Wednesday, April 23, 2014

Lost Dreams

Once upon a time, in my deepest fantasies, well before I met the Mad Scientist, I dreamed of having a a house big enough to entertain.  I dreamed of Saturday nights with lots of friends over, the kids running around having fun and the adults sitting around talking and playing games.  I dreamed of the simple things; the moments that I remember fondly from my own childhood.  Of course, at the time, I never thought I'd marry or have kids, so those fantasies were just fantasies.

Then I met the Mad Scientist and fell in love! We bought a house that was too small to entertain, but those moments were waiting for me right around the corner.  I couldn't believe how close I was to living out my fantasy life!

When I was pregnant with TRex, my fantasies grew and I knew life would be perfect.  (Of course, I didn't really expect perfection, but you know what I mean.)  Life was falling into place in a way that far exceeded my imagination.

All of that came crashing down when the Dancing Queen was diagnosed.  At first, we were simply too busy to and too scared of germs to entertain (and our house was still too small).  We couldn't go out in public much--there was too much equipment, we needed to maintain our routine for health, and germs were too, too scary.  So even when we were invited places, it was not feasible to go.  And even if we planned to go, many times we'd end up canceling at the last minute due to illness.  I've lost count of the number of fun outings we had to cancel literally as we walked out the door.

Now that it is slightly easier and we have a house big enough to entertain, the option is gone. We're never invited places and we have no one to invite to our house (and frankly, the energy to clean for guests, let alone cook, is way beyond our capabilities these days).  Besides, we still have the problem that routine is very important for health (maybe even more so these days).  Between work, school, doctors' appointments, and the kids' activities , we don't have the time travel to  see friends we used to have and cannot hang out to make new friends.

Maybe this would be our life even without a sick child.  Maybe we'd still stick at home most of the time with just the four of us.  But I doubt it.

I don't blame the Dancing Queen.  I know she would be out and about more than the rest of us if she could.  That is part of the problem.  She doesn't rest when she is having fun, so if we do go out, she needs at least a day to recover.  That is not fair.

I hate that we can't have the life that I had dreamed about.  I hate that people are uncomfortable around us or find it easier to ignore us because including us is too hard.  I hate that I can't let the Dancing Queen stay up much past her 7:00 bedtime.  I hate that I don't have the energy or time to invite people into our home so that I can show them we are normal and so that my children can have fun with others.  But most of all, I hate that its things like friendship, camaraderie, play dates, and memories never made that are lost to my children.

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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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