Thursday, August 4, 2016

Fading Away

She is fading away slowly. It is agony to watch.

This process has hurt for years, but lately, seeing the slow, steady, horrible decline, causes so much physical pain. I literally feel like vomiting when I see her suffer. I ache to the core of my being.

And that is just me.

She is in pain.

She is slow.

She does not fight as much when she is left out. She doesn't have it left.

That makes everything all the worse for me.

Yet, to the rest of the world, all is fine and as it should be. People simply state "how sad" and then ignore her and me because it hurts to acknowledge reality. And then I ache more because I am so much more alone than ever before.

We are getting more help, but we are drowning. All MS and I do is work. There is no down time. EVER.

I am exhausted physically, mentally, and in every way possible.

And as bad as I feel, she feels so much worse. And I can't help her. She won't let me. She told me last night that she doesn't want me to worry more. And that hurts.

I have nothing left to give, but I have to. I have no choice. I have no choice but to keep pushing forward. I HAVE NO CHOICE.

And if one person says: "you have to take care of you" or any other bullshit like that, I may have to strangle you. That just shows how alone I truly am because you don't know and don't care to try to know. There is no taking care of me while my daughter is dying. I have to take care of her, her brother, my job (because I have to afford care), my house (because I can't afford to lose it), my husband (because I can't afford to lose him). There is no time to take care of me. Shit, I haven't even had a haircut since January. I shouldn't be taking the time for this, but I had to because I need to get some of the pain out. I told her she needs to try to journal or talk to let go of the bad feelings. How can I preach it, if I don't practice.

Tuesday, May 10, 2016


The weight of the world lays heavy on my chest and in my heart. I literally feel it pressing down, each day harder and harder. My shoulders ache, my head is exploding, and my eyes always feel like I just sobbed for hours (even when I haven't). Yes, it could be allergies, but it's not.

The Dancing Queen is declining. There is no getting around it any longer. She is nearing the end.

I can't even believe I wrote "the end".

I don't know how long we will be at this place. I don't know how long "the end" will last, but we've definitely entered a new horrible phase.

The decline is palpable. It hurts to watch. To feel. To think. To hold.

I want nothing more than to protect her and pretend it all away, but we can't any more. She knows. She weeps a lot. TRex knows. He asks over and over why doctors don't do more. He criticizes the glacial speed of research, discovery, and the FDA process. He cries.

We try to make each day memorable. We try to give as much love as possible, but each moment feels so fleeting. There is not enough time. I have so much more love to give, so many more hugs waiting.

I'm not ready, but I have no choice. Each day, DQ eats less, sleeps more, and is always so very exhausted and in so much pain unless we give her strong meds (which we do routinely now). We can't even pretend that she can do normal 8-year-old things any longer. When we do acquiesce to her demands for normalcy even for a short time, her body is left weaker. It takes longer to recover.

I knew this was coming--the inevitable turn in path we started down years ago. I knew this would hurt in way I could never imagine. But this hurt is so much worse than anything I have ever encountered; magnitudes of order worse. Yet, I'm only at the beginning.

So, yes, when you see my girl, you'll think she is tiny. You probably won't be able to see the ribs that show through her delicate skin. You'll assume the deep bags under her eyes are from lack of sleep. If she doesn't eat around you, you'll say its because of all of the fun she is having and kids never eat when they are with their friends. Or you'll see her gobble half a scoop of ice cream and assume that is dessert, when it really was my desperate attempt at getting her some fat. You'll notice the bruise and think she bumped herself a couple of days ago, not knowing she heals very slowly now and bruises last weeks. You'll pretend everything is okay because that is how we try to be. But it's not okay. It won't be okay ever again (if it ever was).

I don't expect anyone to have answers and I don't expect anyone to know what to say if they do notice my sweet vivacious girl is slowing down. It's okay. There is nothing to say.

Friday, February 26, 2016

What a week!

I can't even believe what a shitty week this has been.

It started last weekend with so much work that there was no time for much of anything except more work! DQ was so bad too. she was misbehaving non-stop. MS and I were both at our wits end. Seriously, DQ spent more time on her room thinking about her behavior than anything else.  Do you know how hard it is to get through to a child in pain that she can't treat everyone around her badly because she is in so much pain?!?! It took hurculean will to deal with her and we still lost.

Monday came and DQ had an appointment with a neurologist in hopes of finding relief from abdominal migraines. The problem was that DQ got a migraine, complete with many rounds of vomiting as we tried to leave. We were late and then DQ vomited many more times in the reception waiting room.

Two hours later, we left the doc with more meds and a lot more questions, including the possibility that DQ's debilitating migraines may have been brought on by sildenafil. I raised this idea years ago , but was told "no, sildenafil doesn't cause stomach ache." After talking to the neurologist and researching on my own Monday and Tuesday, I decided on my own that  it is likely sildenafil has caused this excrutiating pain for the last 2 years!

And the guilt hit. If I had researched more two years ago,  could I have ended her pain earlier?

While I had my epiphany, DQ was still in mountains of pain and thus behaved horribly. At therapy Monday night, MS and I discussed how her behavior was hurting us. It was raw and painful, but we came to some decisions as we drove home to better address her pain and keep us sane.

We got to try it out as soon as we walked in the door as DQ was fighting with my mom.

Tuesday morning, DQ fought more.  I got her to school, but it was not easy. And at 11:00 am, school called because DQ had a nosebleed that led to a migraine. DQ asked to take a nap then and did so until MS could get there. DQ had missed so many days of school already because of pain, then this. My head couldn't help but think we'd have to pull her from school if no answer was found to the migraines.

By 1:00pm, MS was there to take DQ to the dentist (a horrific experience on the best of days). Then the dentist tells DQ she must give up her pacifier because her teeth are showing signs of its use.

Needless to say, DQ did not take the thought of losing her only comfort item in this cruel world very well. Neither did I. I sat there, thinking of my sweet little girl, in so much pain (that may have been caused by medicine I gave her), and we were supposed to take away her only comfort item--her only tool to make it through needle pokes, migraines, and nightmares! I was angry and sad.

Thankfully, after crying quite a bit, our PCP said the dentist was crazy and DQ got to keep her pacifier. Her comfort was and is more important than orthodontia she is not likely to ever get!

Drained from all of that, we had a snow day. I was staying with the kids trying to work,  when I realized I typed a deadline wrong.  I had a brief due on the snow day and not the next day.  I had to draft it all and file it while addressing the needs of the kids!  WTF! I never make those errors,  but I did with that day!

Thankfully,  MS came home early to help. Just as I hunkered down to finish, the cardiologist called. I was calm during the call. I took it in stride. But as you already know, it broke me.  I mean how screwed up is it to get a phone call that made me hope I was giving my daughter toxic levels of digoxin. SERIOUSLY, HOW SCREWED UP IS MY LIFE TO HOPE MY DAUGHTER HAS TOXICITY!!!

After migraines, sildenafil, loss of pacifiers, fighting, emotional trauma, and work deadlines making life hell, I certainly didn't need toxicity or the worse alternative in my life. Our lives. I'm ready for some good news if only the universe would conspire for good and not evil.


You get bad news often enough, you prep for it. You're hardened. Start thinking: "Bring it on; I can handle anything."

But I can't.

I can't handle most things. In fact, I've been broken so many times, it is a wonder it is possible to break me any longer. Yet, here I am shattered into billions and quintillions of pieces.

I don't know if everything is wrong or nothing.

DQ wore a holter monitor last week for 48 hours. It wasn't the first time she's done this. Hopefully, it won't be the last.

The cardiologist called yesterday. Three years ago when DQ did this test, she had 261 PACs--premature artial contractions. Everyone has those. They are no big deal. But, last week, she had well over 10,000 PACs. I think the word was 10,800 or 10,600. What I KNOW I got right was that 3.8% of the time, DQ is having PACs. This is not necessarily a concerning number in and of itself. It is quite a change though.

Three years ago, DQ had no PVCs--premature ventricular contractions. Last week, she had 51. Again, not that big of a deal.

BUT, DQ had 6 times with 3 PACs in a row and a couple times with 2 PVCs in a row--cuplets. Those could be something. Those are a heartbeat away from dangerous tachycardia and other horrible things that could happen. That I can't type.

But, I think it all.

The cardiologist's first thought was DQ's digoxin dose may be off and she has toxic levels now. We are trying to get her blood tested ASAP to find out. Hopefully, that can be turned around quickly and get her back into a better rhythm. Hopefully, that leads us to an easy answer.

But what if it doesn't?

It hurts to think what could happen and I can't stop myself from thinking.

Tears have been flowing all day.

People walk into my office and  I try to wipe my face, but it's no use. I'm just a mom with a child in hospice, given bad news. And once again, we're in limbo land with no answers and so many scary questions.

This may be a blip, but it could be so much worse. And I'm broken.
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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