Thursday, February 19, 2015

Emergency is Over

For so long (over seven years now), the Mad Scientist and I have been in emergency mode.  Comfort and peace did not seem possible.  In the back of my head, I was waiting for the calm before I would try to find a semblance of normalcy. I was constantly telling myself: "When DQ is better, we will do this or that; we will be happy."

The whole sick child thing is weird.  It made the Mad Scientist and I closer in many, many ways, yet further apart as well. I'd let him do his thing, grieve and deal in his own way. I'd do my own thing. All the while, we were both alone, even though we were very much together and doing everything as a team--except grieve.

In the earlier part of last year though, the Mad Scientist and I decided we couldn't continue to grieve alone.  We started to see a therapist together. We go every other week to work through our grief together and to understand each other better. We are trying to build ladders so that that wall that is our differences in dealing with a sick and dying DQ can be climbed. It has been a lot of work, but worth it.

The best part is that we are doing this together.  We are no longer alone in our grief.

I have learned so much about the Mad Scientist and what he is going through.  It has been such a blessing.  I do feel closer to him in a way that has been missing for so much of the emergency period.  And I know how to relate to him better and how to let him grieve.

What has been surprising though is how much I've learned about myself as well.

Last week, I had one of my biggest revelations. I'm still working through it in my head (hence the need to blog), but I wonder why the thought never materialized before.
Life sucks now because DQ is sick, but life is always going to suck in that way: DQ is always going to be sick or else she will be dead and that will make life suck all the more. We have to learn how to live despite the fact that nothing will ever be completely good again.  There is never going to be a moment in the rest of my life that will not have a tinge of pain, so I have to learn to make peace with that.
I know this should have been obvious for a long time--at least since DQ was admitted to hospice--but it hit me like a ton of bricks.  It continues to hit me; almost like the bricks are falling one at a time through a hole in the burlap bag hanging overhead and I can't move out of the way . . .
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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