Thursday, August 1, 2019

Funeral Planning

The Dancing Queen has been in hospice for over six years now. Four or five years ago, the hospice team made us plan her funeral. We had to find a funeral home, talk to them, start saving quotes, music, pictures, but after a month or so, it was done. We moved on. The arrangements were made.

Fast forward to now. DQ is no longer attending school as she is too weak. She is very tired often. So much has been stolen from her; from all of us. We are savoring every minute because it always seems very close to the last. Yet, she holds on, smiles, has fun. It seems like she will be with us forever. This teeter-totter of misery and happiness is really difficult to live with. There is no true planning and much of our time is spent concentrating on the now because that is all we have.

This past spring, as we were beginning homebound life, the "new" hospice social worker (not new for years now, but not the same one we were working with in the beginning) came to the Mad Scientist and I to discuss end of life decisions. We've moved beyond do not resuscitate orders and who to call in case of emergency. No, now was the time for true end of life decisions and what happens next.

We had to read a book on how to respond to things that sound incongruous coming from a dying person's mouth, but make sense to them. We had to think about life differently and help DQ know it is safe for her to move on; for her to die. We had to assure her (and still have to assure her daily) that our love will last for all time, but that doesn't mean she has to stay here with us or continue to endure simply for our sanity. Because, now, she fears death not because of the unknown, but because of what her death will do to those of us left behind. All of the while, we also have to no lose hope and continue to bring life because the end may still be several years away. The balancing act, the fear, the intense conversations, all of it has been just as emotionally draining as those moments in the emergency room or ICU, where I watched her come millimeters from death. The difference now is that we've been living in this intensity for months now without repreive.

After the book and discussions, we had to share our funeral plans with the new social worker. Our "plans" were nothing more than ideas. So, we had to actually plan DQ's funeral. Now that TRex is a teenager and DQ a full-on tween, they also had to be involved. Talk about emotional.

On a Thursday evening in May, my sweet husband had to take TRex to the funeral home where his sister will be laid out. Then, a month later, we had to take DQ to the funeral home because she HAD to see where she would be going. She needed to instruct us on where to place her stuffed animals, how she wanted the chairs arranged, and approve the room where the hospice team will work with DQ's friends on their grief. To say that those evenings were hard is an understatement. The funeral director, owner of the funeral home, who grew up with the funeral home, had to excuse himself when he broke down into tears meeting with Izzy.

That was just the start of the summer. I've had to plan who will be called upon DQ's death. I had to begin an obituary. Caters had to be called, budgets created, email lists created so notifications will be easy to send. DQ was insistent on the email list and she has already threatened that she will be mad at me for the next two realms of her life if I forget to attach the link to her obituary in the email giving notice to everyone (DQ has decided that she does not believe in the Christian heaven, nor in the returning to what we were before birth version of life MS and I believe as anesthetists; she believes in magic and that she has lived for all time in different realms and that when she dies from this non-magic realm, she will jump to another realm where there is magic and she will be queen).

I've had to go through photos to create a slide show for DQ's funeral. DQ and I (probably with the help of TRex and MS) will then pick the pictures to be blown up large to be displayed in the funeral home. We've contacted my florist cousin about getting blue roses as DQ desires. I have several messages out to balloon companies seeking ideas and quotes for blue balloons at a funeral.

I am making tags for DQ's stuffed animals. She wants us to bring all of her stuffed animals to the funeral so that her friends and family can take one home and care for it after she is gone. She is also making teddy bears with her Ma to give to people to remember her.

I created the start of a bookmark to be available at the funeral home for those who come (akin to prayer cards, but not religious). I can't, however, get myself to work on draft program or the outline of the service. We have discussed the service. Decisions have been made. I have songs that must be played. DQ wants to make a video to be played, but I haven't been able to work myself up to completing that project yet. And I can't get myself to think about the actual service.

In the beginning, I set a deadline of August 1 to finish all of the drafts. I've done a lot, but there are a lot more things to go. I'm sure I have completed much more than our social worker expected. I also know that it will only get harder to finish these tasks the longer I wait. The entire purpose of starting now is because each day everything is harder.

How can this be my life? How am I still standing when I feel like every part of my being crumpled in ash on the floor?

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.
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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