I feel kind of selfish.. and I'm sorry for that. I kind of feel like I'm wandering through a fog; going through the actions, but when I look back at the previous day I can barely remember doing anything at all! The days and nights seem a bit easier... as long as I don't go in to Brayden's room or think too much about the things that are lying around untouched and never to be used by him again (his toothbrush is a biggie for me, but I can't bring myself to move it off the bathroom sink though we did move his equipment out of the living room and it broke my heart). We all find comfort in chatting about all of the things Brayden is doing now that he couldn't do before... but we are still sad he's doing those things without us, that he had to leave for those hopes and dreams we had for him to be possible.
I've received SO many messages and I'm so thankful for them all! I will never be able to reply to most of them, but please know that I've read every word and appreciate the time and thought put in to them.
I still feel as if I've been living in some sort of denial for years. I always swore I wasn't, that I knew Brayden's life would be limited. I remember when he started having seizures, how I thought he'd be the exception to the fact that most kids with hydran have seizures. It's the same kind of thing now, that I felt as if he'd just live in to adulthood and keep defying all of the odds. It has even been mentioned by a few others... Brayden was always doing everything the doctors said he would never do, that's just what our kids with hydranencephaly do. So when the moment comes that the doctors are right for once, when their little lives on earth are through, it's even more devastating that can even be described with words. You go through years of celebrating and making a huge deal out of the smallest of things they achieve when they're not supposed to have... then it's all gone and I almost feel like all the effort and optimism is and was pointless. But at the same time I watch, from afar, the many bee-buddies we have made as they thrive and grow... nothing was pointless.
Those last moments play through my mind, over and over, as I'm sure they will for the rest of my life. Part of me in those moments was scared, but he had overcome everything else that I was almost comfortable in a sense of thinking that moment was another obstacle he was going to hurdle and overcome. That the EMTs would wisk him off to the hospital where he would have a little staycation and come home a few days later. He didn't... I feel like I've saved him so many times since pregnancy, this time there was no saving him because his mission here was through.
Back to feeling selfish... I have to admit that I am so wrapped up in my own sadness and struggles that I'm having a hard time even acknowledging that anyone else is hurt and sad. I know how sad it made me when another child with special needs, or even those without, would gain their angel wings. BUT, I know that SO many people are also grieving for his loss... family, friends, people who have only read about it and never met him. I'm sorry to those who have called repeatedly, only to be ignored or have their calls never returned. A conversation with me will be one-sided and I'm just not ready to cry in to the phone yet unless I have to as I'm canceling appointments and trying to take care of any instances that may arise later that will knock me off my feet unexpectedly...
As for Brayden... his misison is far from through. I like to think that his little life changed the lives of so many others... in fact, I know it did for some. And through his foundation, which I'm slowly finding strength in my passion for, his light will keep shining and changing other lives... especially the misconceptions that exist upon diagnosis. There are so many things I've put off over the past few years, I'm glad that creating Global Hydranencephaly Foundation was not one of them and so thankful to have found others who are willing to volunteer their time and share their passion to help make it successful. And for me, there will be very little that gets put off from now on...
love to all...
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