the Disney trip together. I think you’re just terrific and I like your normal. 😉

    Reply
  • November 17, 2014 at 12:54 pm
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    Robin – I love your normal! But you know that. Have you ever thought about teaching Ryan sign language? I have a friend whose daughter was taught sign language as a way to help her communicate. Just a thought.

    I am so happy for all of you that you received that very special and delightful gift of a trip to Disney World. Clearly, Ryan was the best and favorite princess around.

    Love & hugs – Heather

    Reply
    • November 17, 2014 at 3:46 pm
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      One of Ryan’s diagnosis, Apraxia, makes it difficult for her brain to get her body to do what she wants it to do…her brain has the words but it is hard for her mouth to make the movements. It also applies to her hands and fingers. She doesn’t have the finesse to do sign language accurately and broadly…they are more like “Sign Approximations”. 🙂

      Reply
  • November 17, 2014 at 4:42 pm
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    What IS normal? Ryan is as normal as can be. Sure, she doesn’t talk but she communicates very well. And she is so full of love it’s amazing. And she is all about family. Such a beautiful young lady.

    Reply
  • August 23, 2017 at 11:03 pm
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    I’m crying. This is beautiful. And now you are closer to Disney World. Enjoy! xxxx

    Reply
    • August 24, 2017 at 12:39 am
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      Hi Friend! Thanks for reading!

      Reply

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