'Tis The Season

Early October is always hard for me.  It has become my scheduled extra worry time.  Today marks the morning of Emmeline's first of many surgeries.  It's hard to think back on what I thought my life would be like then and what it has turned into in reality.  When you're told your baby needs surgery, you assume it's just the one.  That they will fix whatever minor problem there is and you'll be able to get back to your "normal" life with a newborn. 

For us, this was just the beginning of a long, rough road.  Just 2 short days after this first surgery, we would be admitted to the hospital for 6 weeks after Emmeline stopped breathing. I would live 2 hours from home, half of the 6 weeks at the hospital and half at the Ronald McDonald House. Emmeline would endure 5 surgeries and countless test during that first hospital stay.  In the end they only sent us home because they had no idea what else to do for her and were afraid she would get sick if she stayed in the hospital during flu season. We settled in at home with a portable hospital room.  The only thing I couldn't do was start an IV.

That time was such a blur. I remember a lot of tears, anger and sadness.  Watching your child struggle to breathe, eat, and feeling just plain miserable was beyond heartbreaking.  She hated to be held by the time we got home because she basically only got picked up at the hospital for tests, so she associated begin touched with pain. Holding her while her little body flailed, trying to get away, was shattering. 

To date, Emmeline has had 14 surgeries and has probably been sedated close to 50 times.  It's been a rough road, for all of us.  She's the toughest person I know. I wonder if she even knows that? To her this is just her life. She's never known anything different.  I know though.  I know how much harder she has to try to do pretty much everything that just comes naturally to her peers. I still get angry about it.  Why her? Why does her life have to be so hard? She has the same dreams and desires about her adult life as any kid.  I hate that I know some of those things are impossible.

For some reason October triggers all these memories and fears about the future. As the leaves fall, so does my sanity. Thankfully,  Emmeline isn't having acute near death experiences on a regular basis anymore.  She can walk, talk, cuddle, draw, run, skip!, ride a bike and so many more things doctors told us she likely would never do. Like I said, she's the toughest person I know.  I just wish she hadn't been put in situation where she proved that at such a young age.