Monday, November 27, 2017


The Dancing Queen gave up earlier this year. She wasn't trying. She wasn't living. She wasn't doing anything, except lying to us to play video games and watch tv. She had decided it was easier to stop living than face losing everything. If she gave up on her own, there would be less to feel bad about when she died.

No, she didn't tell me all of this, but I knew it.

She had given up. She had admitted to lying to us to leave school. She didn't want to do the work of 4th grade when she didn't feel well. So, instead of trying, she let herself concentrate on how bad she always feels and left school every day.

I had to pull up my big girl panties and make her stop. I had to tell my dying daughter that she couldn't give up. She had to stop concentrating on how crappy she feels and concentrate on living--even if that meant learning multiplication tables and long division! I had to yell at her and ground her and force her to face reality that she wasn't being kind to others or herself. I had to threaten to take away Christmas presents and keep her from tv for a week. She still hasn't earned back video games.

How can I take these things away when they help her smile? We don't know how long she has. She could go into a funky heart rhythm and not get out in time and she will be gone and her last days will have been spent grounded and fighting with me.

Then again, her rhythms may stay okay or at least correct themselves quickly and she could live another ten years. If so, she needs to live--really live; not this half-life where she has already given up. I can't let her do that.

How do I know the right answer???

What am I supposed to do!!!!

I grounded her. I forced her to face the reality that she was giving up on herself. I made her realize how selfish and mean she was to all of us and made her feel bad. I can't have her being a jerk for the rest of her days. But all the while, I was thinking that she deserves to have fun. She deserves comfort. Fuck multiplication!

But my tough love lesson sank in. She wants to work hard. She wants to try to get back on track. She heard me loud and clear. She doesn't even know if she deserves Christmas presents yet (though, you can be sure, she wants them). She is trying to change for the better.

With all of that comes huge anxiety over how she behaved before. DQ basically missed the first quarter of 4th grade and is terribly freaked out about catching up. She was so worried about how she will get the work done that she was in tears this morning. I asked her not to worry. I told her she is not in a race with anyone else and that it might take her longer to learn, but I don't care as long as she is trying. I just need her to try. I can't have her giving up. How can I teach her to embrace life and not give up? If she gives up, she will die sooner. I know it. Yet, she is so stubborn. I can't get through to her to get her to try--to live--without making her realize her errors before and then the ANXIETY. She has no balance. It's all or nothing. I had to give her valium just to get out the door to go to school this morning.

I just want her to try and stop giving up. Please stop hurting yourself, baby girl.

Saturday, October 7, 2017


I learned a long time ago how lonely it is to be a special needs mom. As they say happens whenever tragedy strikes, I quickly learned who was there for me and who was not. I grieved way back when for the losses I felt-- lost friendships, lost family, lost innocence.

I also had to learn something nobody mentions about tragedies: the cruelty of others. People love to kick you when you're down. I was told DQ's disabilities were my fault and punishment for my life choices. I was blamed for her dying. 

I learned to live with the pain and abandonment. I found new support systems. I moved on.

Or so I thought.

This week, the abandonment and cruelty of others is hitting harder than it has in a long time. Years even. Perhaps, it hasn't felt this acute since DQ was an infant.

I find myself wondering why people are so cruel. Why I deserve to be treated badly. What I did to be ostracized. 

I would love to scream "Fuck you all!" to those who are hurting me and mean it. But, instead, I sit broken and alone. Perhaps it's the last crack in my dam and not this specific cruelty, but I haven't stopped crying all day.

I am human.

Fuck you all :(

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.
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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