I don't have the foggiest clue who this Reginald guy is, but this quote really hit home with me upon finding it a few weeks ago. If it doesn't make sense the first time you read it, read it again...it's my law of life these days!
I've been oftentimes accused of many things that are far from true, lately it's been that I'm living in a state of denial. I couldn't be further from the state of denial, than I am right now. I've educated myself in all aspects of hydranencephaly, what I'm facing by caring for my son, and I know the inevitable will one day come... there's no denying that for any person. No matter the life we live, death is the end. But I also know that to give up hope and not pursue on in giving Brayden the best quality of life possible, is just a ludacris idea as a mother. That is something that just isn't going to happen. I have my moments when I question what I'm fighting for when the fight gets to be neverendingly brutal, then my 'lil man and my girlies bring me back to reality to remind me I'm in control of their destiny...I'm setting the tone for the rest of their lives, regardless of how little or long it is! And I'm sure to provide them with everything they need to lead a wonderful life...no matter the fight involved!
The question of "quality of life" comes up quite often, sometimes in personal conversations but more often in conversations behind my back in the form of whispers or worse, "I feel so sorry for....". The idea that I'm being selfish by sustaining my son's life with a "terminal" condition is the hot topic. His life isn't being "sustained" but is being LIVED, and that is just unfathomable to some. My son is living with a hydranencephaly diagnosis, he's not just the condition, he's a baby...he breathes, eats, plays, observes, loves, and ultimately he LIVES. He wasn't supposed to make it in to this world, he wasn't supposed to leave the hospital, he wasn't supposed to survive his shunt surgery...he's been surrounded by pessimism his entire little life. Some have distanced themselves from us and our story because they see things from the outside, but don't know what's really going on although I put everything out there to prevent any confusion and to educate everyone on the everyday obstacles he's endured and overcome. We take each day at a time and have been very blessed to have seen the improvements thus far, despite the odds, and although his "quality of life" may be less than great to some...although he may never have independence...he'll always be surrounded by optimism from the people he loves and that love him.
As much as I'd like to say that all the talk doesn't bother me, I'd be lying if I did. I often think that I should print up a small business-type card and hand it to people to direct them into educating themselves in regards to my son. Maybe one day I'll do just that. To hand to the people who stare, to the people who whisper, to the people who make snide remarks...the world is a different place to me now. I've been witness to some of the most appalling behavior from adults, it would be unbelievable to most. Ignorance is bliss, so they say, and many people live by that motto. How sad is that to say? The saddest thing is that oftentimes those people are caregivers of medically fragile children themselves, that are no more than just that...caregivers.
On the other hand, I've been networked to some of the strongest, caring, unselfish people I've ever met that have transformed my life and my views on the world. Other people full of optimism under the gloomiest of conditions, who stand up as if they're invincible in the face of undying pessimism. Those are the people that have ultimately inspired me to "make opportunities of my difficulties", to reach out and try to connect with more people on more levels...to share my story and be one of those people to others, and inspiration and source of strength and endurance. That's my opportunity so I'm taking it...