Friday, February 26, 2016

What a week!

I can't even believe what a shitty week this has been.

It started last weekend with so much work that there was no time for much of anything except more work! DQ was so bad too. she was misbehaving non-stop. MS and I were both at our wits end. Seriously, DQ spent more time on her room thinking about her behavior than anything else.  Do you know how hard it is to get through to a child in pain that she can't treat everyone around her badly because she is in so much pain?!?! It took hurculean will to deal with her and we still lost.

Monday came and DQ had an appointment with a neurologist in hopes of finding relief from abdominal migraines. The problem was that DQ got a migraine, complete with many rounds of vomiting as we tried to leave. We were late and then DQ vomited many more times in the reception waiting room.

Two hours later, we left the doc with more meds and a lot more questions, including the possibility that DQ's debilitating migraines may have been brought on by sildenafil. I raised this idea years ago , but was told "no, sildenafil doesn't cause stomach ache." After talking to the neurologist and researching on my own Monday and Tuesday, I decided on my own that  it is likely sildenafil has caused this excrutiating pain for the last 2 years!

And the guilt hit. If I had researched more two years ago,  could I have ended her pain earlier?

While I had my epiphany, DQ was still in mountains of pain and thus behaved horribly. At therapy Monday night, MS and I discussed how her behavior was hurting us. It was raw and painful, but we came to some decisions as we drove home to better address her pain and keep us sane.

We got to try it out as soon as we walked in the door as DQ was fighting with my mom.

Tuesday morning, DQ fought more.  I got her to school, but it was not easy. And at 11:00 am, school called because DQ had a nosebleed that led to a migraine. DQ asked to take a nap then and did so until MS could get there. DQ had missed so many days of school already because of pain, then this. My head couldn't help but think we'd have to pull her from school if no answer was found to the migraines.

By 1:00pm, MS was there to take DQ to the dentist (a horrific experience on the best of days). Then the dentist tells DQ she must give up her pacifier because her teeth are showing signs of its use.

Needless to say, DQ did not take the thought of losing her only comfort item in this cruel world very well. Neither did I. I sat there, thinking of my sweet little girl, in so much pain (that may have been caused by medicine I gave her), and we were supposed to take away her only comfort item--her only tool to make it through needle pokes, migraines, and nightmares! I was angry and sad.

Thankfully, after crying quite a bit, our PCP said the dentist was crazy and DQ got to keep her pacifier. Her comfort was and is more important than orthodontia she is not likely to ever get!

Drained from all of that, we had a snow day. I was staying with the kids trying to work,  when I realized I typed a deadline wrong.  I had a brief due on the snow day and not the next day.  I had to draft it all and file it while addressing the needs of the kids!  WTF! I never make those errors,  but I did with that day!

Thankfully,  MS came home early to help. Just as I hunkered down to finish, the cardiologist called. I was calm during the call. I took it in stride. But as you already know, it broke me.  I mean how screwed up is it to get a phone call that made me hope I was giving my daughter toxic levels of digoxin. SERIOUSLY, HOW SCREWED UP IS MY LIFE TO HOPE MY DAUGHTER HAS TOXICITY!!!

After migraines, sildenafil, loss of pacifiers, fighting, emotional trauma, and work deadlines making life hell, I certainly didn't need toxicity or the worse alternative in my life. Our lives. I'm ready for some good news if only the universe would conspire for good and not evil.


You get bad news often enough, you prep for it. You're hardened. Start thinking: "Bring it on; I can handle anything."

But I can't.

I can't handle most things. In fact, I've been broken so many times, it is a wonder it is possible to break me any longer. Yet, here I am shattered into billions and quintillions of pieces.

I don't know if everything is wrong or nothing.

DQ wore a holter monitor last week for 48 hours. It wasn't the first time she's done this. Hopefully, it won't be the last.

The cardiologist called yesterday. Three years ago when DQ did this test, she had 261 PACs--premature artial contractions. Everyone has those. They are no big deal. But, last week, she had well over 10,000 PACs. I think the word was 10,800 or 10,600. What I KNOW I got right was that 3.8% of the time, DQ is having PACs. This is not necessarily a concerning number in and of itself. It is quite a change though.

Three years ago, DQ had no PVCs--premature ventricular contractions. Last week, she had 51. Again, not that big of a deal.

BUT, DQ had 6 times with 3 PACs in a row and a couple times with 2 PVCs in a row--cuplets. Those could be something. Those are a heartbeat away from dangerous tachycardia and other horrible things that could happen. That I can't type.

But, I think it all.

The cardiologist's first thought was DQ's digoxin dose may be off and she has toxic levels now. We are trying to get her blood tested ASAP to find out. Hopefully, that can be turned around quickly and get her back into a better rhythm. Hopefully, that leads us to an easy answer.

But what if it doesn't?

It hurts to think what could happen and I can't stop myself from thinking.

Tears have been flowing all day.

People walk into my office and  I try to wipe my face, but it's no use. I'm just a mom with a child in hospice, given bad news. And once again, we're in limbo land with no answers and so many scary questions.

This may be a blip, but it could be so much worse. And I'm broken.

Tuesday, November 17, 2015


Good morning, sweet girl! How did you sleep?

"Good, Mommy."

Are you ready for the day?

"Yes, I guess."

What's wrong DQ?

"My best friend ("BF") plays with lot of other kids now and won't play with me or eat lunch with me any more."

I'm sorry to hear that.  You know, friends come and go as you both change and grow and interests change. She is probably meeting other kids in her new classroom that she wants to know better, just like you are.  It doesn't mean you have to lose the friendship you've had or let go of the warm memories.  You can keep her in your heart even if she chooses to play with other kids at recess. 

"But I miss her and I want to play with BF."

I know, honey, it's hard when friendships change, but it is part of life.  Everybody goes through this from time to time.  One of my favorite quotes is: ""It happens sometimes. Friends come in and out of our lives, like busboys in a restaurant."

Then I had to explain what a busboy is and the Dancing Queen asked: "But why do friends go?"

There are so many reasons, baby.  Sometimes you start liking different things.  Sometimes the friendship is a reminder of something one friend doesn't want to remember.  Sometimes there's fights. Sometimes you just become separated by distance. There could any number of reasons or no real reason. It just happens.  That is part of life.

"But Mommy, BF's dad told her she was no longer allowed to play with just one kid all of the time so she cannot have lunch with me or play with me any more."


"Why would he say BF can't play with me any more?"

I had to do some very fast thinking and try to hide the anger and frustration I felt at this man I have never met.

Dancing Queen, I don't know why specifically he wants BF to not play with just one kid, but lots, but I can imagine he feels this way for the same reason we send you to the school you attend.  

"Why is that, mommy?"

Well, did you know your school is one of the most diverse schools in the state?  There are all types of kids with all types of backgrounds at your school. With so many kids with parents from around the globe, you get to learn different things and the more cultures and backgrounds you are exposed to, the better person you will be because you can understand more. I would guess that BF's dad wants her to learn about other people so that she can have a broader knowledge of people and understand more about life.

"I don't understand, Mommy."

Do you remember the many conversations we've had about people doing bad things to others simply because those people looked different or believed differently?

"Yes. They shot Martin Luther King and killed people in Paris because they were different."

Yes. One way to help stop that sort of hate is to get to know other people, different from yourself, with different backgrounds, different cultures, different religions.  Because as you get to know people who are different than you, you realize that . . . 

"We may be different on the outside, but we're all the same on the inside."

Exactly.  Think about your class.  Does everybody look the same? Do they all have the same skin color? Wear the same clothes?

"No, but Mommy, if they looked inside me, they'd see I'm different."

When we say we are all the same on the inside, we're not talking heart and lungs.  We're talking feelings.  Each of us feels sad sometimes; each of us feels happy, angry, lonely, scared sometimes.  We are all the same on the inside because we all feel--just like the movie "Inside Out".  That is how we connect with other people--through feelings, through talking and learning that we all feel.We can all hurt and be hurt.  We can all laugh and smile.  We all love.  Everyone has that in common.

"But Mommy, why would BF's dad not want her to play with me?"

My guess is that BF's dad wants her to talk to lots of people, to learn about them, to connect to them, so that she can understand more people and learn different ways of life. And by telling her to play with other kids, he's not saying she can't be your friend any more, just that she needs to meet more people and get to know them. Just like you became friends with V for the first time this year.  She is from a very different culture than us, right?

"Yeah! The Indian dance she does is so fun and different."

But you two are similar on the inside, right?

"Yeah. We both laugh at the same things."

BF's dad probably wants that for her too.

"I guess."

It's okay if it hurts. You are allowed to hurt when you can't play with your best friend much any more.  But remember, this is your opportunity to get to know somebody else as well. No matter what happens with BF, you can still keep her in your heart.

After hugging my sweet seven-year-old for a very long time, she slowly walked away to brush her teeth.

Hours later, I still can't shake the feeling that washed over me as DQ told me all of this. I was sad, angry, frustrated, hurt, all of the above and so much more.

I've been dealing with DQ and friends (or lack of friends) for yearsShe's never quite fit with her agemates, but BF was different. BF loved her even through their differences.  The girls lit up when together.  BF would push DQ in her wheelchair so DQ could come along. BF is one of those girls all of the others want to be like, but she would choose DQ to talk with and laugh. 

Earlier this schoolyear, DQ was not invited to BF's birthday party.  I knew about this through Facebook and it hurt, but DQ did not know (at least she did not tell me).  I figured the girls were drifting apart, but after that, whenever they were together, the girls were the same as always.  There'd be a ton of other kids around and BF would seek DQ ought to have fun together.

Then, this morning, learning that BF's dad doesn't want BF to be best friends with DQ any longer, it all came together.

BUT WHY??????

If DQ has been mean to BF, shouldn't I have been told?

DQ would have told me if they had had a fight. She always tells on herself.

If DQ and BF were transitioning apart, why would BF be forbidden to play with DQ? Let the friendship take its natural course. 

The only reason for forced segregation of the girls, at least in my head, is because DQ is dying. Logically, I can see  a dad rationalizing that ending the friendship before DQ dies would make the death hurt BF less.

But . . . REALLY? 

Teaching your child to abandon (and ostracize) their terminally ill friend because being close to them is too hard seems like a totally fucked up lesson.

Maybe that's why so many people do cruel things in this world: rather than facing the hard lessons, people choose the easy way out and go around the mess. Personally, I feel like we need to  admit that life is messy and part of growing up is learn to deal with the mess, even though it is unpleasant and hard.

Maybe I'm all wrong. But if DQ has done something wrong (other than dying), I wish they would talk to us so that she can know how her behavior affects others.

No matter what the reason behind BF's dad's decision, it sucks and it hurts that two kids who were the best of friends have to be torn apart rather than life taking it's natural path.
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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