Sometimes Darkness Reigns

Summer hasn't even officially started yet and I've got the doldrums, worse than that actually. It's hot, man, really hot. The temperature outside my kitchen window reads 94.5 degrees and that's in the shade. I used to really love Maine with all its diversity of seasons and such. Now, I can't say as much. Winters are too damn cold and snowy to do much of anything and summers now are so hot I barely stick my head outside our air conditioned house.

That's just it, you see I feel housebound and anxious. I get that feeling in my chest and it hurts. It's like I've forgotten to do something really important. Something life changing. I'm full of fears too. Constant aching fear that something is going to happen to my son. That I'll wake up one day and he won't or that he'll be gone, something really horrible. The nightmares are even worse. I guess this is what happens to a mind that has seen too much in recent years.

No one should ever outlive their child and when that child never even sees the outside of his own little glass NICU cubicle it's even worse. All that potential - gone. No one can ever understand what it's like. Every day you're there, it's a whole new roller coaster of emotion. The highs are so high it's like nothing can tear you down, then something happens and you get THE CALL, and your stomach plummets and your hands shake and get all clammy and there are dizzying spots in front of your eyes and you can't focus. The drowning fear that climbs into you when you hear the VOICE tell you that you need to come down to NICU because something is happening to your child again. You can't even look at your husband because his fears and pain hurt you even more. It's been 3 years and the hurt and the pain and the confusion don't go away. Why. He was beautiful even with all the tubes and tape stuck all over him. When his life slipped away it was almost more than I could stand. Relief, now he won't feel any pain. Guilt, because of the relief. Sadness so deep and complete and most of all, the fury. The sheer anger and apoplectic rage I felt, pure vitriol over the unfairness of it all. And it all had to be tamped down. Buried deep underneath the grief so I could pick up the pieces of my husband and my family and go home to an empty house and a nursery full of everything but what belongs there. The rage is like a black viscous liquid frothing inside me. I'm amazed, really, that I haven't gone completely batshit. But like everything there is always a good side to match and balance the evil.

Little O's baby brother, LD, and my hubby are shining beacons in my life. They keep me from crashing on the rocks and splintering everywhere, they keep the evil at bay. When my baby throws his chubby little arms around my neck and says, "hug" or "lov-ou" everything in my world is ok. I do everything I can to make his world be a good place to be.

How do you sign off from a posting like this? Frankly I don't know so I'll just leave it this way.