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.

Thursday, January 16, 2014

Not Strong Enough

I'm not strong enough.  I feel myself breaking a little piece at a time. And I'm sure there will be nothing left after a while.

We had the Daisy Investiture Ceremony last night for the Dancing Queen.  There were three babies there, from itsy bitsy at a couple of weeks old to about 6 months and then just learning to toddle.  Juxtaposed against the group of kindergarten girls running around and having fun, with the big brothers in back playing video games, a giant wave of nostalgia overcame me.  My babies have left me and each day they grow more and leave more.

Later, I stared at photos of my chubby little TRex and decidedly not-chubby baby DQ.  I cried and cried.

Every parent faces this.  We are raising our children to be strong enough to go out on their own--to leave us. But, most of the time, parents still get to see their children after they've grown and gone.  But I'm raising one of my children to leave me forever, while still letting her plan her future out of my home, living.  This ridiculous balancing act is so hard.

The situation always hits me harder when the doctors actually agree with me that DQ continues to decline.  She will be started on a new med this week to help with her symptoms.  I can handle sick.  I can even handle the effects of the decline.  But the more she declines, the closer I am to never being able to hold her again.  Never hearing another good night song.  I cannot handle that thought.

She has a sinus infection this morning and wanted to go back to bed.  Ten minutes later, when she hadn't fallen back asleep, she cried and cried for me because she was afraid in the dark.  She never wants to be alone.  How can I leave her alone? In the dark? She gets so scared?   And as much as I know at death, you are gone, just as you were before you were born, I don't think I will be able to leave her alone.  She is supposed to stay with me!!!!! I'm supposed to protect her. And I can't. I can't. I'm not strong enough.

Friday, December 27, 2013


How was your holiday?  A simple enough question.  Harmless it would seem.

And while my holiday was lovely and the kids were so excited, the question is not harmless and I dread it.

Every mom wants Christmas to be perfect; wants everyone to remember the magic of it all.  But knowing this could be the last Christmas put so much more pressure on me.  I wanted everything to be a memory--wonderful images that will stick for eternity.

Alas, somethings just aren't meant to be . . .

Every morning, the Dancing Queen awakes with sobs.  Every day, no matter how easy we take it, her eyes have deep, dark circles.  Each moment, we are closing in on one year gone.

Last year at this time, we were freaking out about the potential for another surgery.  This year, I would give anything for a life-extending surgery.

How is it possible that I love her more every day?  Haven't I loved her with all of my heart for as long as she's been with me?

And TRex, he grows to be such a good boy, yet there is a sadness about him as well.  I can't stop any of it.  How can I not stop any of it!

The Dancing Queen has begun to fight me with taking her medications.  And the other day, she insisted that one day without them would do no harm.  I tried to explain how very important it is to take her medications as prescribed; how they keep her alive.  Her response will likely haunt me for a very long time: "But, Mommy, I have to die someday."  She looked small as she said it, sitting across from me at the breakfast table.  She wasn't in her booster and she was just so small, yet so wise.  "But, Mommy, I have to die someday."  Baby, we want you to stay around as long as possible.  I almost begged her to take the meds, panic about to take over, when she simply picked them up and downed them.
It's been almost a year since we were given the hope of 3 to 5 years.  What will the next holiday bring?  Will she still be as active?  Will life resemble anything nearly as good?  Will it better?  Will it be worse?  How can I hold on to today just a little bit longer?  With all of these questions swirling about, my holidays have not only left wonderful memories, but I am wounded as well.

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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