Owen's Journey

When I think about Owen's short life it is segregated into two categories: before we knew and after. The first portion started on August 27, 2011, when my beautiful baby boy was born.  He weighed a healthy 7lbs, 12oz,  had all ten fingers and all ten toes, a fabulous mohawk of red hair, and two perfect dimples.  He arrived on his daddy's birthday and is an amazing gift. Our first two months with Owen were bumpy because he had the trifecta: colic, reflux, and a dairy intolerance.  Tough stuff for such a little guy to handle and subsequently he spent his days either screaming or sleeping (although mainly screaming).

The after portion arrived on November 3, 2011, my dad's birthday.  After spending two days in the hospital with endless testing we learned that our beautiful baby didn't just have reflux and a dairy allergy.  Something much more terrible then that was the cause of all of Owen's crying. Owen has Leukodystrophy, a very large word for abnormalities of the white matter of his brain.  Severe abnormalities.  Life limiting abnormalities.  In one swift moment we went from thinking our child had three benign (although exhausting) problems, ones he would likely outgrow by three months, to realizing that our son is not going to live.

I have decided to write a blog about our life with Owen for two reasons.  The first reason is I need to chronicle his life and tell his story.  I want to talk endlessly about Owen because I fear he will be forgotten once he is gone.  Every day I have with him is an equal mix of exhaustion and amazement.  I love my little boy and I never want to forget how amazingly soft his cheeks are when you kiss them.  When he sneezes he always makes a little coo and kicks his legs up in the air (often four or five times in a row).  When he is upset I know it helps to calm him by rubbing his head.  He is still so small, but incredibly strong.  I love my little boy.

The second reason for this blog is for Owen's big sister, Ellie.  I want her to know everything about her baby brother.  She has loved him from the moment he arrived and is just waiting for him to sit up and play with her.  Tonight she brought over one of her Little People toys and placed it by his head.  She is ready and willing to share her toys, but is never going to get the opportunity.  Ellie is amazing with him and I am afraid that she will be too young to remember how special he is.

The length of Owen's time with us is still a question mark, but every day brings a new story.  Some are heartwarming and some are heartbreaking, but I want to share them all.  I love you Owen O'Donnell Marshall.