I'm not sure if many others experience this, or will understand what I'm even portraying with my thoughts through words...and I hope that anyone reading this doesn't take this post in the wrong context. But it's somethings I've pondered over for quite some time, and what better way to think it through than to share with you.
I like to think I have a wonderful support group, but it's not the support group I lived my entire life building. It's not family nor friends that understand the best... it's a new support group, full of new "family" who know just all too well the journey we are on.
I will say, that although attention isn't what I crave...it IS what I want. I want more than anything to share our journey with as many people as I can, not selfishly, but to help others who are not as fortunate as we have been. I, personally, have been blessed with the optimism to keep going with a positive attitude (for the most part) on what could be, and is, viewed by most as a very dismal situation.
My life took a very different path upon starting this journey. A journey that not I, nor any other soul on the planet, would have ever expected to make. No one person, close to me anyways, has ever voiced they're feelings on being part of this journey with us... I feel that many do it out of some sort of obligation, since that many are family and all. I have, however, in more ways than one, felt the feelings that people truly have. Actions really do speak on a much higher decibel than words could ever. Family, these days, aren't as close, nor are friends. Very few have become much closer, but most have drifted off to some far off place where the world is fair and innocent babies aren't teetering on the edge of life here on Earth. It must be hard, to know what to say or how to act, and I know first hand that in those moments it's easier to just hide from it. I don't resent anyone for feeling that way, I've been there, but I wish that those people knew that I would never expect them to know how to handle themselves under the circumstances. The wrong thing said can be overcome with a simple apology or the shear confession to how they feel. The great distance that grows out of this fear becomes a forever decision... once the separation is there, it becomes quite difficult to close the gap. It can take years, or I should say that it can be years wasted, ending when it's much too late and the reason for the journey has left.
I just wonder, how others living similar life experiences, have dealt with bringing the people who WANT to support the journey, comfortably closer? I like to think that most want to be, but are uncomfortable in doing so.... there must be a way for it to be easier.
My son, miraculously, is nearing his first birthday. I am so filled with joy in reaching this big day, in just 9 more days exactly...I never dreamed we would be so close. It saddens me, that many won't be celebrating with us. Not physically, I don't expect anyone to travel for a birthday and most would have to go far, but mentally I don't believe the happy thoughts will be with us, nor will we be top of mind to most at any given time on this momentous event. Again, no one knows what to say or what to buy or whether they should be happy, after all he is obviously not "typical" regardless of the obstacles he has overcome. He can't crawl, nor can he sit without a little help and he won't be digging in to his birthday cake with that great eagerness that most babies display on their first big day... he has, in my eyes, overcome so much and achieved greatness that many never do in a long lifetime and I wish that everyone could see it through my eyes.