Sunday, October 7, 2007
Where is our niche?
I often have to wonder where and when we will find a niche. I'm not sure there is one made just for us. Ben was a preemie, but a 34 week preemie who weighed 5lb. 7oz.. Boom! Right there. We are not term and we're not micro. Just in some no mans land where term parents wonder how you managed a preemie and micro parents wonder why you were ever in the NICU. Ben spent 28 days in the NICU. Again, more than many want to imagine and not enough to blink at for some. He was on oxygen for 5 months but doesn't have respiratory issues now so we don't fit typical but also, not so bad. Ben has CP but walks with a walker, has minimal increased tone and is verbal. We deal with social issues but he looks me in the eye and says "I love you, Mama". We don't fit. I'm not wishing for anything to be different so that we can identify more closely with any of these issues but I think that I wish others wouldn't be so quick to say "you're not like us". We, in most respects, are just like everyone. We were given a deck of cards with no rules, no guaranties and more than two jokers. Some days my life is more complicated than others, but everyday it is less complicated than someones. It makes my sad that Ben is disabled enough to get stared at by others but not so disabled that he fits into a community. Is the pain any different for a child in a walker as opposed to a wheel chair when someone says "whats wrong with him"? Is my fear more or less for Ben than Kiera? Is it harder to hear "your baby is not breathing" when you have a 30 weeker or 34 weeker? We can't feel each others pain and for that reason alone shouldn't we be cognisant that others have experienced pain? Regardless of the situation? Shouldn't we embrace what we have learned, and do everything in our power to ease the pain of others? Yeah, I guess I want to buy the world a Coke (Pepsi really) and find a perfect harmony where we just support each other, where we just fit.