Thursday, October 16, 2014

"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.

Tuesday, September 9, 2014

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?

Wednesday, August 13, 2014

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!

Wednesday, July 23, 2014

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.
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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