Friday, May 23, 2014

Disability Parking

Gosh, was it a month ago? Three months ago?  I don't remember. No matter; quite a while ago, we started the process of getting the Dancing Queen a handicap placard for the car.  There are just times she can't walk far and we end up carrying her.  She is getting heavier now though and we can't carry her far, so we needed to be able to use handicap parking.

I filled out the top of application and the hospice team filled in the rest.  And then the application sat in my kitchen waiting for me to make the trek to the Secretary of State's Office.  I never had the time to stand in line.  I couldn't find a way to fit the SOS into my schedule.  (Or perhaps I didn't want to think about my daughter being disabled.)

Then, we had the day where DQ was tired and I had to carry her to the car.  I didn't have the strength to carry her the entire way and she cried.  Earlier this week, DQ got winded and started coughing walking into school.

I no longer had the option of waiting.  So, this morning after dropping the kids off at school, I went to the SOS's office.  I stood in line.  I sat in the waiting area.  All of it no big deal.

I walked up when my number was called.  I handed over the paperwork and said: "I need disability parking for my daughter."  The woman looked at my form with disbelief, scrutinizing every word.  I could tell she didn't believe I really needed disability parking.  She stated: "Oh, this is for a little one."

Yes, she is six.

The woman asked if it was my signature on the form as I pulled out my driver's license.  "Does your daughter use a wheelchair all of the time?"

Not all of the time, but when needed.  She can walk, just not far.

The woman seemed skeptical and I wanted to scream at her: "I don't want disability parking!  I want my daughter to be like every other child, but I have no choice!"  Instead, I stood there as she scrutinized, judging me and thinking I was cheating the system.

The woman was then satisfied that my forms were properly filled out (even if not quite convinced we were not cheating).  I asked if the tab could be switched between cars and she tersely stated: "As long as YOUR DAUGHTER is in the car, it can be used."

Then she walked away.  She came back with the placard, read the paperwork again and noted "Oops! It's permanent." As she walked back to get the permanent placard, the tears started to flow.

I kept thinking, "permanently disabled."

There weren't too many tears, just a couple that dared to escape.  I discretely wiped them away, as I tried to put the thought of DQ never being able to walk far out of my head.

Then the woman wrote that the placard would expire on DQ's birthday in 2019, and I realized that this tab would likely outlast DQ.  I had to ask what we do should DQ pass away before the tab expires, but I couldn't get the words out.  The woman's demeanor immediately changed (I can't imagine too many people cry at the SOS office).  She knew at that point that I wasn't trying to scam the system.  And she was so kind as I stood there sobbing at her desk.  She didn't make me finish the words.  She apologized to me, told me I just had to bring the tab back to their office, and she ran to grab me tissues.

I couldn't stop the tears and I couldn't leave the building fast enough.  I dropped a tissue on the floor as I searched for my keys.  As I hurried away, a woman in the waiting area let me know of my dirty tissue on the floor, so I had to run back.  All I wanted to do was to run away, to crawl in a hole and hide.  Here I was, surrounded by over 50 neighbors, sobbing like an idiot.  I felt the neon light flash above my head: "DANGER! DANGER! DANGER! Mother of dying daughter! Extreme emotions present!" It was all I could do to escape.

Once safe in my car, I cried my eyes out, pulled myself together so I could move on with my day, pretending to be like everybody else.

Friday, May 16, 2014

Princess Tea Castle

The Dancing Queen woke up Thursday morning with a huge smile upon her very swollen face.  Sitting hurt because of how big her belly was, but all she cared about was getting to be a princess that night!  Yes, Thursday was the night for the Princess Tea Castle with DQ's Daisy Troop.  She was going to dress like a princess and do all things princess with the other girls.

As DQ contemplated the many long hours until 6:30 p.m., she quietly asked: "Mommy, what if other girls in my class, who are not Daisies want to be princesses too?  I think I will only talk about this event with A. I don't want any of the other girls to get upset."  (A is the only member of DQ's Daisy troop in her class.) Such tact for a six-year-old!

Much later that evening, after dance class with recital practice, after dinner, and after her evening breathing treatment, DQ and I readied ourselves for the night on the town.  It was almost bedtime, but instead of heading to read a story, the Mad Scientist took our picture, then we were out!

We listened to "Let it Go" and the rest of the "Frozen" soundtrack for the entire car-ride.

By the time we arrived, DQ's Daisy Troop was already in the process of getting beaUtiful.  DQ jumped right in and didn't even scream as they pulled her hair into a rubber band and used bobby pins!  (I can't even brush her hair without screams of terror!)

DQ sitting on what she dubbed the "Queen's Chair"!
 Next, DQ got to choose from hundreds of princess dresses!  I bet you'll never guess what color our pink queen chose!

After a group picture with the singing princess who reigns over the Princess Tea Castle, the princesses were paraded into the tea room. DQ was nearer the end of the group and I almost fell over laughing as she tried to climb over the flowers to get on the stage that they weren't using at that point.  She felt she needed a stage to be properly introduced!

The girls then had a lesson in how to eat like a princess. And of course, they got to eat royal treats!

Then there was the fashion show.  A princess has to show off her evening gown!  DQ was asked what she wants to be when she grows up and, of course, she responded: "A queen!"  But we already knew this because she IS a queen!

Showing off her sparkly, light up, pink princess shoes!

The night ended with dancing!


Now you tell me, what more could Dancing Queen have wished for in a night such as that?!?!  Apparently, nothing, because she told me the night was a dream.  And when the Mad Scientist and I tucked her into bed, the dream she chose to sleep to was exactly what had already happened.  That, my friends, is a first!

Wednesday, May 14, 2014


I realized that I have become very selfish with my good stuff.  I only write when I am feeling bad or angry or desperately sad.  But that is not the majority of my life.  Most of it is good. This blog doesn't see any of that though.

Honestly, I don't really care that I'm not sharing the good with the rest of the world.  I've never written this blog for others.  It has always been about getting my feelings out. Hitting publish gives me catharsis; the necessary release of whatever I need to let go of.

The problem with only writing about the bad feelings or my sadness is that I'm losing the good.  This blog, facebook, and the Dancing Queen's carepage are the equivalent of a digital baby book for me.  And when I don't write out the good things, I forget them.  And in being selfish with what I write now, I'm leaving only a sad and pathetic digital reminder for my future self.

I want to remember the Dancing Queen's magic shows.  She puts on TRex's magician's hat that she has filled with a million random objects, pulls out a magic bouncy ball and then we watch it disappear as she drops it to the ground or stuffs it inside another hat.  Then she bows.

I want to remember how excited TRex has been to really be able to read chapter books on his own.  He has spent the last two and half months reading about one book a day.  He is constantly regaling us with his latest story.  His favorite right now are Jack & Annie "Magic Tree House" books and "Diary of a Wimpy Kid".  He reads for at least an hour every night at bedtime, unless he is right at the end and needs to read a little bit more.  He is always hidden beneath his blankets, in a private cocoon with his book light, his puppy dogs, and his latest adventure.  He barely has time to kiss me good night, but I don't mind because he is learning to enjoy books.

I want to remember TRex swinging the Dancing Queen around as they played together.  An afternoon spent waiting for a party to start and the kids just had themselves and their imaginations.  They were each a king and queen, then we played "I spy".  There was nothing extraordinary, but it is the simple things that mean the most.  That day was full of love.

I want to remember the Dancing Queen doing the "Hot Dog Dance" at the end of her favorite show.

I want to remember the feeling of TRex finally releasing his fear and allowing himself to ride his bike without training wheels!  It was not just another milestone for him, it was so much more.  He had learned that you might get hurt when you fall, but you'll never have the fun of the air on your face either.  He learned that he was strong enough to get back up again. And he learned he could do it, if he just tried a little bit more.

I want to remember DQ singing "Let it Go" from "Frozen" over and over and over and over and over and over and over again.  And I want to remember how she does the same exact moves as Elsa while she sings it.  And how that song and that movie have helped DQ not let fear control her.  I don't want to forget the pride I feel when I hear my baby sing with such conviction because she is letting go.

There are so many more moments that I want to remember.  These are just a handful from the last couple of weeks.  I can't be selfish with the happy.  I will only rob myself of these beautiful memories when all I will want is to remember the smiles.  I don't want to be left with only the sad and angry.

Thursday, May 8, 2014


There are two conferences that I have wanted to go to regarding two of the Dancing Queen's primary diagnoses--pulmonary hypertension and congenital heart defects.  The conferences would allow me to meet people in person who have felt like family and helped me so much over the last several years.

What's more, both conferences are coming up very soon--the same weekend in the same city.  I could easily attend both as the city is driving distance.  The fees are not prohibitive for me either.

And I almost signed up to attend both just for the opportunity to be in the room with people who understand what I am going through.  I was exhilarated at the thought.

Then I thought more.

None of the people in those rooms will be able to relate to me.  They go to these conferences to find hope for a cure; new therapies; new drugs; new ways to combat these devastating illnesses.  These people don't want to know I have come to terms with the fact that there is no cure; that I am not doing every potential procedure/surgery to prolong my daughter's death.  There is no place for someone like me at those conferences.

Frankly, I would want to scream after an hour of hearing people talking about breakthroughs  being made to help their children, while I have DQ's cardilogist and surgeon's voices in my head, repeating "No cure will come in time for your daughter.  They are not working on it yet.  It is too hard."

I know I'd want to throat punch every well-meaning parent who plies me with platitudes upon hearing the Dancing Queen's story.  Hearing "oh, I'm sure they'll find  a cure for your daughter" or "you should see my cardiologist, go to our hospital, your daughter will be fine" would make me want to bite back: "so you think I'm negligent because I haven't sought enough second opinions!"

Inevitably, I'd start to omit parts of DQ's story so I do not do something rash. But then I'd feel terrible, as if I was being untrue to DQ and myself. 

I determined that I'd probably leave the conferences sad and more alone than when I arrived.  I don't want that. 

I don't want singular talk of hope and cures.  These are life-threatening illnesses that are terminal a lot of the time.  Ignoring that fact just alienates those of us who have run out of options. And for what purpose?!? To make other parents not have to think about the fact that their child could die too! It's bullshit; all of it.

I'm not pessimistic, but I'm also not unrealistic.  Unfortunately, I am in the minority and nobody wants to be reminded of the uncomfortable truth about life-threatening illnesses.

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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