Thursday, April 24, 2014


"Mommy, some kids don't like my shoes."

What do you mean, baby?

"They don't like the way one shoe is bigger than the other."

Do you tell the kids that these are your special shoes to help keep your legs even so you don't have hip and knee pain?

"Isn't there something else we can do instead of shoes?"

Your doctor who takes care of your legs said that he could do a surgery to cut a large piece of your big leg out and then your legs would be the same length.

"They will cut out my leg?"

That was the plan, honey, but we're not going to do that any more.  It is not worth the risk to you when your special shoes help just as well.

"What do you mean by risk, Mommy?"

When anyone has surgery and has to go to sleep for it, there is a danger because a machine is breathing for you instead of your lungs.  With you, Dancing Queen, it is much more dangerous because your lungs are so sick.

"So, the doctor's not going to cut my leg?"

No, honey.  We're not going to do that.  Your special shoes are much better than taking out a large piece of your leg, aren't they?

"Yes, Mommy, but I wish they weren't so big."

I know, honey.  Me too.

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.

Tuesday, April 22, 2014


The Dancing Queen has been doing relatively well.  If she is declining, it is not as obvious as a year ago or maybe it is as obvious, but I am no longer shocked.  We still have days that are blatant reminders of what is to come.  But most of the time, we live our normal.

Because we have routinized living with heart failure, it feels like it is wrong for me to feel sad.  But I am sad; so very sad.

I have bouts that take over my entire being and leave me a puddle on the floor.  The triggers may be obvious or out of the blue.

For instance, an obvious trigger was X commenting how amazing it is that people could die of pneumonia in this day in age.  She has no clue how common pneumonia is or how deadly, nor does she realize how very possible it is that an everyday bug could lead to pneumonia and kill my sweet girl.  Hearing her tactless comment was hard, but also not completely unexpected, so I was ready.

I wasn't ready when the Mad Scientist sent a simple text letting me know our taxes would be timely: "watched her post mark the letters as I stood there. we're good."  I'm not exaggerating when I say reading that text literally took my breath away.  I would have fallen down had I been standing.  Instead, I crumpled into a heap in my chair, sobbing uncontrollably.  It took all of the energy I could muster to stifle the earth-shattering groan that tried to escape.

Thinking about it a week later still makes my heart hurt and the tears are flowing again.

Why does a seemingly irrelevant text hold such power?

Simply because paying taxes reminded me how much I have to work and how little time I have with my children and how precious that time really is.

We have no idea how long the Dancing Queen will remain in this current routine.  No matter how comfortable it all feels, that clock on the time bomb continues its relentless death march.  And it makes me sad, so very sad.

Wednesday, April 2, 2014

Sleepless . . . Again

I haven't been sleeping.  I don't even remember the last time I had a full night's sleep.

I've never, ever been a good sleeper. It has never come easy, but this is so different.  I've blamed my thyroid (or lack thereof).  I've blamed seasonal allergies.  I've blamed gluten.  I've blamed the Mad Scientist's snoring. I've blamed being too cold at night, being too warm at night, back pain, leg twitches, the Dancing Queen coughing over the monitor . . . The list goes on and on.

Every night, something different keeps me awake. Melatonin no longer works.  I've taken the new ZZZ sleep, but it only lasts for about 4 hours, then I boing awake again. And in the morning, I'm so tired. By afternoon, I can barely function.

Is my lack of sleep directly correlated to my lack of writing here?  I've wanted to write; felt I've needed to write, but I have nothing.  I'm holding everything in.  But the weird thing is, I don't feel like I'm holding things in.  I don't lay awake worrying.  I don't think about what-ifs.  I just lay there.  Nothing.

It's true that the Dancing Queen turned 6 a couple of weeks ago, an age I never imagined for her when she was a baby.

And we are now a year out from admitting DQ to hospice, from learning she only had a handful of years left.

Am I depressed?  Am I feeling anticipatory grief?  How can I be?  The Dancing Queen has looked SO good lately.  I know looks on the outside mean nothing, but she just seems to be a little better.

Perhaps denial on my part is hurting me and keeping me from feeling.  I just don't know, but I want to sleep and feel rested.
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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