Friday, April 20, 2012

Flashback Friday: Spring Program

This song just came on my ipod while on shuffle & I instantly flashed back to this day. Originally from my first blog, "Small Portion of a Life's Journey." If you have videos of your own little one with hydranencephaly that you would like to share on our foundation's YouTube channel at:

Yesterday was my son's spring program at school. He entered the preschool program early from our local early intervention program, that he would be graduating from in June anyways, on February 15th. It was such a hard decision to make, but after meeting the teachers and the staff I felt peace with that decision. Now that he has been there for a couple of months, I KNOW it was the best decision for him. He thrives in the classroom... classes are only allowed to hold 8 children. Many have limited abilities in the school. The teachers are all so involved and energetic, the staff is the same. He lights up the second we walk in to the school... he can't speak, but he beams enthusiasm and tries so hard when he's there. His new friends include him in everything, his teacher Mrs. Julie keeps him by her side... he is loved.

Yesterday was also an unbelievably emotional day for this momma. All I kept thinking about were the days during my pregnancy that I dreaded at the drs office, with them telling me over and over that he wouldn't survive until birth because his hydrocephalus was so severe that it had put him at risk for brain damage. Once he survived the birth, he was given his hydranencephaly diagnosis and we were told he wouldn't be going home with us until he lived days in the hospital and actually thrived while I recovered from my own complications. Upon discharge, we were offered the option of signing him over to the state to be cared for in his last days, he went home with his parents (we wouldn't have had it any other way) to be loved and was given hospice care. We prepared ourselves and my girls for him to die within days, every day was so scary. Every new sound was possibly his last. Every time he slept we worried he wouldn't awake. Instead, those grim days of preparing for the worst turned in to optimism and hope as he grew stronger, smarter, and much more full of invigorating life. We stopped preparing for the bad and started planning for his future with us. Yesterday I prepared myself to see him on stage with his friends, literally lighting it up during their song.

They painted an American Flag and attached lights from the flag to Brayden's switch for him to activate during the song... he knew his job, and was very serious doing it! I wish the video was better, but it brings me to tears every time I watch it... (be sure to click stop on the music player at the bottom of our blog):

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