This week I read another special needs mom’s blog, it was about everything that changed in her life, and her dreams when her baby was born. Later that day I was driving when a memory hit me – I remembered sitting in the NICU with teeny, tiny Isaac and crying….. because I was afraid he’d never enjoy a hamburger and fries. As I thought about this moment I started laughing – did I seriously mourn a moment like that?? Yes – I did. There are so many things we just assume our children will do, and that we will do with them – and this was a very small example of one of those normal things we might miss out on.
Of course, when looking at the big picture now, this was such a silly worry – but we had no idea then what we would face. When faced with the big picture a burger and fries don’t amount to much. This being said, they are still pretty important – as a symbol. Yes, we are more worried about Isaac having a secure airway, and the ability to speak, and an esophagus that doesn’t just start leaking – but we also want him to have all of the normal experiences he can.
This week Isaac started a little gym class, not something I ever thought he would be able to do, but he LOVED it. Kind of his version of a burger and fries 🙂 He loved playing and interacting and having fun. He did have a parent standing by ready to suction at any point in time (not normal!), but he got to experience it.
He also has started DRINKING out of a sippy cup, of course he then developed a nice case of aspiration pneumonia – but he loves to drink from his cup! He also likes to drink sweet tea, that comes from McDonalds – close to a burger and fries?? We’re getting there 🙂
So, while our dreams for our children change dramatically – we still have dreams for them. Sometimes the dreams change, sometimes they just take longer to achieve. Have I given up on Isaac ever enjoying a burger and fries?? No, I know he will, eventually. In the meantime I may follow my friend Lindsay’s lead and start blending them up and putting them into his feeding tube….. dreams can change 🙂