And then we somehow find each other, but it's mostly through the heartache of broken dreams and the anxious nights bent over hospital beds watching monitors, willing our babies to take just one more breath. We find each other because we have to. The support and encouragement from one another is sometimes all we have.
Last week I posted a link to an article and it prompted a few angry comments. Those comments were deleted. Sometimes when you read a new idea, you may be defensive at first or challenged in some way. I was touched by the spirit of the article, being Jack's mom. It spoke to an important theme to me as of late. About the innate worth of human beings, based not on health or ability, but because of the very fact they are human.
Since I'm not interested in debating (because this is our story and not the right forum for debate), negative comments get deleted. I always scratch my head, though, when someone takes so much time and care into writing about how us special needs parents are too sensitive, too this, or too that. I hear often that we need a thicker skin. And more so, that we should just imagine how we would react if our child did not have special needs... because people shouldn't have to walk on egg shells around us.
I just want to shout it from the rooftops - I don't write or share here for you, the person whose life has not been touched by prematurity, medical trauma or special needs. That is why you may not get many of the thoughts or feelings we have as special needs parents. I am certainly flattered that you come back to hear about our boy. He is pretty great! My only suggestion is that if you choose to read and follow our story, you understand that debating special needs parents will get you nowhere.
Further, we do not have this luxury of "imagining" what things would be like had extreme prematurity not touched our lives. I can't change the fact that my child has all his diagnosis nor do I want to ponder what he or I would be like if he was totally healthy. To demand that is not only odd, it is a dangerous rabbit hole, certainly not healthy, and most importantly, does no good.
Jack's birth and the lessons I have learned from the past five years will forever be the landmark of my life. It changed everything. It is the perspective that I so cherish and I am much too protective over that perspective to let those who don't understand it, rattle my feathers.
But this week they did. Not every day is a "I feel strong day." Some days are just survival. But that is why we have each other. So we won't lose our perspective or the realization that we have this amazing community. We are not forgotten when we have each other.