Compassionate Care

If you don't follow DQ's carepage and you don't know me in real life, you don't know that we were forced to decide a couple of weeks ago if we wanted to pursue heart-lung transplant for DQ or choose compassionate care. After weighing everything, we chose to stop fighting DQ's heart defects and choose life, allowing her to be a kid, doing kid things for as long as possible.  It is the only choice that made sense for our family and the goals we set for DQ's life all along.  DQ was officially admitted to hospice yesterday.

Now that we are no longer searching for answers and hoping for "fixes", life has been utterly calm; almost eerily calm.  I think a lot of that has to do with the drop in endorphins from always pushing for the answer.  We've been in emergency mode for over five years and suddenly, we're supposed to just live.  It is very weird to get used to and we don't really know how to live like this. We go through the motions, spend a lot more time snuggling and having fun, but there is a giant sadness that envelops us and rears its ugly head without notice, rendering each of us catatonic, weeping, or raging, depending on the day and the direction of wind.  We are working through it all together though. And, thankfully, we haven't all broken down at the exact same time, so there is always someone stronger to help us through.

TRex  has been mostly silent, but he is always thinking about his sister.  He is concentrating on the practical aspects.  For instance, this morning, we discussed how little DQ is and she asked if she would be taller than me when she grew up.  TRex responded "you won't live 10 years DQ, so you'll never be taller than mommy."  How am I supposed to respond to that?  She probably won't live 10 years, but I don't want her to give up as if it is inevitable.

Two weeks ago, as we sat at dinner eating homemade, gluten free corn dogs, TRex declared that when he was an adult he was going to the zoo and eating real corn dogs because DQ wouldn't be with him.

And around that same time, he let us know he was discussing DQ's prognosis with his classmate.  I can just imagine the surprise on the other first grader's mom's face if he brought it up to her! It is too bad I know only one other mom at the new school, so I couldn't warn her in advance.

DQ on the other hand, is terribly worried about being alone after she dies.  She is afraid we will forget her and will no longer love her. (Of course, we let her know our love will never end, even at death.)

The Mad Scientist remains the solid, unwavering man most of the time, but does allow himself moments where reality sets in.

Me . . .  I don't know.  I've been angry at times.  I've been very tired, but I don't think that is depression, but more closely related to inadvertently ingested gluten.  Mostly, I'm not sure what to do with myself.  How do I just sit back and let heart disease steal my baby?  I'm not sure how to not fight.

Sleepless

I've never been a good sleeper.  In fact, I am the biggest loser of sleep.  It would take me hours to fall asleep even as a child.  I had no idea that people actually fell asleep within minutes of laying down. I simply assumed it took hours for everyone until I moved in with the Mad Scientist.  He even used to try to teach me how to go to sleep. It never worked.  I could never turn my brain off. Laying down was usually the first point in the day that I had just to my thoughts, so I would think. I couldn't stop myself and it would keep me awake.

Lately though, I'm not sleeping, but this type of not sleeping is different. I stay up late, despite being desperately tired. I just can't get myself to go to bed. I tell myself I'm too tired to climb the stairs.  But that's not it really.  I sit and watch brainless television or play ridiculous games until my eye lids are so heavy they can't possible stay open. And then, I climb the stairs and fall into bed.

Last night was even more ridiculous than normal. I had only about three hours of sleep the night before because DQ had been up off and on coughing (she has bronchitis).  All I wanted to do for the entire day yesterday was take a nap, but I couldn't.  There was too much to do.  The Mad Scientist and I ate dinner around 8:30 as our norm. At 10:00 p.m., he went to bed. Despite having almost fallen asleep on the couch watching tv, I stayed up. It hit 11:00 p.m. and I still couldn't force myself to go to bed. Finally, at midnight, I got up and went to bed, thinking the only way my eye lids could stay open was if I used toothpicks. I could barely get myself up the stairs.  After kissing TRex and DQ, I laid down and fell asleep immediately.

I was so angry with myself this morning--blaming my exhaustion on staying up playing Candy Crush Saga and Ruzzle. When I dropped TRex off at school, all I could think about was "how will I make it through the day?" When we walked into the building, one of the dads asked where DQ was that morning.  I explained that she was home sick with her daddy.  The dad responded "I hope she gets better soon." and went on his way.

As we made our way to the cafeteria where TRex attends the before school program, he asked me when DQ would get better. I replied "her bronchitis should clear up in a week or two."  He insisted that I go further, asking me "But mommy, when will she get all better?" Of course, I had to tell him she wouldn't. He was sad and clung to me tight as I said good-bye.  He didn't want me to go.

The woman in charge of the before school program asked if TRex was alright. I told her no, but he would be. I had to explain further since I wanted him to feel safe when I had left the building. In my tired state, I told her that TRex wanted to know when his sister was going to get better, but she's dieing and there is nothing we can do. I sobbed in the middle of the elementary school cafeteria, all the while trying to hide it from TRex.

As I drove away, instead of listening to the news, I was left alone with my thoughts. "How could I say DQ was dieing? What made me cry in the middle of the cafeteria? Why can't I keep my faculties in check?" I screamed at myself: "THIS ISN'T ME!!"

I then started to bargain with myself. "If only you weren't so tired, you would have held it together. If you hadn't stayed up late watching stupid tv, you would NOT HAVE CRIED IN THE CAFETERIA!"

In yelling at myself though, I realized none of it is mindless games and late night tv. I don't want to think about my baby possibly dieing. I didn't want to do it in the cafeteria and I don't want to do it at night. I don't want to think about it!  But late at night, unless I'm too exhausted to think, I do think about it. I can't help but think about my sweet, sleeping children, happily dreaming in their beds and how reality is hurting them.  When I don't pass out from exhaustion, I can't help but think about DQ's upcoming Pinkalicous birthday party and how this might be her last birthday. My mind won't let me escape the worry over how to help TRex and DQ cope.

But, if I stay up way too late, doing nothing but occupying time--doing the trivial and meaningless--my brain will focus on something other than my thoughts and feelings.   If I force myself to stay awake doing something, anything until I'm certain I will fall asleep immediately, I won't have to think about what I don't want to think about.

So, I'm exhausted due to lack of sleep. I have many nightmares when I do sleep. And, in the light of the day, I'm not emotionally prepared to deal with questions or things that come up because I won't let myself ever think about my feelings about DQ's prognosis.

But now I know and I can begin to work toward a healthier way to deal with it all.

Dragon Mom

Dragon Mom.

DRAGON MOM.

Am I a Dragon Mom?

I heard the term "Dragon Mom" for the first time almost a year and a half ago when I read a poignant op-ed in the New York Times by Emily Rapp.  A Dragon Mom is quite the opposite of a Tiger Mom; she is the mom to a child who will die young and she knows it.  There is no stopping the inevitable, so parenting becomes more about sharing love, smiles, and now, rather than creating building blocks for long-term success.

When I read the op-ed, it stuck with me.  I had of course heard of Amy Chua’s “Battle Hymn of the Tiger Mother” and read articles about it. But I knew that wasn't me.  I knew then that I was more closely aligned with the Dragon Moms than I was to any Tiger Mom.  I even wrote about how I was not a Tiger Mom in a January 2012 post right here on this blog.

But, I clearly remember writing that blog post and thinking "should I add in my thoughts on where I fit as a Dragon Mom?"  The problem was that I felt an affinity to what the Dragon Mom was saying and feeling, but I still had plans for the Dancing Queen. I was still holding out hope that DQ would have a future. I felt conflicted at that time about not wanting to be in either world. In the end, I only wrote about not being a Tiger Mom. I took the easy way out by ignoring the giant elephant in the room.

I realize now that didn't write about Dragon Moms then because I was protecting myself.  I didn't want to admit out loud that part of me associated very closely with being a Dragon Mom.  I mean, how could I think my daughter won't make it to adulthood?!? How could I give up on my sweet baby? How could I not fight with every ounce to get her to adulthood? Wasn't I told all of the time how far medicine has come!?! Isn't my job to do everything in my power to keep her alive into adulthood!!! If I admitted that part of me felt like a Dragon Mom, wasn't I saying that I didn't believe my daughter could ever grow up?!?

And now we've been told that the Dancing Queen will not make it to adulthood.  She won't grow up.

Does that mean I should become a full-on Dragon Mom? How do I know what to do? None of the doctors can tell me what to expect. Does she have a year? Two? Five? Nobody knows how quickly she will decline.  All they know is she will decline and that she won't live to be an adult. The Dancing Queen still has to be around other people. She will still go to school.  I can't let her do whatever she wants and become a brat.  It is hard enough on her now thinking that no kids want to play with her because she can't keep up.  And I can't very well let her eat whatever she wants for dinner either--that can cause her to decline more quickly and be in frequent pain. 

How can I help her enjoy life as much as possible and live every moment to the fullest while still letting her be part of society?  Where is the proper middle ground? How do I know what is best? Where's my self-help book--Raising Your Terminally Ill Pre-Schooler?

Fuck it all! I don't want to be a Dragon Mom!

Is this my life?

I walked into the garage Tuesday morning and TRex and the Dancing Queen were fighting. DQ insisted the Mickey was going to die on Wednesday. His heart was sick and the doctors had nothing more they could do, so Mickey was going to die.  DQ was devastated.  TRex was fighting with her, telling her "NO! Mickey is not going to die. The doctors keep researching and they are going to find a cure. You're wrong DQ. You can't be sad. Mickey will not die tomorrow!"

This morning, I had the following conversation with DQ:

Mommy, I'm sad.  People have been hurting my feelings and I feel sad.

"What have people done, Dancing Queen?"

They hurt my feelings, Mommy.

"How did they hurt your feelings?"

They said I'm going to die. And not die as adult like everybody else. They said I'm going to die as a kid.

"Who said that DQ?"

I don't know, Mommy, but it hurt my feelings.  I'm very sad. I don't want to die.

How can I explain life and death to an almost 5 year old and a 6.5 year old? Why should I have to help my daughter understand when the doctors tell us that they are going to do nothing more to help her feel better; that they're not going to fix her heart; that they don't know what to do?

Monday night, that is exactly what we were told.  DQ's heart will continue to go into worse heart failure and the doctors do not know how to make it better. They don't know how to save her. They know she won't grow to be an adult.

TRex was with me when I learned this news. He heard it all. We had to explain to the kids before we could comprehend everything. Why should I ever have to explain this?!?

I hate congenital heart defects!