Letting It Go

I started this blog so many lifetimes ago. I'm not sure it can be called funambulism for beginners any longer. I surely am no beginner. I no longer have small children and I mastered funambulism of life long, long ago.

And who writes blogs any longer? When this was started, I didn't know about social media and blogging was the way to connect to the world outside my living room. 

I no longer crave that connection to other adults that was missing because my kids were small, one was sick, and I felt siloed in a world of work and child care. But now, in a world full of instant online connection, I find I'm missing the catharsis of writing down my thoughts and feelings and letting it go into the ether. I don't care if I connect with others. I just need to let it go.

Our amazing Dancing Queen died ten months ago yesterday. There is a not a waking moment since then when she is not with me. I may be taking a deposition, but she is sitting in the room with me, wondering why I am worried about these boring corporate things.

I only read and listen to stories I think she would love.

I feel like Taylor Swift's "Tortured Poets Department" was written for me because it is just so filled with sadness and anger and sung by my girl's favorite. Even though the songs are about hearts broken in romantic entanglements (not due death), I listen to it constantly, even when no music is playing.

I'm drawn to all of things that the Dancing Queen loved. I came inches away from buying a sweater today simply because it had a fox on it. My girl loved foxes. I'm not sure I'd ever wear the sweater, but I want it because my girl would love it. It's still in my cart, waiting for me to check out.

Yet, I cannot read her stories. The Dancing Queen was a writer. She has literally hundreds of stories or parts of stories saved in her google drive. I promised I would help publish those for her after she was gone, but I've only done a handful so far because it is too difficult to read her words. I feel horrible that I can't do it yet. I know I will get there, but it is so hard to even fathom having the ability to read them without her nearby to share the experience. Maybe putting this out into the world will help me forgive myself for grief postponing promises. I know my girl wouldn't fault me.

On top of all that, TRex is away at college now. We have an empty nest. There no longer is anything to balance. All I can do is hope that I parented him well enough to make wise choices now that he's an adult and be humble enough to realize when he needs help if he didn't make the wise choice or the choice is unclear. Sitting back and letting him make those choices is so hard. Not knowing what he is doing, who he is meeting, if he is adjusting, is so hard. All of it makes me crazy nostalgic for those harried days when he was little, telling me about pachycephalosaurus, reciting movies at night, or reading "Horton Hatches an Egg" for the ten gazillionth time.

I miss my boy. 

I miss my girl.

"Normal"

We have junk drawers and dirty dishes; play video games; balance two working parents, watched class performances, concerts, and plays; attended Cub Scout meetings and Brownies, kissed wounded knees; gotten overly tired at the zoo; had to carry a screaming toddler out of a restaurant; punished a sulking, snotty teen; cursed the school pick up line of cars; delighted at dandelion bouquets; read thousands of stories; drank hot chocolate after playing in the snow; left the laundry in the washer so long it had to be washed again before it was dried; took road trips; and laughed a million and more laughs. We've been parents for over 15 years now if you count pregnancy. We have done it the best we can. We are no different than most parents. 

Yet, we are not the same as most parents either. We were given the option to terminate our second pregnancy due to genetic condition; watched that same child come too close to death on several occasions; flown across the country for second (and third) opinions when no options remained at home; handed our child over to surgeons who stopped her heart and we didn't know if it would start again; rejoiced in her recovery and broke into a million pieces when she declined again; made the decision to stop treatment; lived for 8 years with a child in hospice; broke into millions of pieces again and again and again, each time putting ourselves back together, but never quite the same.

Several years ago (five maybe six), the Mad Scientist and I had to start working from home several days a week because DQ could not stay in school all day. She was needing to come home frequently. About four years ago, we took our last vacation and had to leave early because DQ was too tired to stay the entire time without her hospital bed. Two years ago, DQ officially became homebound even though she basically had been for some time. A year ago, the pandemic hit and we were all homebound. Shortly after that, DQ became basically bedbound.

Life is hard for the entire world right now. It is so hard for us. We have zoom school and remote work, we wear masks, social distance, and have all fingers crossed that covid stays away, but that is a backdrop to our life.

Pain is ever present. We are constantly trying to find a way to alleviate DQ's pain. We were told by hospice last week that there are simply going to be times when she will have pain. That should never be the answer and I'm glad that wasn't told directly to DQ. She needs to believe we are doing everything we can to alleviate pain. It is our daily struggle. It only becomes the more apparent on days like today when she wakes up feeling good. I am able to step back and see where we've been. I still think of myself as the typical parent, but when I am able to unclinch for a minute, when she feels good, I realize that I am not typical. Nothing of our life is typical. 

All I want for my children is to learn, find themselves, and enjoy life more than they dislike it while helping the world more than hurting it. How do we create a "normal" childhood, complete with silly internet videos, fun day trips, and family games, when pain, exhaustion, and nausea are an ever-present companion? That is the question of every moment, even when not spoken. We take normal childhood in slices, I guess. Perhaps a better descriptor would be nibbles of normalcy. I want to give more than a nibble though. That is not possible. And do I really want it? If we get back to "normal" will that mean DQ is gone? If so, nothing will ever be normal again. Fuck, this is hard.

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?

:(

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.