Friday, October 19, 2012

Finding Ian

Recently, Finding Nemo has become one of Ian's favorite movies, so I have seen it many, many times. As Ian grows up and starts having more and more new experiences, I realized that I am starting to feel a lot like Nemo's dad.

Though Nemo has grown old enough to go to school, when Marlin looks at him, he sees this:
© 2003 Walt Disney Pictures/Pixar Animation Studios.

Though Ian has grown to this:

When I look at him, I see this:

Six hours after giving birth to him, I was able to be wheeled down to the NICU to see my baby. Like virtually all babies in the NICU, he was on oxygen, IV fluids, and hooked up to a bunch of monitors. The hole in his spine was bandaged and wrapped in plastic to help keep his spinal fluid from leaking out until the repair surgery the next day. I sat beside him and stroked his head while he slept. He couldn't be held or fed until after his surgery and after the neurosurgeon gave the OK. I felt like we were both completely helpless.

I was happy and sad at the same time. Happy that I finally had my baby, and that he had made it this far. Sad that everything wasn't 100% fine and there were going to be a lot of hard things to deal with in the future. Like Nemo's dad, all I wanted to do was hold him and promise I'd never let anything bad happen to him.

The hard things never go away - and neither does the sadness - but luckily it is tempered by so many wonderful, special, every-day moments with Ian that bring me so much happiness and joy. Those are the moments that keep me going, even through the hard stuff.

Today, Ian went on his first field trip with his 4K class to a pumpkin patch. He got to ride on a bus with a wheelchair lift, which he was very excited about. I dropped him off at the school and watched him wheel down towards the bus with his teacher, so grown up and independent. 

Nevertheless, I still saw this (and probably always will):
Ian in the hospital after his first shunt revision surgery at 3 months old.

Saturday, October 13, 2012

Birthday Bash

Today, Ian went to his first birthday party, for a boy in his 4K class. It was supposed to be at a pumpkin patch, but because of inclement weather it was moved inside. I personally was excited not to have to try and push Ian's wheelchair around a field of pumpkins, rain or no. An indoor setting would offer him more in the way of freedom - he'd be able to push himself around and go where he pleased. I had grand visions of him rolling after the other boys, keeping up with them and playing their games. Even though I knew this was too much to ask - both of 4 year old boys, and of Ian - I couldn't help but imagine it anyway.

This is what really happened: the boys ran around playing while Ian sat by me, insisted on touching my face, and said "Hi Mommy" over, and over, and over. The birthday boy is a great kid - he spent time talking with Ian and trying to make him laugh and feel included. Ian didn't seem to want any part of that - he just wanted to sit by me and watch them play. I think he really did want to talk to them, but wasn't able to say what he wanted to, so instead just said "Hi Mommy" again and again to compensate. When it was time to eat cookies and ice cream, the kids gathered at the kitchen table. Ian fled. He wheeled down the hallway to the front door and sat in front of it, jiggling the handle. Cookies and ice cream were out of the question - Ian has issues with a lot of foods, and doesn't like seeing others eat - so he removed himself from the situation. I asked him if he wanted to go home, and he said he didn't, but he also didn't want to be in the same room as ten kids who where shoveling ice cream and cookies into their mouths. He wouldn't even look at me while I sat with him by the door and ate his adorable pirate cookie for him.

The part of the party that Ian enjoyed the most was decorating a pumpkin. He chose a black marker to color his pumpkin, and would occasionally use his other hand to smear his lines, for effect. He wouldn't entertain the idea of using any other color except black, but he colored the pumpkin a long time, and it looked very Halloween-y when he was done. It's now sitting proudly on our front stoop. 

Even though Ian couldn't keep up with the other boys at the party (and didn't really show any interest in doing so either), I'm still so happy that he was invited and had to chance to experience a peer birthday celebration. I'm glad there's a kid in Ian's class that he can call a friend, and who accepts him for who he is, challenges and all. Nothing bad happened - Ian didn't scream or cry or throw up - so if another kid happens to invite Ian to their birthday party in the future, I'll have many less qualms about letting him go.