Friday, June 13, 2014

Somebody Else

"Mommy, I don't want to be DQ forever.  I want to be somebody else." 

Why would you want to be somebody else, sweety?

"I have a lot of pain."

Everybody has pain, DQ.  If you were someone else, you'd still have pains sometimes.

"But, mommy, most people don't have pain like I have pain.  I always hurt."

I looked across the kitchen at the hospice nurse, there for her bi-weekly checkup. We both gave knowing looks.  DQ was right.  Most people don't have pain like her.

I took a deep breath and  gathered myself.

But if you weren't DQ, you wouldn't love music in the same way, you wouldn't be able to sing as well.  If you weren't DQ, you would lose all of the wonderful things about you that make you special.  DQ is an amazing, wonderful little girl with so much light and life.  If you weren't DQ, you would lose that.

She just stood there, crumpled and sad.

If you weren't DQ, we wouldn't have the smile that lights up the entire room.  And you probably wouldn't love pink and ice cream as much.  If you weren't DQ, you wouldn't be able to read to me like you do.

I know it seems like it would be nice to be somebody else because you don't want the pain any more.  I don't want you to be in pain either. But I don't want to lose you and all of the wonderful qualities that you bring to life. I love my strong, sweet, funny, amazing Dancing Queen and I wouldn't want her to be anyone else.

Her shoulders weren't quite so stooped any longer, but the sadness still enveloped her.

The pain was too much today.

Tuesday, June 10, 2014

Funeral Homes

Over the last couple of weeks, I see funeral homes everywhere I go.  I never realized just how many funeral homes are around.  They are everywhere!  And just like everything that is hidden in plain sight, once you notice one, you see them all.

And with each one, I wonder:

Is this the one we'll use? 
How does one decide on a funeral home?  I watched "Six Feet Under".  I don't want a Kroner! But I also don't want those old, dark, smokey funeral homes I remember from my childhood.

How much does  a funeral cost?  How will we afford it?

The hospice team has told me they'd help us pre-plan a funeral, but they will work on our time-table.  How do I know when I should start the process?  I don't want to! What if everything happens as fast as I've seen with others?  

Will they have a pink casket?

Will they play her music?

How does a mom actually say: "yes, please cremate this body that came forth from me, that I held countless hours, that I tenderly took care of, that I loved with all my being"?

By then, of course, the tears are flowing.  I curse the world for putting my baby through this hell and making me have to think of her funeral.

Eventually, I shake my head clean and decide that it is just not possible that my baby will die.  She can't!  There is too much left for her to do, to see, to hear, to dance to.

So, I continue my drive, and then there is another funeral home . . .

Thursday, June 5, 2014


"Mommy, why do I have to take sildenafil three times a day?"

Because, honey, it helps to lower the pressure in your pulmonary arteries--the vessels that bring blood from your heart to your lungs.

She stops and thinks, not quite grasping it, so I ask: Do you know what pressure is, DQ?

"No, mommy."

I gently poke her arm and ask: Do you feel that?  That is light pressure.

I then pressed harder: That is harder pressure.

Now, I want you to think about the hose you use for your sprinkler.  When the water is off, it lays there and you can squeeze it right?  

She nods.

But when we turn on the water, the hose gets hard.

"Yes, mommy."

It is the pressure from the water pushing on the hose that makes it hard.

I pressed on her arm again.

The same thing happens in your arteries that carry blood to your lungs.  They are very small, but your body is so big that you still need a lot of blood to keep your body going. All of that blood needs oxygen. So as your heart tries to push all that blood to your lungs through the small arteries, the pressure gets really hard.

I let that sink in for a moment, then press on her arm again (not hard, but enough that it could be felt).

What would happen if I pressed on your arm with this pressure for a long time?

"It would hurt me, Mommy.  I would have a booboo."

Yes.  What would happen in your lungs if we let the high pressure in your arteries continue?

"I would have booboos inside."

Yes, honey, you would.  Sildenafil helps to lower the pressure and that is why you have to take it three times a day.

She didn't say much else, but from the look of her face, my Dancing Queen understood what I was saying.  My sweet little 6 year old lost a little more of her innocence. 
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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