Tuesday, May 7, 2013

Compassionate Care

If you don't follow DQ's carepage and you don't know me in real life, you don't know that we were forced to decide a couple of weeks ago if we wanted to pursue heart-lung transplant for DQ or choose compassionate care. After weighing everything, we chose to stop fighting DQ's heart defects and choose life, allowing her to be a kid, doing kid things for as long as possible.  It is the only choice that made sense for our family and the goals we set for DQ's life all along.  DQ was officially admitted to hospice yesterday.

Now that we are no longer searching for answers and hoping for "fixes", life has been utterly calm; almost eerily calm.  I think a lot of that has to do with the drop in endorphins from always pushing for the answer.  We've been in emergency mode for over five years and suddenly, we're supposed to just live.  It is very weird to get used to and we don't really know how to live like this. We go through the motions, spend a lot more time snuggling and having fun, but there is a giant sadness that envelops us and rears its ugly head without notice, rendering each of us catatonic, weeping, or raging, depending on the day and the direction of wind.  We are working through it all together though. And, thankfully, we haven't all broken down at the exact same time, so there is always someone stronger to help us through.

TRex  has been mostly silent, but he is always thinking about his sister.  He is concentrating on the practical aspects.  For instance, this morning, we discussed how little DQ is and she asked if she would be taller than me when she grew up.  TRex responded "you won't live 10 years DQ, so you'll never be taller than mommy."  How am I supposed to respond to that?  She probably won't live 10 years, but I don't want her to give up as if it is inevitable.

Two weeks ago, as we sat at dinner eating homemade, gluten free corn dogs, TRex declared that when he was an adult he was going to the zoo and eating real corn dogs because DQ wouldn't be with him.

And around that same time, he let us know he was discussing DQ's prognosis with his classmate.  I can just imagine the surprise on the other first grader's mom's face if he brought it up to her! It is too bad I know only one other mom at the new school, so I couldn't warn her in advance.

DQ on the other hand, is terribly worried about being alone after she dies.  She is afraid we will forget her and will no longer love her. (Of course, we let her know our love will never end, even at death.)

The Mad Scientist remains the solid, unwavering man most of the time, but does allow himself moments where reality sets in.

Me . . .  I don't know.  I've been angry at times.  I've been very tired, but I don't think that is depression, but more closely related to inadvertently ingested gluten.  Mostly, I'm not sure what to do with myself.  How do I just sit back and let heart disease steal my baby?  I'm not sure how to not fight.

1 comment:

  1. Hug. My dear sweet friend I wish I had the answers you are looking for right now. Covering you in loving thoughts and prayers always.


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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