Thursday, August 16, 2012

Beneath the Surface

It hides beneath the surface where nobody really sees.

She runs, she plays, she dances. She can't be sick.

But were you really paying attention? She stopped well before the other kids and started talking to you and making you forget she can't keep up. It's called a coping mechanism. She uses them all of the time--even when her physical and occupational therapists are testing her.

She is smart as a whip and will convince you to do something else if she can't keep up physically.

Heart disease is a silent killer.

Pulmonary hypertension is very well disguised.

All of it lethal.

If you don't pay close attention to every detail, you'd miss the decline.

Yes, she is sick. She hides it well. Don't hold it against her.

Wednesday, August 1, 2012

It's Not Her Fault

I can handle it most of the time. I don't break down. Really. I stay calm.

But, I always hold my breath when I have to ask questions like "will it be a problem if my daughter needs to wear a diaper at nap time?" Upon hearing the answer "we're not licensed for that", I try so hard to hold back the tears and not let the person on the other end know they cut me to the core.  When I explain that she needs diapers because she sleeps so hard due to the shear exhaustion of standing upright and being a kid with so many physical hurdles to overcome, they sympathize. But . . .

. . . we're not licensed for that.

Potty training has been an ongoing process with the Dancing Queen for years. She wants to be big. She wants to use the potty, but it is just so hard for her. I've talked a lot about DQ's eating problems. Well, those are nothing compared to her potty problems (and the potty problems most likely add to the eating issues).

DQ wears a diaper to bed at night. She hates it. She wakes up every morning and says "Mommy, I think my diaper is dry today. Can I wear underwear to bed tomorrow?" And everyday, I have to tell her "No, honey. The diaper is wet. You take lasix right before bed. It is really hard to hold it all night when you take diuretics." And she sleeps so hard, she never even realizes she pees.  I try to let her know that it's okay; we all understand. But, she gets sad every morning nonetheless.

And while DQ wears underwear when awake full time these days, she still has accidents. There have been more weeks this summer that DQ hasn't been permitted to swim on swim day than there has been weeks she can simply because her body doesn't work in the way it should.  DQ wasn't born with the muscles that all of the rest of us have. She had surgery as a 3 month old to help, but it's not the same. She faces pain ever single day. And recently, she started to face ridicule as well.

And because using the potty has caused so much torment in her little life, DQ revolts against it, making the process all the worse. She fights us constantly as we remind her to use the potty. "DQ, you took lasix an hour ago, you need to use the potty." And she screams "I DON'T HAVE TO! I JUST WENT!" But, if she doesn't go just in case, there will be an accident. It's not her fault. You try taking the highest dosage of lasix a day for your weight and see how quickly it creeps up on you.  We have to remind DQ every 15 minutes to use the potty after lasix. But all she sees is that we remind her and not her brother and not the other kids at school. Why is she the one singled out?

And don't even get me started on the other medicines she has to take and the harsh reality that comes with them. My poor baby feels like she is doing something wrong because the medicines she desperately needs to help ease the pain, present huge obstacles to overcome for most people, let alone someone with the equipment the medicine was designed to work for. DQ wants to be big. She knows what she has to do, but her body betrays her.

Why can't people understand?!? Why don't they help her? Why do I get so angry at times? IT'S NOT HER FAULT!

And, yes, there are times, she does it on purpose. I don't blame her for that either (at least not at this moment). If you were constantly being punished for doing something you couldn't control, wouldn't you do it on purpose every once in a while so that at least there was a reason to be punished?
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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