May 4, 2009
Saturday, June 4, 2011
Once in a while, as I'm compiling info from my first blogging effort at Small Portion of a Life's Journey, I'll throw in an old post as it pertains to families who are embarking on this journey of the unknown. The following post, my first EVER blog post... the beginning of my journey with my own little man, and where this endeavor all began. The aspiration to achieve the impossible, guided by my own little man on a mission of his own. Brayden had not even reached his first birthday yet, still fresh in that first year of emotional roller coaster rides. I find such great motivation by reading back to this very first post, with the intentions I had and still have. I hope that I've inspired someone, shared the inspiration my 'lil man has blessed me with:
May 4, 2009
May 4, 2009
A little over a year ago, it was discovered that I was indeed pregnant and there was most certainly something seriously wrong with the baby. Immediately guilt set in, since previous denial and even other options had come into play...however, none of that mattered anymore. I quickly remembered that I, myself, was not supposed to survive after being born with gastroschisis and my mother did not give up on me...
I never really was given a for-sure diagnosis in utero, basically they advised me to terminate the pregnancy and followed me along not really doing much else. Brayden wasn't supposed to survive to term, and the fact that I went in to labor early and had a traumatic c-section experience scared me into believing or almost wishing that was the case. But he survived, he thrives, and he's been growing strong for over 10 months now.
10 months may seem like nothing, but that's a huge feat to a child fighting to beat the odds and overcome many obstacles in his way...I say his, because ultimately they are his, but they're mine as well. We've dealt with pessimistic doctors who have done no more than tell us to prepare ourselves for the inevitable death that awaits him. We've been blessed with an early hospice care experience, learning to dispense morphine to a "dying baby in pain" which we never used and later ended up in the trashcan. We've fought with Early Intervention programs who felt there was no need to hurry along with the paperwork, because chances were they wouldn't need to make any visits. We've dealt with neurologists who felt that bettering his quality of life was contradictory...and that the textbook saying his prognosis was fatal, was the end of the story. I've done days and days worth of research to find some of the most horrifying things that people say to others in a similar situation as my own.
It hasn't all been bad, I've met some wonderful people along this road...other hydran families who've offered support and vast amounts of knowledge, and other families dealing with some of the same obstacles but in their own journey with another condition. The fact that I have done so much research and have been led to misinformation more often than not, scares me. If I hadn't found the right people in the beginning, I would have believed what I was told when I left the hospital with Brayden and would have given up fighting for his life...and he wouldn't be with me. How many other families were sent home from the hospital on hospice and told to "feed him, hold him, love him, and make him as comfortable as you can during these last days"? Yes, that is exactly what I was told....sadly.
So, I don't know where else to begin...I spend a bit of time reading of other people's journeys and decided to start a blog of my own. Ideally, I want to somehow raise awareness of Brayden's condition and correct so many of the misconceptions people have. I want to reach out to the people whom have left such hateful, ignorant, mis-educated comments on other forums and blogs and make them understand the truth and not just what they believe to be the truth. I want to help the families who are welcoming their own hydran-miracle into their life like others helped me. I want to inspire someone, even if it's just one person, in to believing in the impossible and not giving up an ounce of hope when led down a dark path.
Who knew, that nearly exactly 2 years later, I would be in the process of creating a nonprofit organization with the same hopes as in the very beginning. Some days are great, others not so much... but I have never stopped believing in the impossible, Brayden makes sure of that!