Thursday, September 11, 2014

Hooked on a Feeling

It's about 11PM on Thursday night, a pretty standard evening at the HKU.  With as easy as it is to get worked up, overwhelmed, exhausted, tired and frustrated, I wanted to take a moment to remind myself that it's not always like that.  Some days are great.

Today, Micah is alive.
Today, he's been alert, smiling, and loving his pacifier.
Today, Micah's been sleeping with oxygen saturations in the high 80's.
Today, Laura and I went on a date for the first time in weeks. (Had drinks during lunch and saw Guardians of the Galaxy).
Today, I was able to join in on a virtual class for my MBA program.
Today, we've received an incredibly generous amount of money from our good friends and family.
Today, we've got "Gtube (then come back to HKU)" written on our plan board for tomorrow.

I know that there are some future parents out there who will read this blog, hoping to find some kind of solace.  When Laura and I found out about Micah's CHD before he was born, we searched for people who would share their story. We searched for parents who had children with a similar situation. We wanted information, we wanted to know we weren't alone, we wanted to know that there are real stories behind the diseases that was infiltrating our lives.

Early on, it felt like we went from preparing to have a baby to preparing to battle a statistic, a number, a deletion.  Imagine reading that CHD's are the leading cause of infant deaths...or that 1 in 250 babies have a heart disease... or that only recently 50% of CHD survivors are adults... or that a CHD will most likely lead to an invasive surgery in the child's life (Micah - of course - will have multiple).  Terrifying stuff that fills your mind instantly.  Out goes "what color should his room be?" and in floods "how can I explain to Dylan that ...  " (you get the idea).

All too easy, suffering overwhelms. It's easy to be frustrated. It's easy to place blame. It takes effort to be happy.

Some days, just mustering up the ability to "hang in there" will take all you've got!

But remember this: suffering doesn't make happiness worse.  If anything, it's sweeter.  When you're going through trouble, don't try to be a superhero.  Don't think you need to be happy. Don't compare yourself to an ideal standard.  But don't write yourself off.  Keep going, and be ready.  Your moment will come - your day will come - and it will be great.

It will be that "old song in your head, drifting off to sleep" feeling.  It will be that "smiling as you remember that kiss" feeling. It will be that "driving down the road, something sparks your memory, you laugh before the moment even comes to your mind" feeling.  It's that "mildly humorous story you tell a good friend, who finds it hilarious and you laugh along too" feeling.  It will be that "I can't believe this little fat-cheek baby is so stinking cute and breathing at 83% oxygen" feeling!