Beep Beep!

Anyone who's spent an extended period with a really sick person in the hospital knows how much machines beeping becomes a part of your subconscious.  I'd swear I'd hear beeping of an IV pole even after I was home because it was so constant there.  Every one of the things you see below on the pole can run out, complete it's infusion, or just get kinked up and beep.  And some nights it felt like it was one or the other every 5 minutes.

And with Drew's feeding tube, we still had beeping at home.  When the bag would be out of formula, or it'd get out of place in his backpack if he was being fed during the day--especially at the park, it would beep.  I remember hollering to him many times--"Drew!  Are you beeping??" If I thought I heard the alarm.  And he'd holler back, "Nope!" Always. Even if it was, just because he didn't want to stop playing.

Or when the tube got kinked up at night if he rolled around too much or laid on it--I was always attuned to that beeping and would react instantly to it--by waking from deep sleep myself and hurrying to his room to fix it at night, so it wouldn't wake him up.  Even after the transplants, when I knew he couldn't even hear it anymore since his high frequenting hearing was wiped out, I'd rush in to him.

One afternoon recently Molly had her usual quiet time in the afternoon. We use our "Okay to Wake" clocks to regulate quiet time, and apparently I'd set it to sound an alarm instead of just glowing green.  She must have only snoozed it when she came out, because as she sat on the couch and I was in the kitchen I heard the beeping--and instantly my body responded.  I could feel my heart race and inside I just felt panicked.  It brought me back, so quickly and clearly to those feeding pump days and IV poles and...Drew. I went back and silenced the alarm.  But I stood in Drew's doorway for a while, closing my eyes, and picturing his crib, him sleeping in it, and his pole we had at home for the feeding pump right beside his crib, and cried...

Oh, if only I could really go back to that time, to those days.  I wish I could silence his pump, fix the kink, and stand there and watch him sleep again.  He'd be clutching his blanket tags, and sucking on his binkie, looking so peaceful and perfect. It's in moments like those, as I stand there in the doorway in tears, that my mind joins my heart and still can't believe this all really happened to us.  That I'm really longing to be dealing with a feeding tub pump because my child had CANCER, and then that he's gone.  He really died, and I'll never see him again until I join him in Heaven. How does this happen?   Why does life have to be so hard, why does it have to hurt so much?

This is happening, and then Molly calls for me.  Finds me crying in his doorway and pulls me back into reality.  "Come on, man!" she says and off we go.  To the Y, or to Walmart, or the park.  Places where very few can understand what it takes to keep functioning, to fight so hard just to get through the day.  And I'm glad they don't.  Glad I have them to distract me, to remind me that the whole world isn't bad.  That life does still go on.  And to give me hope that someday it won't be as hard as it is now.  I won't have to "gear up" to go out and can go a day without crying.   Because I do have moments, mornings or afternoons like that already. I am making progress.


Summer is almost over.  I just uploaded a ton of pictures to my Summer '17 Facebook album and I can't believe all we've done.  How "normal" we appear.  We went to the pool--a lot more this year than ever. 

Watched our garden grow...

Rode the Gator to the park...

We've visited family.  We went to the fair...
 

We went on a family vacation to Colorado...

  And we truly have enjoyed these things.  I'm so happy we've been able to get up each day and continue to live life, for Molly, and for ourselves.  To chose joy as much as we can.  But all these fun events, exciting afternoons, and happy days weren't without that ache in my chest, and the occasional tear down my cheek (thank goodness for sunglasses!).  But, like I've said, I've learned to expect and accept that life will always feel different.  Emotions so complex, feelings hard to describe.  And I'm deciding it's okay.  It's the impact Drew's had on me, it's his memory still with me, and I never want to lose that. But I can see the light, see that someday, we will feel just as "normal" as we look from the outside.

But these reality checks, these panic attacks brought on from a simple alarm clock, I'm more and more convinced is some degree of PTSD, stings like a slap in the face.  It reminds me that I may "forget" for a moment, and feel almost normal, but the grief is there.  Just waiting for a trigger to unlock it again.  The child psychologist I've talked to says these attacks will get less and less.  The more these feelings are dealt with they will lesson each time they are triggered.  I hope so... 

I'm glad for the Summer we've had.  It's been probably a needed distraction and relief from the work that grieving is.  I never would have thought of all the different ways this process exhausts you.  It's not just as simple as "missing" them, although some days it can be just that simple.  And I was really not taking any breaks for a while there.  So while I've not been writing as much, not been crying, I did get a break.  But much like a vacation, it's not like your work just goes away.  Just like in the office, it builds up.  And I can fell it building.  Something will happen, I'll experience a different feeling, or be reminded of the past but have no time to process it, to stew on it, because it's on with the next place we have to be!  And they'll catch up to me.  Or stop me dead in my tracks like that beeping.  And I'll continue to write, because it helps me so much.  To organize my thoughts and figure things out as much as anyone can this side of Heaven.  And if it helps someone out there in the process, it's worth the risk of sharing so much of me.