Ayrie’s life as a recent 2-year old

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For much of this year, I forgot that I was living with a 2-year old.  There were times when Ayrie seemed older and wiser than I did.  He is thoughtful, contemplative, inquisitive and loving.  He always asks ‘why’?  I thought this stage might be annoying or tedious, but it has been amazing!  He truly wants to know why and you can see his brain making connections, testing hypotheses and formulating additional questions.

The words that come to mind when think back on Ayrie from this year are Independence, Love, Inquisitive, Language, Health, Active, Happy & Big Brother.


Oh, this makes me laugh just thinking about it.  Ayrie is so very independent.  He gets himself dressed in the morning and makes his own breakfast.  He can brush his teeth on his own, clean up his own spills and help me clean.  One of his first phrases was ‘Ayrie do it’, as in, don’t do it for me, I’ll do it myself!  It’s progressed into Ayrie saying ‘Follow me, I’m the leader!” He reasons with me and gives me choices, just the way I do with him.  I’m living with a 2-yr old, teacher and mother rolled into one!


Ayrie talks like a little adult.  When I asked him if he liked the birthday decoration that I made him, he said, “Yes, I sure do.”

When I tried to buy myself time by telling him that we would talk about something in the car, when we were buckled in and I turned the key I heard Ayrie’s little voice…”Remember, mom?  You said that when we got in the car we would talk”

“Let’s talk about….”  This is how he goes to sleep every night and before every nap.  He likes to talk about upcoming events (surgery, moving, a visit from relatives, etc.), he likes to review the day, tell me about a show he saw…  He processes and makes connection by talking things through and we talk a lot!

Recently he’s been learning letters and their sounds, and is intrigued by the idea of creating words.  He’ll string together a bunch of magnetic letters on the refrigerator and tell me that the letters spell the word ‘ball’.

There are at least 100 songs that he know the words to and can sing along to.  He’ll stand in the kitchen, near the speakers, and dance and sing.  The Polar Express, Sesame Street Platinum and Ralph Covert are his favorite children’s albums right now.  But he also loves to watch Kanye West, The Beatles and Guster YouTube.

What’s amazing about his languge is that he sis not have a voice above a whisper for much of this year.  Sometimes this bothered him and other times he just went with the flow.


Ayrie was jumping up and down on the bed (he’s always moving) and singing the “We love” cheer with me.  We would say “We love ‘Emmy'” and then throw our hands in the air five times and say ch, ch, ch, ch, ch and then repeat again with someone or something else that we love.  Ayrie must have listed more than a hundred people and things that he loves.  He hugs and cuddles and his capacity to love seems endless.


Ayrie had his first surgery soon after his second birthday and has had nine this year.  They were getting closer and closer together until we started the cidofivr treatments and we are at surgeries about 5-weeks apart right now.  You can read more about the ups and downs this year.  In the beginning I felt that we would be ‘best case scenario’.  But August I thought he was dying.  Now I am just cautious.  Every day before surgery it crosses my mind that this day could be Ayrie’s last and I do a mental check…am I giving Ayrie a life and a day that I can look back and feel good about?


Ayrie and I spend a lot of time listening to music.  For example this morning we were listening to Pandora on the internet and they played “I’ll follow the sun’ by the Beatles.  I have always loved the song but didn’t fully appreciate the meaning behind the lyrics until I heard the song on Pandora today.  I posted a quote from the song on Facebook and dad soon sent me a link to a video on YouTube.  Ayrie spent a better part of the morning listening to the Beatles and we made a playlist on YouTube.  He has the lyrics to over 100 songs memorized, and he likes to talk about each song to make sure that he understands the meaning.  He’ll say, “What did that mean?  What did they say?”

Big Brother

In Ayrie’s second year he went from having a brother that could only eat, cry and poop, to one that could wrestle with him, laugh with him and take away his toys.  They have a very sweet relationship and Ayrie is quite a little care taker.  If Shiya cries, Ayrie is  quick to suggest why Shiya might be crying and what I could do about it.  He says things like, “Mommy, Shiya  is crying because he wants his mommy.  He wants you to pick him up.”  Or if he thinks Shiya is thirsty, he’ll go get Shiya a juice.