Friday, October 28, 2011

My Kids

This morning, as we got ready for school, I asked TRex to put his library book some place safe so it was not lost. He chose to place it on the topmost shelf in my bedroom, where no other books sit, right next to a picture of me.  That made the Dancing Queen say "That is a picture of you, Mommy."

I responded "Yes, it was taken on the trip your daddy and I took to Chicago just before we got married.  And the poem on the picture was written by your daddy to me as a gift on our wedding day."

TRex and DQ then decided I had to read the poem because they didn't think it was possible that their daddy had written a poem. (Little do they know that before the Mad Scientist became a YouTube Pooper, he wrote poetry all of the time; lovely, poignant, thoughtful poetry. But, I digress.)

So, I read the poem. And TRex asked "Mommy, why did you and Daddy get married?"

The Dancing Queen squealed with delight and shouted "So Mommy could be a princess! And daddy cried because he loved mommy so much."

Before I could respond, TRex gave her a very serious look and stated "No, mommy and daddy got married so they could have us."

How sweet are the pair of them!

Tuesday, October 25, 2011

I Hate Waiting!

I am so exhausted. I don't mean tired. I mean I am exhausted to the core.  I have nothing left. Waiting is killing me.

It has only been a week since the Dancing Queen's cardiologist confirmed one of my worst fears. We are still waiting to hear the plan; to learn when DQ will have her seventh heart catheterization. I'm no good at waiting. And not knowing is so hard on me.

On top of that, I had to sit and wait in the hospital surgical suite for DQ today as she underwent a sedated brain scan hearing test. Waiting to hear how much damage has been done to her ears from multiple explosive and horrible ear infections. Waiting to hear whether we'll need to add further procedures or devices. I hate waiting. 

DQ was so good, but fairly miserable after from having an empty stomach and being under anesthesia for over an hour.  (Not to mention the vomiting/dry heaving she did from 4am through just before going into the OR because of how scared she was.) For the rest of the day, she wouldn't allow me to put her down for even a minute. As I held her, all I could think was why did she have to suffer through so much! The emotional roller coaster of it all takes a huge toll.

Tomorrow, I have to sit with the Dancing Queen in the same office I sat almost 2 years ago. I get to wait for the same doctor who gave me no hope 2 years ago; wait thinking that I have to ask him the same exact questions I did 2 years ago. Even worse though, I have to wait in that office, talk to that doctor, with so much more knowledge. And I have to list for him how often DQ gets sick. I need to convince him that something more needs to be done. That his decision to not help her immune system is only damaging her more and causing her heart and lungs to be overworked. Somehow, in my weak mental state, I have to stay sane in this situation. I have to keep my composure and not scream at him after I know he will make us wait for at least an hour (he is always late). I can't cry in his office. If I do, he won't help my baby because he'll just think I'm an emotion mom. But, frankly, I don't think I can keep myself even-keeled. (I can't even write this post without tears stinging my eyes.)

Sunday, October 23, 2011

22 Things

I was reading one of my favorite blogs, A Belle, A Bean, and A Chicago Dog, and she was participating in Mama Kat's Writer's Workshop. I had to copy because I loved the post so much.

Without further ado, I am almost 35 years old and I have never:

1.  Run for public office;
2.  Been to Europe;
3.  Ridden a motorcycle;
4.  Taken/smoked illegal drugs;
5.  Stayed awake for the entire length of "The Terminator";
6.  Visited a strip club;
7.  Skydived;
8.  Landed my own paying client;
9.  Swam with dolphins;
10.  Scubadived;
11.  Been admitted to practice before the Supreme Court of the United States;
12.  Vacationed at the Grand Canyon;
13.  Watched a show on Broadway;
14.  Tipped a cow;
15.  Witnessed a drag race;
16.  Liked coconut;
17.  Walked on stilts;
18.  Surfed;
19.  Given birth naturally;
20.  Argued an appellate motion;
21. Forgotten how it feels to have a newborn fall asleep in my arms; and
22.  Given up searching for help for my daughter.

Prompt 1.

Thursday, October 20, 2011

Tatooed Freaky People

I work in a mid-size law firm, where everybody knows everybody. From all appearances, it is very conservative. In fact, it is very conservative, unless you get into political affiliations (but that is an entirely different story). Everyone wears suits every day, except Friday, where business casual is accepted, but many still look very formal.  Once a year, when we clean our offices out, we get to wear blue jeans. But that is it.

Me, I've always been more casual. Jeans were my uniform. My senior year of college, I never wore matching socks (mainly because it really bothered one of my friends and that humored me). When grunge came into fashion, I finally felt like my style became main stream.

Of course, as a lawyer, in this conservative firm, I wear suits on weekdays. I am the professional. But for nine years, I've harbored this huge fear that I would be discovered. Somebody from the firm would learn that not only are my political opinions liberal, but I do not fit in a world where people weekend at country clubs and wear cardigans instead of sweatshirts outside of the office.

But my biggest fear was that someone would discover I am a tattooed freaky person.

You can catch a glimpse of the tattoo in this photo.
I have two tattoos. One, I got after much thought and deliberation. It is placed on my back and easily hidden. Let's just say that the other one was obtained in the opposite manner and is not as easily hidden.

Seven or so years ago, one person in the firm saw my tattoo and the reaction was crazy. It was as if she had learned I was formerly a mountain goat. And she was not a person I was concerned about seeing the tattoo. And once the shock wore off, she didn't really care one way or the other, but it was completely the opposite of what she expected. That is not consistent with the firm image.

Needless to say, that encounter has stuck with me and made me even more afraid of letting people "know".

At least until tonight.

Tonight, we had a happy hour after work for all of the attorneys. This is not something we do frequently--hardly ever in fact. It was nice. I really enjoyed it. I work with a lot of really great people. And talking to them outside of the office has made me realize that all of us have a little tattooed freaky person in us somewhere, even conservative, straight-laced attorneys.

I'm still not going to let the tattoos show, but I now know that it wouldn't matter if people I work with every day learn I wear jeans on the weekend. We all have our roles to play at the office. But that is not who we are all of the time. It is nice to realize that I am more like the rest of them than I thought.

Tuesday, October 18, 2011

There's A Monster in My Bedroom, Mommy

Can you hear it--the oxygen machine humming at the top of my stairs? It is so much quieter than the machine we had a year ago and infinitely quieter (and cooler) than the machine we had three years ago.

Even though we've had oxygen in the home for about 1/3 of the Dancing Queen's life, starting it up again was not easy. She cried and yelled "No! No! No! I don't like oxygen!" over and over again.

Finally, it was time and we had to fight her to get it on. I mean, we were having to hold her down and everything.

She finally gave in after the Mad Scientist and I explained:  
The oxygen was medicine. She needed it. Her lungs and heart were getting sicker and she needed the oxygen to help her sleep. She would feel better.
So, I placed the cannula in her nose, the tubes around her ears, and laid her down. Then, with the saddest face, she asked "Will you stay with me mommy?" I kissed her forehead and told her "No, but I would be sleeping in my room, right next door. You can call me if you need me." She got so very scared and I could barely hear her say "But the doctors will come in."

The Dancing Queen was petrified that she would be awoken in her sleep, in her own bed, in her own room. She was afraid they would poke and prod, conduct tests, provide treatments. The horrors that little girl has lived through without understanding why. The nightmares she must have. The ones where she screams out. The pain she has endured. I've watched countless times as the nurses and doctors have done things to her, pinning her down, as she screams. I've pinned her down . . .

Here, we had brought all of that home. Or at least that is what DQ's 3.5 year old mind thought.

My poor, sweet baby was petrified for a week that the doctors would be coming to her home to torture her like they do in the hospital. Perhaps she didn't realize that fear until it became real. Perhaps the fear only existed in that moment. But, she spent all of last week as we were waiting for the oxygen to come, crying about monsters in her room. I don't think it is a coincidence.

Of course, the Mad Scientist and I explained that nobody would wake her, except for mommy getting another kiss. She smiled at that. We reminded her that no doctors will come to her bedroom. That TRex would be there with her and Mommy and Daddy were a second away. She went to sleep.

We've had no problems with the oxygen since then. It has become routine again in a couple of short nights. And the monster has not returned to DQ's room.

Similarly, the seriousness of this "new" life has become routine again. Unfortunately, I haven't figured out a way to keep the doctors and monsters out of my bedroom when I try to sleep at night. Somehow they keep me awake when not even around.

Sunday, October 9, 2011

Etching Memories

I laid in my bed this morning, listening to my family playing games with each other. The laughter was infectious as my babies delighting in their pretend adventures as pirates. I ran downstairs; the crocodile in me had to chase Cap'n Hook. When I captured him, we all laughed. I reveled in the sounds and embraced the moment. I tried to etch it all in my mind so I would never forget; never forget the sounds, the smells, the visions, the feeling, the love.

I've done this often--try to capture a moment in my mind. But we were recently reminded how fragile life can be and how all of this can go away in an instant. So, this moment, this morning, I tried extra hard.

I had started to feel like it was possible that the Dancing Queen would have a future. She would grow up. She would go to college, choose a career, be an adult. I began to think that would be possible. She has been looking so good, even sick. I thought we had finally moved passed the hard part. I could put off the major worries for at least a couple of years. Yes, I would have to be concerned about viruses and stuff like that, but the big things, like heart failure and lung disease, could just be underlying issues that are only part of our life in that DQ takes daily meds. I was getting there.

Friday came and changed it all. DQ's pulmonary hypertension is back. That means her heart is working too hard to oxygenate her blood and the pressure from it all damages the pulmonary arteries that are already inadequate. DQ's heart and lungs are being damaged. And the more they are damaged, the harder they have to work to oxygenate DQ's blood. It is a vicious circle and eventually, the damage will be too much. Unlike last time this happened, I already know what choices we have. I've already called all of the specialists. I've heard all of their answers. I know they have nothing to offer.  There is nothing to save her. NOTHING. nothing.

I have always felt in my gut that DQ would die young. I've hated myself for it. I've fought myself over it. I've tried to wish away the feeling. I've tried to will it away. I've even told myself that she will live to adulthood, figuring if I said it enough, my heart would believe it eventually. But my logical side keeps throwing questions as me: how long can her poor body last when it is beat up everyday? How long can an itty bitty heart that has been cut into and sewn shut, pruned, and messed with so many times keep working when it is forced to work so much harder than it should? How can her poor little lungs that take a beating daily keep working? Muscles can be overworked. Her poor little heart is worked so hard. And while it is healthier than it was a year ago, we've now reached her peak (or likely did a couple of months ago). Her heart will start declining again. What does that mean? How much time do we have?

I know nobody ever knows how much time they will have with their loved ones, but today, I wish I could believe that my baby will live a long, happy life with just enough troubles to know the value of hard work and just enough sorrow to appreciate when life is good. I want her to fail and learn from it. I want her to light up in wonder at the sight of winter's first snow. And I want to see her drive a car for the first time. I want to walk her down the aisle as she marries. I want to help her move into her own home and see the wonderful woman she will become. But, I can't even see how any of it is possible.

Today, I am making memories because these may be the only ones we get.

Please don't think by my writing my feelings down that we won't be doing something for DQ. I will be pushing like I always do. I've already started the process to have her placed on oxygen at night again. We will be getting her back on meds for PH. And should it progress, I will push for other meds even though the docs think they won't work. I won't be giving up on my baby. I love her too much.

Thursday, October 6, 2011

Arrr, Matey!

And yes, they did go to the grocery store dressed like this.

Wednesday, October 5, 2011

Thank You

Thank you all so much for your words and support after my post yesterday. I really appreciate it. 

The Mad Scientist and I took TRex out to dinner without the Dancing Queen last night (she went with Ma) and had a nice long talk. We told him everything we thought he ought to know. We explained DQ's broken heart more, we explained the seriousness of it. We even told him that there had been times when we didn't know if DQ would come home. Of course that scared him. We told him that we get scared too and it was okay.  We also assured him that the reason we take DQ to so many doctors and take her to the hospital and give her so many medicines is because we are doing everything in our power to keep her healthy. We even told him how he helps. And we tied it all back to DQ's wish. But most importantly, we let him know he could ask any question ever and he could let us know if something made him angry, sad, or scared.

Overall, I think it went very well. We did expect some questions, but he had none. Well, at least he had none last night. As I drove him to school this morning, he bombarded me with all sorts of questions. Luckily, we had time and I was able to answer them. Since DQ got sick last night, TRex was scared. Instead of taking it out with anger, he talked to me about it. It was a very good morning. And the fighting has ceased (well, at least the over the top fighting we had been experiencing ceased).

We've always been open with TRex. We have never lied about DQ's condition, but we also didn't volunteer how desperately serious it was at some points. Yesterday was not the first time we had told TRex that having DQ in the hospital scared us. And it wasn't the first time we've discussed her prognosis. But I do think it was the first time it was not in the context of DQ in the hospital or just having surgery or a procedure. I think it was more of a wake up call to TRex that this is not going away. Couple that with TRex learning this week in school that most people don't spend much of their lives in doctors' offices and hospitals and it was a little mind-altering for the poor little guy. Hopefully, now that the dialogue has started, he will continue to feel comfortable coming to us when he is jealous or angry or thinks something is not fair.

I guess the next hurdle will be when he says something is not fair and he will be right.

Tuesday, October 4, 2011

Unintended Consequences

TRex has been acting out all of the time at home. He is constantly fighting with us. The only response he utters is "no" or the dreaded "neVAH". And I'm at my wits end. I was ever so close to telling him I was going to send him away this morning. I didn't. Thankfully. But, I am at my breaking point with his behavior.

TRex goes through cycles, like everyone. Somedays it is just hard for him to behave. That is usually a sign that something is wrong. He misbehaves until he is ready to spill the beans. Normally, he spills the beans from the back seat of my minivan as we drive to school (the exact moment when I can't hug him or look at him).

But this cycle has been especially bad. So, I waited as I drove this morning to hear what was going on. I got nothing.  I figured we'd have another horrible day and night.  Then, as TRex, DQ, and I headed to the gym where TRex attends the before school program, TRex let it out: he wants to know when he is going to get his wish. DQ is getting a wish and he wanted to know when it was his turn.

I was totally caught by surprise. I had assumed he was having difficulty in school or with classmates. I had no idea he was jealous of his sister. (Although that clearly explains why he has been especially brutal to her--not hitting or anything, but doing the opposite of everything she wanted, messing her hair, taking her toys, telling her no).

Looking back on it, I think we explained to TRex and DQ why DQ was getting a wish a year ago when it was first granted. I THINK we told them it was because the organization heard that DQ spent a lot of time in the hospital and wanted her to get away and not be in the hospital. But I don't specifically remember. And since then, we have all been concentrating on the trip to Florida. Everyone has been excited. We are all going.

I never thought about TRex getting jealous, but each time the trip is mentioned, DQ cries "For me! I made a wish!"

This morning, in the hallway of TRex's elementary school, I was caught off guard. How do you explain to a five year old that his little sister was granted a wish because she has life-threatening illnesses without scaring the crap out of him?  After all, this is the same five year old, who has worried in the past about his sister never coming home from the hospital. We don't shield him completely, but we also want life to be as normal as possible. So, I tried telling TRex that DQ was granted a wish because she spends so much time in the hospital and TRex gets to go on the trip too and have lots of fun because the organization knows he gets very sad when she is in the hospital. I told him how it is not normal for kids to be granted a wish. And that we all are part of DQ's wish. But, I don't think he got it. He didn't think it was fair.

The Mad Scientist and I plan on speaking with TRex again this evening. But how do we get him to understand that what our family faces is not the same as typical families without making him feel oddly different? How do we explain why some children are granted wishes without scaring him and DQ too much? Or is it best to let a 5 year old know the full truth, no omissions? Would that do more harm than good? He already knows so much, but he is so young.
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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