Walking With Eyes Wide Open

I was sifting through old blog posts to find something I'd written and stumbled across pictures of Isaac's belly before he had his g-tube placed. It made me so emotional to see his perfect baby belly. I really hope that one day, I'll see his belly again without a tube in place.

One time, when Walter and I were babysitting our friend's son, Milo. I changed Milo's diaper, and out of habit, carefully pulled up his onesie to check his g-tube...Milo doesn't have a g-tube. My sister recently pointed out to me that I talk with my hands more than I ever have. She said that I'm signing without even realizing it. This was after I was describing someone to her who usually wears glasses, and in this case, I wasn't even aware that to my cognitively aware and intelligent sister, I held my fingers up to my eyes like a pair of glasses, just in case she didn't understand the word, 'glasses'.

When Isabella was nine months old, I started teaching her a few signs. It's what everyone was doing, and sounded like a good idea. Who wouldn't want ease up the frustration that comes with deciphering your child's grunts and screams? We really only learned a few: more, please, help, thank you. That was pretty much all we needed to get by, and she ended up being verbal at a young age, so the signs were quickly discarded and forgotten.

Every therapist who meets Isaac is instantly impressed with his ability to use sign language. Sign language for us, has been a life saver. At first, I was embarrassed to sign with him in public. I have no idea why. Probably for the same reason I was initially embarrassed for him to have a tube-feed in public. People then pick up on the fact that something about him is different. He otherwise looks like a pretty normal child, aside from his abnormally small stature, but that usually just leads people to believe he is much younger than he actually is.

I don't mind that Isaac is different, or the fact that our lives have completely changed since his birth. I am saddened with the knowledge that he may not have the opportunities that Isabella will have, and also that Isabella is experiencing a vastly different sibling situation than we'd ever imagined. Either way, we are stronger from our experiences, and Isabella is an incredibly compassionate sibling, who has an understanding of g-tubes, tube feedings, how to turn on and off his pump, OT, PT, SLT, and feeding therapy, that many five year old kids don't have. She is his greatest cheerleader, and my hope, is that she will forever embrace those with special needs, and be aware of the unique challenges people face and not be afraid of them.

It's amazing how life takes you down paths you never thought existed. Our eyes are opened, and we are better because of it.

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As the finale of our two-week family stay-cation (that is seriously the dumbest word, but I'll use it anyway), we went to COSI. Isabella asked from start to finish, when we were going to Grandma's house. It didn't matter which grandma, she just wanted to know when we were leaving COSI, which cost a fair amount of money, to go to one of two grandma's houses, that were free. Lesson learned: just go to grandma's house.

Isaac playing with the iPad during a feeding.

And a few pictures of Isaac in his random sleeping positions...