Thursday, May 8, 2014


There are two conferences that I have wanted to go to regarding two of the Dancing Queen's primary diagnoses--pulmonary hypertension and congenital heart defects.  The conferences would allow me to meet people in person who have felt like family and helped me so much over the last several years.

What's more, both conferences are coming up very soon--the same weekend in the same city.  I could easily attend both as the city is driving distance.  The fees are not prohibitive for me either.

And I almost signed up to attend both just for the opportunity to be in the room with people who understand what I am going through.  I was exhilarated at the thought.

Then I thought more.

None of the people in those rooms will be able to relate to me.  They go to these conferences to find hope for a cure; new therapies; new drugs; new ways to combat these devastating illnesses.  These people don't want to know I have come to terms with the fact that there is no cure; that I am not doing every potential procedure/surgery to prolong my daughter's death.  There is no place for someone like me at those conferences.

Frankly, I would want to scream after an hour of hearing people talking about breakthroughs  being made to help their children, while I have DQ's cardilogist and surgeon's voices in my head, repeating "No cure will come in time for your daughter.  They are not working on it yet.  It is too hard."

I know I'd want to throat punch every well-meaning parent who plies me with platitudes upon hearing the Dancing Queen's story.  Hearing "oh, I'm sure they'll find  a cure for your daughter" or "you should see my cardiologist, go to our hospital, your daughter will be fine" would make me want to bite back: "so you think I'm negligent because I haven't sought enough second opinions!"

Inevitably, I'd start to omit parts of DQ's story so I do not do something rash. But then I'd feel terrible, as if I was being untrue to DQ and myself. 

I determined that I'd probably leave the conferences sad and more alone than when I arrived.  I don't want that. 

I don't want singular talk of hope and cures.  These are life-threatening illnesses that are terminal a lot of the time.  Ignoring that fact just alienates those of us who have run out of options. And for what purpose?!? To make other parents not have to think about the fact that their child could die too! It's bullshit; all of it.

I'm not pessimistic, but I'm also not unrealistic.  Unfortunately, I am in the minority and nobody wants to be reminded of the uncomfortable truth about life-threatening illnesses.

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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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