You Don't Know

It seems that I only come back to this blog these days when life is too hard, too messy, too much.  I think that is okay.  I created this outlet because too many people judged my feelings and my choices when I posted to the Dancing Queen's carepage.  I wasn't allowed to worry.  I wasn't allowed to question "what if".  I wasn't allowed to worry about other children dieing.  All because it made friends and family uncomfortable with the thought that the Dancing Queen could also die.  I was told that I shouldn't put my energy into strangers I've met on the internet because it only made me sad and introspective.  But, the thing is none of those same friends and family have any true idea of what I go through.  And when I tried to open up, I was shot down and told "don't worry."  Who are you to tell me not to worry? Are you responsible for trying to find an answer? Have the doctors told you they can't do anything? Have you sat in the room with a surgeon minutes before your daughter was going to have her third open heart surgery to be told they would NEVER be able to fix her main problem?

And now, years later, the Dancing Queen appears so well that when I say I'm concerned that the doctors won't be able to help her, I get the same thing--it's no big deal; she looks great! That's all fine and good, but I watched her today in swimming class.  She isn't strong enough to lift herself off the side of the pool to slide into the water.  She tired from walking the 15 feet of the pool, so much so I thought she might collapse in the middle.  She can't keep up, no matter how hard she tries.  So, yes, she looks good, but you don't know what you're looking at!

For the past several weeks, we have been in the process of getting more information as to why I've seen DQ decline over this last year.  The cardiologists found a significant problem.  They told us they could fix it. Then they said they can't.  Now they are saying they might be able to, but won't tell us how and whether it will require another open heart surgery.  Or we just might have to let it be, which will only make things worse. So much uncertainty, but she looks good. Heart disease is a silent killer! You can't see it lurking beneathe the surface, but you pretend all is fine.  It's not you who has to look for minute differences.  You're not responsible for keeping her alive!

You're not the one who has to pry her little body off of you when you drop her off at school in the morning because she doesn't want to stay where the other kids get to go outside and run and she can't.  You don't have to remind her that the cold air makes it difficult for her to breathe and that is why she stays in.  But, she looks so good.

And you've never had to explain to a 4 year old that it wasn't likely to get better.  You didn't answer the questions: "Mommy, when I'm a mommy, will I still be sick?"; "When I'm a mommy, will I still not be able to play outside?" Did you have to explain to an almost 5 year old that her heart and lungs were the best they would ever be, so when she was a mommy, it would probably still hurt to be in the cold.  Did you grasp for some silver-lining for her; promising that as a mommy, she'd be able to make her own decisions and could go outside if she wanted. And all the while, you begged yourself not to cry because the likelihood she will ever be a mommy is so very slim.

I know she looks good to you. And I know she is much healthier than she was at 2.5 years old, but she not quite 5 and is doing worse than at 3.5.  Instead of getting stronger, she is weakening.  Instead of being able to walk farther, she is traveling less.  Don't let the smile fool you and don't discount my genuine worry.  You have no idea because you won't look past the surface.

Mickey is Dying

I was sitting at my computer, losing myself in a little Pinterest before dinner on New Year's Eve.  The Dancing Queen walked in, Mickey Mouse in her arms.  She had the saddest look on her face.

"Mommy, Mickey is very sick.  He may die.  He needs to go to the hospital."

I asked her, "Has he gone to your clinic for a checkup, yet?"

"No, mommy. He is too sick. He must go to the hospital.  Will you make it?"

I got up and went directly to the basement to build the hospital.  It had been waiting since Friday night when DQ got it as a gift from her aunt and uncle (the Editor and Car Guy) and I had to help save my grandmouse.

As I popped out cardboard holes, cut doors and windows, and folded tabs, DQ and TRex discussed the seriousness of Mickey's situation.  He needed a cardiac MRI at midnight (it was New Year's Eve remember).  Mickey was very concerned about the procedure, but DQ consoled him:

"Mickey, I know you are scared, but mommy is here.  I'll have to leave you when you go back with the doctors, but you need this.  You are going to die if you don't have your MRI.  The doctors will take good care of you until mommy can get back."

I asked DQ why she thought Mickey would die if he didn't have the MRI.  She said "Mommy, Mickey's just like me!"

"But, DQ, you're not having an MRI because someone thinks you are going to die.  You're having that done so the doctors can get better pictures."

Very seriously, she turned to me and said "Mommy, when you have an MRI, they put you to sleep. Sometimes, when you go to sleep, you don't wake up."

We discussed how scared she was to have an MRI on Friday.  I tried to help calm her nerves--tell her it is just like an echo cardiogram (which she thinks is fun), except she would be asleep.  I told her that the Mad Scientist and I would be with her, we'd bring Mickey and Lamby, her pacifier, and her computer full of movies.  She seemed to be okay, but then TRex said it was time for her to go to the waiting room as Mickey was going back to the MRI.

DQ held her baby close and told him that she loved him.  She promised he wouldn't be alone--that the doctors and nurses would take good care of him while she was waiting for him and as soon as she could, she'd be with him again.  She let him know it was okay to cry if he needed to and that she always loved him.

Luckily, the Mad Scientist saved me at that point by requesting that I help with dinner.  Otherwise, I would have had other things to explain.

I don't know whether to be sad or happy. I mean, I know I am happy that DQ seemingly understood what I was telling her, but so very sad to know she has to understand at 4.5.

Thankfully, today, I've been informed that "Mickey's heart is good. . . . Every day his heart bothers him, but today Mickey's heart is good."