During the day, Drew is easy-going and low-maintenance (well, about as low maintenance as you one can be undergoing lengthy and painful surgery halfway across the United States so “low-maintenance” is relative.)  But, nights with Drew have been almost unbearable.

Drew hasn’t slept peacefully all the way through the night in a very long time, about a year and four months.  It started with his sleep apnea and 57 episodes a night of discontinued breathing according to a sleep study earlier this year.  Fifty-seven episodes, though he only woke up and disrupted our sleep once a night requiring one of us (usually Nathan since I work on the weekdays and Drew prefers him anyway) to finish the night sleeping in his room.  Now, I would give my right arm if he would only wake once.  No exaggeration, Drew wakes and cries, on average, six-eight times a night.  Just about every hour, some nights sooner, Drew stirs and cries, sometimes inconsolably, for several minutes and goes back to sleep.  Several minutes isn’t a very long time, but regardless of how short-lived it is, our sleep is interrupted none-the-less.

Sometimes he’s conscious and crying for a reason such as pain which we can fix.  But, sometimes I don’t think he’s awake at all.  Sometimes he’s speaking incoherently or saying things that makes me think he’s dreaming.  It’s incredibly frustrating for all of us.  Nathan’s and my days are filled with yawning and occasional nap-taking.  But, doesn’t seem to affect Drew much.  He’s as energetic as any other four-year old child and rarely takes a nap.  Oh, to be four-years old!  Reminds me, again, how being an adult SUCKS!!  In my next life, I will never never – NEVER – aspire to grow up and move out on my own!

Nathan and I haven’t slept together in the same bed for….a year?  It’s been forever I know.  We are a house straight out of the 50’s except a little more extreme as our beds are in complete different rooms.  I know it was a terrible decision for one of us to start sleeping next to Drew when his sleep apnea started and we are paying the consequences now.  But, our choice was either: ignore Drew’s cries and not get any sleep because you’d be amazed at how insistent Drew can be or actually get to sleep next to Drew.  Besides, anyone who can ignore helpless pleas of “Mama, Daddy, I’m skeeeeeeeer-ed!” has no soul. And, anticipating having these surgeries we wanted to make Drew as happy and comfortable as possible before “the storm.” Now, with Drew waking more frequently through the night, our comfort and presence helps get him back to sleep faster.

It has become such a problem in our daily lives that we are planning on asking Drew’s doctor for some type of sleep intervention.  I figure it’s highly abnormal to give a four-year old sleep medicine, but this cannot go on.  Of all times in our lives, we need our sleep during this trying phase.  It’s our only escape!

Moving on to better things, it’s Halloween and we’ve been “treating” Drew to a lot of fun Halloween festivities.  First we went to a Haunted Pirate Fest in Boynton Beach on Saturday where haunted pirates roamed the street fair.  Drew enjoyed the playground the most.  There was this very large, unique and epic jungle  gym complete with a lengthy maze of paths leading to cool hiding places and secret passageways.  Of course, the there were the standard twisty slides, tire bridge, and monkey bars.  Nathan and I had to carry Drew throughout the gym and I remembered fondly how Drew would have been able to hop around freely navigating the place by himself before Florida.  I sure hope that things get a LOT easier after all if this because this is so difficult, that things are going to have to be twice or more as great before the surgery to make all of this exhaustion and stress worth it!

 

 

 

 

 

 

 

 

 

 

Then, Sunday, we went to Jupiter to a Trunk or Treat at the Florida Atlantic University baseball field.  At first it was really frustrating because we were advised to “go to the left” where Drew would be able to enter the field in his wheelchair but come to find out, we had to leave through the entrance we came and walk around the entire building to the other side to access an entry that would accommodate his wheelchair.  Meanwhile, hundreds of people made it to our place in line.  Even though we had to wait in a very lengthy line, Drew was very patient and got a lot of time to practice his charm for candy.

While waiting for the lengthy  line all of the kids waiting got to enjoy running around and playing in the outfield.  Everybody, that is, but Drew.  There were so many kids out there that Drew wouldn’t have been able to move around without risking hitting somebody.  At the end of the Trunk or Treat line there were three bouncy houses that we knew we’d have to ignore and it made us really sad.  It made us sad that Drew is missing out on these times as a kid.  These are standard experiences for other four-year olds.  Luckily, it appeared that only Nathan and I were saddened as Drew didn’t seem to think about it any of it. He got lots of candy and had a lot of fun.  He said, “that was the best trick or treating ever!”

So, tomorrow Daddy’s leaving and two weeks later he’ll be returning mid-trip for Drew’s left-leg surgery.   Sigh.  It’s fixin’ to get bad again.