The Past Two Weeks

The past two weeks have been eventful for our family and Owen, here is a quick recap of what we have been up to:

Owen developed a pretty nasty cold with symptoms starting on February 28th.  Those of you who are paying attention will know that Owen was born on Pete's birthday and diagnosed on my Dad's birthday.  I now have a new fear and dread for important birthdays because I am convinced that we are going to lose Owen on one of them.  February 28th is my birthday, and while he survived the day just fine, he did continue to get sicker as the days passed.  At his worst point, his cold had moved into his lungs, which had us very frightened.  Owen is an impressively strong little boy, and a fighter.  He managed to cough and cough and cough and clear out those lungs all by himself!  Two weeks later, he still has a terrible cough, but his lungs are clear and he is improving.  And now I have many days before I have to dread my birthday again.  Here is to getting past April 28th, Ellie's birthday!

During the worst part of his illness, we had a photographer come to our house and take pictures of our family.  The Tiny Sparrow Foundation is a non-profit foundation that provides professional photos, free of charge, to families with children suffering from life-threatening illnesses.  A pretty amazing gift, and one that we will cherish forever.  Here is the link to a musical montage of the photos they took.  Sadly, Owen was super sick that day and we didn't get any of him smiling, but there are some fabulous dimples hiding in those sweet cheeks.


http://tinysparrowfoundation.org/?p=1904



The low of the past two weeks, is how Owen has been doing overall.  We have increased his medication because we were seeing the Owen of a few months ago returning.  The heartbreaking screaming, head thrashing, uncontrolled body arching, and overall irritability.  With the higher dose of medication, he is calmer again, but it is just so sad.  This morning he woke me up by letting out the most terrible ear piercing scream along with an arch.  After about 5 seconds, his body relaxed and he drifted back to sleep.  He did this again 3 more times before finally waking up about an hour later.  It is so painful to watch him like this.  He eats very little, is medicated around the clock with increasingly high doses, and still seems to have tremendous moments of pain and discomfort.  I find myself asking over and over, "Is there no mercy for this baby boy?"  Why does he have to suffer like this?  What is the point?  I love him so dearly and the calm and peaceful moments we have with Owen are amazing.  He is so sweet and cuddles his body into yours when you hold him.  But is he living? I think Owen is merely existing.

The thought of Owen dying is terrible.  I just cannot imagine life without him, nor do I want to.  He fills my life with such joy, but my life already has wonderful things in it that provide me with joy.  My husband and Ellie are two amazing blessings.  I want Owen's life to be filled with joy.  I know that whatever comes next for Owen is his time to shine.  Peace, comfort, and love are the best I can do for him in this life, but he deserves so much more.