The beginning- Part 1

This is the beginning. Of what, you might ask, well, I am not sure. I created this as a way to reflect. Javad's Journey isn't really just about Javad. It's about us all, our whole family. We have walked this road together. Four years ago (well, almost five!) on November 1, 2001, Javad was born. We were so excited for the upcoming birth of the addition to our family. Who knew what was in our future. I, of course, was feeling great, ready to coach soccer some more. I never expected that he would not be breathing well, be whisked out of the operating room (I had a c-section) and into the level 2 nursery at Providence Portland. So, here I was, in my room, on pain meds, not seeing Javad, but knowing that something was wrong. Eight hours later, when I finally got up and went to the nursery, I knew that something was very wrong. There lie the most beautiful boy, not moving, looking like a doll. I cried. I had already given birth and knew what a newborn should look like. Javad just laid there almost immobile. There was no movement on his own. His head was under an oxygen hood (so his face was all sweaty and pink!). I looked at him, held his hand, and prayed. After 24 hours, the decision was made to move Javad to Legacy Emanuel Children's Hospital to their NICU. BY the time I got there (2 hours later) the doctors had told David that there were sooo many things wrong with Javad. I had a HUGE breakdown! I just wanted a healthy little boy! This wasn't at all how I had envisioned things. By that night, they had ruled out all of the really bad things (enlarged heart, bad liver, etc), but still we had a non-moving beautiful baby boy. They thought that he had a muscle disorder called myotonic dystrophy (glad that ended up being a negative...I din't think it's very good! Ultimately, we left the hospital three weeks later with no diagnosis. "Some children are just never diagnosed," we were told. Okay, I guess in the bog picture it really made no difference, we would love him just the same! So, we went home, celebrated Thanksgiving with my parents, Stesha, my sister, and her 2 month old, Dakota. It was a little rough to have another newborn in the family reminding me how Javad should be. Don't get me wrong, I love my niece and my sister. It's just difficult sometimes. Now, looking back ,I don't regret anything. I am a better person, my family are better people, I have learned so much. That is what I intend to talk about. Who are we on this journey? Why were we chosen to walk this path? How can I help others who are one a similar but different path with their children. I will continue this tomorrow for the beginning part 2. There are so many parts it seems odd to break it down into only two, but we must start somewhere...

Love thoroughly...live fully...forgive completely...peace always

Shannon