National Believe Day 2014

Once again, it's National Believe Day, where all letters to Santa dropped off at Macy's raises $2 for Make-A-Wish.  Every year, this event gets bigger and bigger and I couldn't be more happy. Make-A-Wish is truly an amazing organization that can use all of the help it can get.

Three years ago on National Believe Day, we were preparing for the Dancing Queen's wish trip.  Her trip was magical, even though emotionally draining. I will have memories forever. The granting of DQ's wish brought joy and excitement like we've never seen before and made this life easier. It was more than a vacation. It was truly a wish fulfilled.

While DQ no longer believes in magic and she knows Santa is not a real person, she still believes. On this National Believe Day, I hope you will drop your letter to Santa at Macy's and give another family a smile that will last through all the horrors of childhood illness.

The Choice

Ever since the Mad Scientist and I visited the funeral home at the urging of DQ's hospice staff, I've had some very heavy thoughts and emotions. I have been more sleepless than normal. Agitated. Unwell.

Actually, now that I think about it, the visit to the funeral home didn't cause me this consternation, but the follow up visit with hospice later that week has done me in.

Really, the visit to the funeral home helped me more than I expected and calmed me in a way I did not realize that I needed. It made me feel like I would be able to say goodbye as I needed to, in my own time. That comforted me greatly.

We were told that DQ could stay in our house as long as needed and when we were ready, the funeral home would pick her up in an unmarked van for our own privacy and comfort. They promised not to rush me and not to intrude in our home in an abrasive or cold manner. We were assured that the funeral home would take the utmost care of our precious daughter and that she would be treated in as much respect upon her death as we expect in her life. And she wouldn't be alone as she so greatly fears.

A couple short days later, the hospice social worker pulled the Mad Scientist aside and told him we had to think about organ donation. There wasn't much to think about though because we have always been in great support of organ donation. Donated tissues saved DQ's life as a baby!

But there was more.

If we want DQ to be an organ donor, she will have to be rushed away to the hospital immediately upon death. There will be no thoughtful, peaceful goodbye. The caring team we met at the funeral home will not be in charge. She will be in some ambulance, scurried off on a gurney, maybe even left in a hallway at the hospital as I've seen done tons of times before. She will be all alone and in the place that scares her most--the hospital.

Having to choose has tormented me in a way no other decision has before.

I know the importance of organ and tissue donation. I've begged people to become donors. I've been listed as a donor since I received my driver's license. I have friends whose children have been given a second chance at life because of organ donors and friends who have lost children because a donor could not be found. We considered heart and lung transplant for the Dancing Queen and if it had been safer for her, we would have probably done it. I have countless friends with their children on organ donor registries right now. I know how important this is! I want to donate the Dancing Queen's organs.

But I can't imagine letting her go immediately. I can't imagine letting her go at all, but having to agree to her being ripped out of my arms, taken from our home in an emergency to the place she fears most!!!!!!!!!!! That seems to defeat the entire purpose of hospice. What dignity is there in that?

And what could they use from her anyway? Her heart and lungs are already destroyed. Her liver and kidneys have begun to be damaged and will likely be much worse by that time. Her beautiful eyes would be the only real thing left to use. Yet the only organ that must be transplanted live is the heart. Why would she have to be carted away immediately, in such a cruel and heartless way?  No wonder it is so difficult to get people to agree to organ donation.

And before you start spewing vitriol in my comment section, I'm not writing this to get your opinions of what an awful person I am for considering to not donate my daughter's organs upon death or to hear what a hypocrite I am.  I'm already feeling that on my own. I'm also not writing to seek support for whatever decision we end up making. I just need to get it out there so I can let go and hopefully come to some decision.

Lost

This October was the longest month of my life. It started in the most horrific of fashions.  I wasn't even sure the Dancing Queen would still be with us at this point. It seems like a miracle to me that she has had a complete turnaround and is back to the DQ we had before the summer. The whiplash of emotions has left me drained beyond comprehension.

I've been here before. I've watched DQ come close to death and fight her way back, but this was so different on so many levels.  The emotional turmoil we faced this past month was nothing short of torture. And even the Mad Scientist wouldn't argue that I was being overly dramatic in this case.

I would be lying if I said I don't have a little PTSD from watching DQ in such a downward spiral.

Last night, she screamed out over the monitor and I about had a meltdown because I couldn't believe it was beginning again. Because my emotions are still so exposed, so raw, when I heard that single scream, I couldn't sleep. I just laid there waiting for the other shoe to drop. Instead, it turned out that we forgot to put an underjam on last night and DQ's bed got wet. Of course, she sleeps so hard that she didn't wake and realize the issue until morning.

You'd think my disposition would cheer with the holidays coming. But not even that can take this pain and fear away.

As of two weeks ago, neither kid believes in Santa or magic.  I've tried hard to let them hold onto some sort of wonderment, but none of it is the same. The excitement is not quite palpable. Everything is less fun and more routine.  The holiday vibe has been lost.  And that is so disappointing.  How can a six-year-old not believe in magic?!? And I was the one who had to take it away from her so that she would understand why Santa would not magic her healthy. The whole situation is devastating.

Couple the loss of magic with the month we've just had, I can't help but wonder if this will be our last Christmas.

Is it any wonder why I'm constantly muttering "F*CK" under my breath?

"Inclusion"

Since the Dancing Queen was very little, she hasn't quite belonged.  I wrote here years ago how she was treated like a doll by the bigger preschoolers (many younger than her, but bigger).  The practice has continued through the years, but the divide by DQ and her agemates continues to grow.  She has friends in her class, but there are definitely areas where she lags behind and it makes her seem so much younger.

DQ reads and writes way better than TRex did at the end of first grade, let alone the beginning where she is now.  She is doing remarkably well with academics.  It is socially where she falls terribly behind.

We've put her in dance class and girl scouts to help her interact socially with other first graders.  Unfortunately, she has to be in a special needs dance class because the "regular" class for 6 year olds will not accommodate her need to rest or slow down.  So, she is with a bunch of older kids, teens, and a smattering of little girls who are all cognitively below her and, socially, just as far behind, if not further.  This does not help, but DQ gets to dance.

Girl scouts is a bunch of girls her own age and in her class.  Unfortunately, instead of helping her belong, much of the time, DQ is simply made to feel out of place.  Girl scouts simply provides her with lots of opportunities to watch the other kids do things that she cannot do or must do in an altered fashion.  DQ has trouble with fine motor coordination as a result of her 22q deletion syndrome, so when the girls complete projects like rubberband bracelets, DQ cannot do so on her own.  When the girls simply run around and be little girls, DQ cannot join but for a minute because of her heart failure, so she is left to watch as they have fun with out her. For trips, DQ needs her wheelchair.  Any activity involving food (which activities don't involve food?) and there is not even an attempt to include DQ because it is too difficult to do gluten free.  (Don't even get me started on this--I can't send tree nuts for TRex to eat on his own, but when the class parties come and there are communal treats, they don't have to accommodate DQ because it's too hard! How much bullshit is that!!!!!!!!!!!!!!!)

So during girl scout meetings and events, DQ must watch a room full of girls just who are supposed to be doing things with her, exclude her.  DQ is left frustrated and angry. She lashes out. Who can blame her?!? But that segregates her all the more.

I use these times to help her understand that not everyone is the same. These are learning moments for her to accept her differences; to understand that she may not be able to do everything the same way, but she can still participate.  These are the same lessons DQ learns in school and everywhere else she goes.  There is not a day that goes by that we don't have to teach DQ that sometimes she will be left out.

But today, as the girl scouts chose to attend a play together at the time they are serving a lunch that DQ cannot eat (rather than a different showing that would not cause DQ to be singled out AGAIN), I wondered: When is it the time to teach the other kids to think of DQ's feelings?  When is it the time to say: this might require a little more thought, but we'll bring gluten free snacks so that everyone can belong?  Why should my daughter be the only one who has to change or has to learn?  Isn't one of the main purposes of inclusion to teach the rest of the world that disabled persons are people too and that they matter? DQ works harder than the rest of kids to simply breathe! Why can't they eat freaking popcorn for snack ONCE! When the kids are running around for ten minutes like chickens with their heads cut off (and I'm not supposed to be in the room), can't the leaders suggest they play a game that everyone can do? And if I'm not allowed to assist, are you going to make sure that the activities are able to be performed by all of the girls or should the girl scouts change their requirements to specifically exclude children with fine motor delays?!?!?

I guess I should be grateful that the girl scouts allow DQ to tag along and pretend like she belongs since the dance studio won't even do that.  But I'm not grateful.  I'm angry and I'm sad. I would pull her out if she didn't ask to stay.  Unfortunately, she doesn't know any better. Nobody outside of our family has treated her like a regular kid.  She doesn't know what it's like to have the girls actually play with her instead of at her or using her as the toy.  This is the only way she has ever belonged and it feels normal to her. But, for me, I feel like they are trying to force her out. They don't want to change, so they will make it so uncomfortable for her that eventually, she'll give up and they won't have to think about the disabled child. And frankly, I'm so exhausted that I can't fight this fight. They don't want to accommodate, so I'll keep teaching DQ. She will be a good person. As for all of those girls whose moms think they are so great because they treat DQ like a doll, those girls are losing the opportunity for real growth. It is a shame because if they were just guided, they'd do it easily.  But their parents are too blind to guide and I have too many battles on too many fronts to deal with this one.

Scattered Grief

There is a catch in the back of my throat; my chest seizes up; I have difficulty breathing; then the tears well so big and fat.  I try to hold them in, but I can't.  I am balling uncontrollably in my office, at the grocery store, in my car.  There is every reason and no reason whatsoever for my walls crumbling down.

At the end of summer, I came clean on DQ's carepage about her starting morphine and having to make funeral plans.  At least I thought I was coming clean. That WAS the plan.  So many times, the stages we go through with the Dancing Queen are not real until I post it to her carepage and just as many times, I have held back when posting there.  This time, I purposefully put more out there because I hurt so much more.  It has been utterly exhausting to try and be up beat for everybody else. Yet, when I posted, I only put a fraction of the pain I felt that I needed to write that day, so I didn't really come clean.

And each day, it hurts all the more.  Putting it out there didn't help like it normally does.  It didn't cement my feelings nor give me insight like I have become accustomed. Instead, I am overtaken by waves grief, made more acute when I am pointedly asked how I am doing because the public now *knows* life is so much harder than I had let on most of the summer.

But what am I supposed to say to the random person who I have never really talked to before?  I respond with my pat answer: "I am doing as well as can be expected", but on the inside, I'm falling apart.  I posted to the carepage so I wouldn't have to explain myself to the outer rings of my social sphere. Instead, I have to explain myself more often in a way that sucks.  Just sucks.

I know life is only going to get harder and harder with each passing day.  How will I survive?  I'm not sure any more. I've only made it this far because I had no other choice, but I may not have the energy to continue.

I am so tired.

And when I sleep, my dreams are riddled with nightmares in which some evil has stolen my girl from me.  I spend my nights searching and searching for her all by myself because nobody will help.  I can never find her though.

When her cries of terror rip through the silence of the night, waking me instantly, I know that she is having the same exact dream as me.  She always does--some evil steals her away, leaving her all alone. How can I make it better for her when it won't be?

And what about TRex?  He hides; he won't talk; he won't engage. Are we losing him forever? How can I bring him back before it is too late when he always pushes away, not wanting to burden us?

How has life changed so much?

Failure

The Dancing Queen continues to suffer.  Her pain is at its worst in the morning.  She vomits at least once a week.  We have added so many meds to help.  Some seem to be making things slightly better.  She is less swollen these days, but her pain continues without abatement. And her doctors have given up finding an answer and have no other suggestions for help.

This morning, as she cried in pain, writhing on the floor after vomiting, I scooped her up and held her close.  I begged her to tell me she knew I was doing all that I could to ease the pain.  She complied.

I whispered in her ear that I wouldn't stop searching for an answer until I could find her some relief.  She said: "I know, mommy." Her voice was filled with such resignation, such wisdom.  She knows I will probably not find a solution.  And, in that, I have failed.

I realize that it is not my fault that she is in pain.  I know that she doesn't blame me.  But if I can't keep her alive, I ought to be able to keep the pain away.  And I can't.

Isn't one of the main points of hospice to ease the pain of the dieing? Why is it that my dieing daughter is in pain every single day of her life?  Not a little pain, but a lot of pain.

And she's still not eating well.  We've lessened the nausea through regular doses of zofran, but she fills up within a couple bites of food.

Of course, I've done lots of research to try to find some answers since the doctors seem to be of little help.  The one thing all my searches return me to is "Palliative Care of Heart Failure", written by a group U.K. doctors. Much like most things I've read, the guide states that eventually heart failure leads to nausea and vomiting and less desire to eat.  But this guide also provides a suggested aid:

Maintaining adequate nutrition is important and difficult. Small, frequent, easily digested and appetising meals are required. Alcohol can be a very useful means of improving appetite, taking in calories, and improving mood and general self-esteem.

Obviously, the guide is written for adults and giving alcohol to my six-year-old would not only be frowned upon, but illegal. So, I'm left with small, frequent, easily digested, and appetizing meals.  Give me a break! Easily digested and appetizing don't really go together.  The guide's statement that "maintaining adequate nutrition is important and difficult" is a ridiculous understatement and a laugh.  F*** YOU HEART FAILURE!  F*** YOU!

The Scream

When the Dancing Queen was in the hospital during her first (or perhaps it was the second) round of her boxing match with pulmonary hypertension, she developed pneumonia following a cath.  She was in the hospital for at least ten days.

One evening, one of my parents came to sit with DQ as she watched "Cars" for the billionth time (or was it "Signing Time"?) so I could grab some food and pee (DQ would not let me leave her eyesight).  That night, I decided to grab some dinner and went to the waiting area to be out of the room that had been my prison for quite some time (admittedly, DQ was more of a prisoner than myself).  While I was there, I engaged in a wonderful, if not sad, conversation with two other heart moms.

The conversation was wonderful because these moms understood me in a way that most other people can never relate and will never relate.  The conversation was sad because it is always sad to be discussing the horrors of children fighting battles against defective hearts and lungs.

Today, I don't remember specifics about what we discussed, but I do know that we each recounted our girls' stories (all of the moms' CHDers were girls). I clearly remember talking about our girls.  It was clear how much we needed our girls and how much we loved them and would do for them.  After an hour, I had to return to DQ so my mom or dad (whomever was there) could head home for the night.

I sat in DQ's hospital room that night thinking about the other moms and the relationships I had with them and all other heart moms.  It is a special relationship, something that cannot really be understood until you are in our shoes (shoes none of us would ever want any of you to walk in).  And I was so happy to be able to sit down with other people in a room and not have to explain the basics of being a heart mom. They just knew. I reveled in how nice it was to have this instant camaraderie and connection.  I looked forward to other "dinners" in the waiting room.

Suddenly, my reflective moment was shattered by the most heart-wrenching scream I have ever heard.  My body tingled just now as I recalled the moment--it was that intense. I knew in an instant what the noise meant: one of the moms I had just talked to, one of the moms who had told me of how hard she and her daughter had fought to be here, had lost her daughter.  The little girl had died.

I wanted to run to my fellow heart mom, to hold her, to absorb some of the pain that enveloped the entire cardiac care unit.  But I couldn't leave DQ.  She was sleeping at that moment, but had been waking frequently and could not handle being in the hospital room without me or someone else she loved in eyesight.  So, instead, I sat in my prison cell, and cried for my new friend's loss.

The next day, when MS came to switch places with me, I tried to find the mom, but she was gone. 


To this day, I've not seen the mom again, but I do think of her often.  I think of her daughter.

And as DQ continues her slow decline toward that same fate, I think of them both more. And that scream, . . .

. . . it haunts me.

Please, eat!

I cried today--big fat tears in the kitchen.

In front of the kids.

I don't hide my emotions from them, but I do try to keep it together normally.

Today, though, it was too much.

The Dancing Queen was complaining of stomach pain.  She wasn't touching her food.  I tried every trick I have left to get her to eat.  I gave her barbeque potato chips for goodness sake!  Nothing.  She wouldn't eat a thing.

I begged her, pleaded with her to just eat.

She has to eat!  This has been weeks now without really eating, on top of a lifetime where she has barely eaten enough.  She is looking gaunt. She is feeling sick.  She will only get worse if she doesn't eat!!!!  I can't let her go; she NEEDS food!!!!!!

Dancing Queen, please eat!

"But, Mommy, my tummy hurts too much.  I can't eat."

And then I cried.

TRex tried to smooth things over.  "Mommy, please don't cry.  It will be okay."

It won't be okay!  If she doesn't eat, she will never get healthy again! 

I could see that both kids were upset by my emotional outburst and yet there was nothing I could do.  I picked DQ up in my arms, held her tight.

I know you hurt.  I know you don't want to eat.  But is there something, anything, that sounds good? Please, baby, please.

And she just cried in my arms, "No, Mommy."

Magic Wand

A couple of nights ago, as I laid the Dancing Queen to sleep, I gave her a good dream as I always do to try to keep her happy at bed time and push the nightmares away.  That night's dream involved two of her favorite things--rainbow wands and being Elsa .  After she and I kissed the dream, filled it with love, and smooshed it into her head for safekeeping, she turned to me and said: "Mommy, I wish I had a magic wand that could give me powers like Elsa and make rainbows too!"

You can dream about having magic powers, honey, but I don't know how to make magic and I don't know anyone who can.

"The Chef can, Mommy!"

You think the Chef can make a magic wand?

"I know he can, Mommy!  He makes potions all of the time and magic wands are similar."

Well then, the next time you see the Chef, you'll have to ask him to make you a wand.

"Will you do it, Mommy?"

No, honey.  With something this  important, I really think you need to ask him yourself.

"Okay, Mommy.  I will ask the Chef to make a rainbow wand that makes ice and snow and rainbows."

You do that, sweety.  Good night.  I love you and will see you in the morning.

I totally thought that she would forget about the wand by morning.  She comes up with ideas like this all of the time and forgets about them fairly quickly.  However, the magic wand idea did not fade.  Rather, it grew.

As of last night, the Dancing Queen's wand that will be made by the Chef had grown in power.  She was certain it would turn her brother into Om Nom from Cut the Rope.  She thought that was hilarious.  The wand was going to take her places and get her ice cream and houses made of candy.  She couldn't wait to see the Chef again to ask him.

As the extravagance in wishing grew, I reminded her that magic is not real and that the Chef may not be able to make her a wand.  She was not deterred: "Don't worry, Mommy.  I know the Chef can do it."

This morning, DQ found her own non-magical rainbow wand left over from her rainbow birthday party.  So as not to tax the Chef too much, she decided she could use that wand and all the Chef would have to do is create magic dust for it.  When I asked how she knew the Chef could make magic dust, she quickly responded: "Mommy, he makes potions all of the time.  What do you think magic dust is!" How could I argue with that logic?

At breakfast though, the magic wand became ever more important.  The Dancing Queen was in pain again.  She could not eat because the pain was too great (this is a very common occurrence--we're lucky if we can get her to consumer 40 calories at breakfast).  As DQ laid her head on the kitchen table, she stated matter-of-factly that the first thing she will wish for when the Chef makes her magic dust for her wand is no more tummy aches.  TRex quickly jumped in and said he was going to wish for DQ's heart to no longer be broken.  The children were so sincere and wanted this so much.  We had moved beyond rainbows, houses made of candy, and video games.

I wish you didn't have pain either DQ.  I wish your heart wasn't broken.  But you have to understand that the  Chef is probably not going to be able to make you magic dust.  And even if he does, the dust may not help  your belly or your heart.

"No, Mommy.  The Chef can do it! I know he can!"

Please promise me DQ that you won't get angry with the Chef if he can't make you the magic dust that you want.  I have no doubt he will try, but some things are very hard to do, even for the Chef.

"Mommy, the Chef CAN make me magic dust, but if it doesn't work the way I want it, I won't get angry."

Thank you, DQ.  Thank you.

Feeling Bad

I am so ready to move beyond this holiday, this "independence" day.  I have felt nothing but trapped this weekend; trapped in a horror movie, playing a key role and watching it all at the same time.

We started our weekend at an unplanned visit to the cardiologist.  The Dancing Queen has not felt well for months, so it was time to be seen.  The doctor found no change in the heart function, but no explanation for increased symptoms.  While the cardiologist basically told us everything she has said before, this appointment was very different.

At this appointment, the cardiologist finally realized that the Dancing Queen is not a baby any more.  I could see it in the doctor's eyes and in her demeanor.  She actually saw what we see everyday--a six year old who is surpassed in size by three year olds.  A six year old, who can read books like nobody's business, who has her own thoughts, fears, opinions, but who eats no more than a toddler.  The dichotomy of DQ's face with her missing front teeth and nubs of new ones beginning to show, with her body so small, is jarring in a way.  I've had strangers comment that they can't believe she would be losing teeth already.  Most people can't see the wise, experienced six year old beyond the little body.  Her doctor couldn't either.  Until last week.

I've wanted nothing more than the doctor to see what we see--to know that DQ is big and wants to be big, but her heart and lungs won't let her.  I've fought with the doc on this.  She wouldn't approve a wheelchair for DQ because she said DQ could use a stroller, but DQ didn't want to be a baby anymore and the doc couldn't see that!  Yet, on Thursday, when the doc finally saw that DQ is so incredibly small compared to where she should be, she saw that DQ has grown in height, but stayed the same weight, and just looks gaunt, it made everything all the more real for me, especially after seeing the concern I have mirrored in the doctor's eyes.

We left the appointment with new medications for the Dancing Queen.  They are supposed to help DQ's heart function and lessen her symptoms, so maybe she could feel better.  Unfortunately, the meds haven't stood up to fireworks and fun.  DQ is feeling worse than ever (when not suffering from a bug).  And it has her afraid, so very afraid of being alone when she dies.

I'm not sure how to calm her any more.  We remind her that love never dies.  We remind her that we are with her always.  We hold her when she cries.  But at the end of the day, my baby is afraid to go to sleep because she doesn't want to die alone.  We even gave her an extra dose of Valium last night.  That didn't help.  Tonight, she is sleeping with TRex.  But what about tomorrow?  How can I calm her fears when I can't calm my own? 

Somebody Else

"Mommy, I don't want to be DQ forever.  I want to be somebody else." 

Why would you want to be somebody else, sweety?

"I have a lot of pain."

Everybody has pain, DQ.  If you were someone else, you'd still have pains sometimes.

"But, mommy, most people don't have pain like I have pain.  I always hurt."

I looked across the kitchen at the hospice nurse, there for her bi-weekly checkup. We both gave knowing looks.  DQ was right.  Most people don't have pain like her.

I took a deep breath and  gathered myself.

But if you weren't DQ, you wouldn't love music in the same way, you wouldn't be able to sing as well.  If you weren't DQ, you would lose all of the wonderful things about you that make you special.  DQ is an amazing, wonderful little girl with so much light and life.  If you weren't DQ, you would lose that.

She just stood there, crumpled and sad.

If you weren't DQ, we wouldn't have the smile that lights up the entire room.  And you probably wouldn't love pink and ice cream as much.  If you weren't DQ, you wouldn't be able to read to me like you do.

I know it seems like it would be nice to be somebody else because you don't want the pain any more.  I don't want you to be in pain either. But I don't want to lose you and all of the wonderful qualities that you bring to life. I love my strong, sweet, funny, amazing Dancing Queen and I wouldn't want her to be anyone else.

Her shoulders weren't quite so stooped any longer, but the sadness still enveloped her.

The pain was too much today.

Funeral Homes

Over the last couple of weeks, I see funeral homes everywhere I go.  I never realized just how many funeral homes are around.  They are everywhere!  And just like everything that is hidden in plain sight, once you notice one, you see them all.

And with each one, I wonder:

Is this the one we'll use? 
 
How does one decide on a funeral home?  I watched "Six Feet Under".  I don't want a Kroner! But I also don't want those old, dark, smokey funeral homes I remember from my childhood.

How much does  a funeral cost?  How will we afford it?

The hospice team has told me they'd help us pre-plan a funeral, but they will work on our time-table.  How do I know when I should start the process?  I don't want to! What if everything happens as fast as I've seen with others?  

Will they have a pink casket?

Will they play her music?

How does a mom actually say: "yes, please cremate this body that came forth from me, that I held countless hours, that I tenderly took care of, that I loved with all my being"?

By then, of course, the tears are flowing.  I curse the world for putting my baby through this hell and making me have to think of her funeral.

Eventually, I shake my head clean and decide that it is just not possible that my baby will die.  She can't!  There is too much left for her to do, to see, to hear, to dance to.

So, I continue my drive, and then there is another funeral home . . .

Pressure

"Mommy, why do I have to take sildenafil three times a day?"

Because, honey, it helps to lower the pressure in your pulmonary arteries--the vessels that bring blood from your heart to your lungs.

She stops and thinks, not quite grasping it, so I ask: Do you know what pressure is, DQ?

"No, mommy."

I gently poke her arm and ask: Do you feel that?  That is light pressure.

I then pressed harder: That is harder pressure.

Now, I want you to think about the hose you use for your sprinkler.  When the water is off, it lays there and you can squeeze it right?  

She nods.

But when we turn on the water, the hose gets hard.

"Yes, mommy."

It is the pressure from the water pushing on the hose that makes it hard.

I pressed on her arm again.

The same thing happens in your arteries that carry blood to your lungs.  They are very small, but your body is so big that you still need a lot of blood to keep your body going. All of that blood needs oxygen. So as your heart tries to push all that blood to your lungs through the small arteries, the pressure gets really hard.

I let that sink in for a moment, then press on her arm again (not hard, but enough that it could be felt).

What would happen if I pressed on your arm with this pressure for a long time?

"It would hurt me, Mommy.  I would have a booboo."

Yes.  What would happen in your lungs if we let the high pressure in your arteries continue?

"I would have booboos inside."

Yes, honey, you would.  Sildenafil helps to lower the pressure and that is why you have to take it three times a day.

She didn't say much else, but from the look of her face, my Dancing Queen understood what I was saying.  My sweet little 6 year old lost a little more of her innocence. 

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.

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!

#TBT: May 2009

Selfish

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.

Conferences

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.

Shoes

"Mommy, some kids don't like my shoes."

What do you mean, baby?

"They don't like the way one shoe is bigger than the other."

Do you tell the kids that these are your special shoes to help keep your legs even so you don't have hip and knee pain?

"Isn't there something else we can do instead of shoes?"

Your doctor who takes care of your legs said that he could do a surgery to cut a large piece of your big leg out and then your legs would be the same length.

"They will cut out my leg?"

That was the plan, honey, but we're not going to do that any more.  It is not worth the risk to you when your special shoes help just as well.

"What do you mean by risk, Mommy?"

When anyone has surgery and has to go to sleep for it, there is a danger because a machine is breathing for you instead of your lungs.  With you, Dancing Queen, it is much more dangerous because your lungs are so sick.

"So, the doctor's not going to cut my leg?"

No, honey.  We're not going to do that.  Your special shoes are much better than taking out a large piece of your leg, aren't they?

"Yes, Mommy, but I wish they weren't so big."

I know, honey.  Me too.

Lost Dreams

Once upon a time, in my deepest fantasies, well before I met the Mad Scientist, I dreamed of having a a house big enough to entertain.  I dreamed of Saturday nights with lots of friends over, the kids running around having fun and the adults sitting around talking and playing games.  I dreamed of the simple things; the moments that I remember fondly from my own childhood.  Of course, at the time, I never thought I'd marry or have kids, so those fantasies were just fantasies.

Then I met the Mad Scientist and fell in love! We bought a house that was too small to entertain, but those moments were waiting for me right around the corner.  I couldn't believe how close I was to living out my fantasy life!

When I was pregnant with TRex, my fantasies grew and I knew life would be perfect.  (Of course, I didn't really expect perfection, but you know what I mean.)  Life was falling into place in a way that far exceeded my imagination.

All of that came crashing down when the Dancing Queen was diagnosed.  At first, we were simply too busy to and too scared of germs to entertain (and our house was still too small).  We couldn't go out in public much--there was too much equipment, we needed to maintain our routine for health, and germs were too, too scary.  So even when we were invited places, it was not feasible to go.  And even if we planned to go, many times we'd end up canceling at the last minute due to illness.  I've lost count of the number of fun outings we had to cancel literally as we walked out the door.

Now that it is slightly easier and we have a house big enough to entertain, the option is gone. We're never invited places and we have no one to invite to our house (and frankly, the energy to clean for guests, let alone cook, is way beyond our capabilities these days).  Besides, we still have the problem that routine is very important for health (maybe even more so these days).  Between work, school, doctors' appointments, and the kids' activities , we don't have the time travel to  see friends we used to have and cannot hang out to make new friends.

Maybe this would be our life even without a sick child.  Maybe we'd still stick at home most of the time with just the four of us.  But I doubt it.

I don't blame the Dancing Queen.  I know she would be out and about more than the rest of us if she could.  That is part of the problem.  She doesn't rest when she is having fun, so if we do go out, she needs at least a day to recover.  That is not fair.

I hate that we can't have the life that I had dreamed about.  I hate that people are uncomfortable around us or find it easier to ignore us because including us is too hard.  I hate that I can't let the Dancing Queen stay up much past her 7:00 bedtime.  I hate that I don't have the energy or time to invite people into our home so that I can show them we are normal and so that my children can have fun with others.  But most of all, I hate that its things like friendship, camaraderie, play dates, and memories never made that are lost to my children.

Sad

The Dancing Queen has been doing relatively well.  If she is declining, it is not as obvious as a year ago or maybe it is as obvious, but I am no longer shocked.  We still have days that are blatant reminders of what is to come.  But most of the time, we live our normal.

Because we have routinized living with heart failure, it feels like it is wrong for me to feel sad.  But I am sad; so very sad.

I have bouts that take over my entire being and leave me a puddle on the floor.  The triggers may be obvious or out of the blue.

For instance, an obvious trigger was X commenting how amazing it is that people could die of pneumonia in this day in age.  She has no clue how common pneumonia is or how deadly, nor does she realize how very possible it is that an everyday bug could lead to pneumonia and kill my sweet girl.  Hearing her tactless comment was hard, but also not completely unexpected, so I was ready.

I wasn't ready when the Mad Scientist sent a simple text letting me know our taxes would be timely: "watched her post mark the letters as I stood there. we're good."  I'm not exaggerating when I say reading that text literally took my breath away.  I would have fallen down had I been standing.  Instead, I crumpled into a heap in my chair, sobbing uncontrollably.  It took all of the energy I could muster to stifle the earth-shattering groan that tried to escape.

Thinking about it a week later still makes my heart hurt and the tears are flowing again.

Why does a seemingly irrelevant text hold such power?

Simply because paying taxes reminded me how much I have to work and how little time I have with my children and how precious that time really is.

We have no idea how long the Dancing Queen will remain in this current routine.  No matter how comfortable it all feels, that clock on the time bomb continues its relentless death march.  And it makes me sad, so very sad.

Sleepless . . . Again

I haven't been sleeping.  I don't even remember the last time I had a full night's sleep.

I've never, ever been a good sleeper. It has never come easy, but this is so different.  I've blamed my thyroid (or lack thereof).  I've blamed seasonal allergies.  I've blamed gluten.  I've blamed the Mad Scientist's snoring. I've blamed being too cold at night, being too warm at night, back pain, leg twitches, the Dancing Queen coughing over the monitor . . . The list goes on and on.

Every night, something different keeps me awake. Melatonin no longer works.  I've taken the new ZZZ sleep, but it only lasts for about 4 hours, then I boing awake again. And in the morning, I'm so tired. By afternoon, I can barely function.

Is my lack of sleep directly correlated to my lack of writing here?  I've wanted to write; felt I've needed to write, but I have nothing.  I'm holding everything in.  But the weird thing is, I don't feel like I'm holding things in.  I don't lay awake worrying.  I don't think about what-ifs.  I just lay there.  Nothing.

It's true that the Dancing Queen turned 6 a couple of weeks ago, an age I never imagined for her when she was a baby.

And we are now a year out from admitting DQ to hospice, from learning she only had a handful of years left.

Am I depressed?  Am I feeling anticipatory grief?  How can I be?  The Dancing Queen has looked SO good lately.  I know looks on the outside mean nothing, but she just seems to be a little better.

Perhaps denial on my part is hurting me and keeping me from feeling.  I just don't know, but I want to sleep and feel rested.

Not Strong Enough

I'm not strong enough.  I feel myself breaking a little piece at a time. And I'm sure there will be nothing left after a while.

We had the Daisy Investiture Ceremony last night for the Dancing Queen.  There were three babies there, from itsy bitsy at a couple of weeks old to about 6 months and then just learning to toddle.  Juxtaposed against the group of kindergarten girls running around and having fun, with the big brothers in back playing video games, a giant wave of nostalgia overcame me.  My babies have left me and each day they grow more and leave more.

Later, I stared at photos of my chubby little TRex and decidedly not-chubby baby DQ.  I cried and cried.

Every parent faces this.  We are raising our children to be strong enough to go out on their own--to leave us. But, most of the time, parents still get to see their children after they've grown and gone.  But I'm raising one of my children to leave me forever, while still letting her plan her future out of my home, living.  This ridiculous balancing act is so hard.

The situation always hits me harder when the doctors actually agree with me that DQ continues to decline.  She will be started on a new med this week to help with her symptoms.  I can handle sick.  I can even handle the effects of the decline.  But the more she declines, the closer I am to never being able to hold her again.  Never hearing another good night song.  I cannot handle that thought.

She has a sinus infection this morning and wanted to go back to bed.  Ten minutes later, when she hadn't fallen back asleep, she cried and cried for me because she was afraid in the dark.  She never wants to be alone.  How can I leave her alone? In the dark? She gets so scared?   And as much as I know at death, you are gone, just as you were before you were born, I don't think I will be able to leave her alone.  She is supposed to stay with me!!!!! I'm supposed to protect her. And I can't. I can't. I'm not strong enough.