Celebrating Two!

Celebrating Owen's second birthday is a pretty amazing feat.  I really did not think I would have the opportunity to whisper, "Happy Birthday, my sweet boy," to him another year.  Owen is leading me down a rocky path, but he has proven time and again he is here to fight.  His life is on his own terms and I am just chasing behind trying to keep up with him.  A mother's eyes are always biased, but I know my guy is one of the cutest kids on the block.  His red, curly hair and gorgeous blue eyes draw people to him.  The irritability of his first year and a half of life has mainly subsided.  He melts his body into mine, wraps his long fingers tightly around my hand, and I could spend an eternity 'a-gooing' with my delicious little turkey.  I have never been more in love with my sweet Owen, which makes the realities of his life so difficult.

This past year has brought us the diagnosis of Infantile Spasms, the disappearance of smiles and giggles, a confirmation of legal blindness, respiratory complications, loss of movement in his legs and torso, a confirmation of genetic rarity and mystery, dramatic progression and disappearance of white matter in his brain, a feeding tube, regular bowel issues, a full-time team of home nursing care, and the list goes on.  Instead of a thriving, skill-gaining two-year-old, we have a wheelchair bound, heavily medicated, seizure-laden little boy who continues to lose the little bits of life he has.  These are the realities of life with Owen.  They are harsh, but they are facts.

Is he still amazing, sweet, handsome, delicious, and a blessing to our family? YES! Can he feel the love that surrounds him by our family, his therapists, and doctors? YES! We will celebrate every year with Owen that he chooses to share with us.  Our goals for him remain the same; comfort and quality of life over quantity of life.  Owen has taught us a lot about parenting a medically complex child.  We can make statements like: "No feeding tubes!", but the reality is we are unwilling to watch our child slowly starve to death.  That does not fall into the category of quality of life.  I cannot watch my child writhe in pain due to bowel obstructions; I am going to medically intervene even though the cause of these obstructions lies within the realities of his brain disease.  At what point do you say enough is enough when the medical world is at your finger-tips?

Two-year-old Owen

I have no idea what the next year will bring for Owen.  My hopes include a diagnosis and comfort.  I just recovered from grieving the possible loss of him in early August.  Yesterday, Owen spiked a fever and vomited for the afternoon because he spent time outside.  My sweet boy has such a hard time maintaining his body temperature- very common with neurologically involved children.  It is so sad to see him struggle through days like yesterday.  His disease puts limits on every single aspect of his world.  Everyday is a roller coaster with my guy.  Will there be a 'Celebrating Three!' post in the future? I am not sure- and it doesn't matter to me.  If Owen wants to celebrate another year then I will be along side him.  Happy Birthday to the sweetest little two-year-old around.  I love you!

This is my alert happy guy a little over a year ago. He is so adorable! 

This is Owen demonstrating that just a year ago he could pick his feet up and move them around.  He could also bring his hands together and bring them to his mouth.  He cannot do any of these skills one year later. 

This is the last picture captured of Owen smiling.  It was taken in July 2012.   It was a great moment in time with his cousin Andrew, but who knew how special this photo would become?