Wednesday, March 30, 2011


This post is adapted from a post I did on May 21, 2010 on the Dancing Queen's carepage. I've been thinking about it a lot lately. I started this blog because posts like the one below were too much for the carepage. After all, the primary purpose of the carepage was simply to let friends and family know how DQ was doing. It was only after writing the updates for months and months that I realized the catharsis I would experience with each post. As things got more and more real on the carepage (i.e., less cheery), I would get fewer comments from friends and family, but lots more comments from heart moms. Unfortunately, people in my "real" life didn't like to hear my fears or anger at the situation we were dealt, so I stopped putting it in the carepage. Then the blog was born because I missed the catharsis. For me, this blog is merely an extension of the carepage, but most of you do not know the hundreds and hundreds of posts I did for the three years preceded this blog, so I'm giving you a glimpse with this post below.  For those of you have read it, I apologize for the duplication.

May 10, 2010

When I was a little girl, I was in a car accident in the mountains of Tennessee. I was the in back seat with my sister, my grandfather was driving, and grandma was in the passenger seat. It was raining so hard that the car stalled in the middle of the road. We couldn't see anything for the rain. Then I heard it, the screech of a car's tires. I knew we were going to be hit and I waited for the impact. It seemed to take forever even though it was seconds at most. I remember that moment. To this day, I can hear the screech of the tires and then the feel of the rain on me because the back window had broken. The trunk was in the backseat with my sister and I. The front seat had fallen backward at us. They had to use the jaws of life to cut open the door to get the Editor and I out. We were all fine. Seat belts saved our lives.

That is how my life feels these days. I'm constantly in that moment just before the crash, but I don't know if I'm wearing a seat belt this time. I brace myself each morning as I open the bedroom door to the kids' room, hoping that everything will be fine, but always knowing that reality may be running me over in the next second. My daughter is very sick. She is not healed and she won't be. She suffers from diseases of which there are no cure. We still have hope that she will begin to feel some relief from her symptoms, but the reality is that she may not get any better than she is today and likely will get worse. She will have good days and she will have awful days. I am prepared for this and I expect it. The hard part now, is figuring out where we fit in broader society knowing what we know.

The life we now live is much different than anything I knew a couple of years ago. My peer group consists of heart moms, moms of kids with pulmonary hypertension, moms of kids with DiGeorge's Syndrome, and moms of kids with all of the above. In my peer group, I learn of the death of many children, children for whom I have grown to care. With each passing, I break a little inside. Many people from my other world wonder why I would want to part of this group. My answer is simple: they understand. It is important to belong to a group of people who understand your life, who knows that there may not be a cure, there may never be days without problems, but that sometimes all you want is to know is that you are not alone.

As I've entered this new world, my perspective has changed. I now know there is nothing that you can say to someone facing their worst nightmare, except to let them know that you are there for them. I have experienced the joy when a miracle takes place because they do. The hard part of this is that while my perspective has changed, the majority of the world hasn't. I find it very difficult to answer the question "How is the Dancing Queen?" Many times, I answer that she is not in the hospital or she is good for DQ. People outside of my new world don't want to know that we've upped her diuretics again because her heart is leaking more, that she tires easily, that any virus or high fever could kill her if we don't catch it quickly enough. The Mad Scientist says that I still paint a rosy picture on the carepage, even though it is not as rosy as my initial posts. I want everything to be okay, but it's not.

Since DQ has been released from the hospital, she has had a rough time. None of the antibiotics have worked. Whenever her body gets a little bit down, she ceases to eat and her face swells up. The swelling is caused by her heart working too hard and the blood being pushed the wrong way because of it. When we get her "healthy" again, even for a day, we know she can easily be back down again the next. So, I'll wait outside her door and brace myself before entering because I never know whether I'll get hit.


Please keep in mind that this post was written at a much darker time. This was before the Dancing Queen's last open heart surgery, before there was any thought she could improve. You may ask why I am posting this then. The answer is because it is still a huge part of who we are and I fall into this place frequently even if she has improved. And most of it remains true today. I ended it to reflect more of a current status then the one that was originally included. I have to admit, not much was different, except now we have reached the point where antibiotics don't work. We didn't have that problem a year ago.

Tuesday, March 29, 2011


I have been trying to hide from reality the last couple of days and instead it has been smacking upside the head over and over again. The Dancing Queen has not been well. Her ears have been bursting. She has been crying whenever she sleeps and blood and gunk has been oozing out of her ears, nose, and down her throat. That was our weekend. Add disappointing the kids, throw in professional worries, and you start to get where I have been. Oh yeah, and DQ had to be put on antibiotics again. She made it almost a week off of them this time. It took the doctor longer to figure out which antibiotic to give than the rest of the appointment combined. I seriously hope her immunologist starts her on a better treatment soon. It is so frustrating.

So, all I wanted to do the last couple of days was hide. In all honesty, that is what I want to do whenever life gets too real. It's not like I asked to be the mom of a special needs child. The one hope the Mad Scientist and I had when we were pregnant is for healthy children. While I always said I would unconditionally accept a special needs child into my life and meant it, I didn't really think it would happen. This was not the life I had planned.

My life is so much better than I could have ever imagined on most every day.  But days like the last couple make me wonder how to do it all. What do you do when your baby cries all night long from pain, but upon waking she says nothing is wrong? And you know why she says nothing is wrong is because she is so accustomed to pain that when awake she doesn't realize her agony? How do you get medical staff to understand that ear tube surgery may be routine for kids and can usually wait a month, but my child's ears will burst repeatedly if not taken care of sooner (which is why the doc ordered it sooner)?  And I'm not trying to pull priority just because this is my kid? Rupturing ear drums happened during the summer as well. Am I supposed to just accept the fact that every six months my daughter is going to have one month of her ears causing her extreme pain and rupturing over and over and over again because the tubes are falling out? How do you teach a child that the world is wonderful when they have been in pain every day?

I know that my daughter knows life is wonderful. She has taught me that more than anyone, but it is not fair. I learned that life was unfair many, many years ago, but it is so much harder having to teach my babies that lesson. I try to shield them, but there are no shields big enough. At ages 4.5 and 3, they know life can suck. This weekend, they got a big lesson in suckage. All I wanted to do was hide myself from their disappointment and anger in learning that lesson. Obviously, I couldn't. Now I hide in every other way.

At least I didn't totally melt down. I think that would have happened if I did have the counterattack of a date night with my hubby.  Even on the date, the Mad Scientist and I could not get past the stress. We never had the moment of release the tension we carry around at all times. The intensity of this weekend was too much. So, I'm still hiding.

(By the by, my previous post about fears of DQ's night cries turned out to be heart burn due to a change in her GERD meds, not ears at that time. The ear problems came back about 3 days after she stopped her last dose of antibiotics and a couple of days of good sleep after we started her back on her GERD meds at night. The best part was none of it was related to her heart.)

Monday, March 28, 2011

Should I Go to Law School?

I am often asked questions simply because I am a lawyer. The most common question is: "My daughter or son, my neighbor's nephew, my boss's girlfriend's daughter is applying to law school. What advice should I give them?"  Of course, this question can be started even more ways than I provided. I've even had a check out lady at the grocery store ask me what I did for a living and immediately upon finding out, ask me for her daughter, a sophomore in college, but who is destined to be a lawyer.  Occasionally, I will even have a real person who is thinking of law school talk to me.

My answer is the same for whomever asks:  Think really, really hard about your decision. There is no going back. Student loans are non-dischargeable. If they don't want to be a lawyer, they shouldn't go to law school. Law school itself is hard work, long hours of preparation, and grueling classes if it is done correctly. You can skate by, but you won't be prepared and you'll be wasting money and annoying classmates who take it all seriously. But, long hours in law school are quickly passed up by even longer hours working as a lawyer. Even if you've worked 36 hours straight, you will still be expected to shower, slap on a smile and go mingle with hundreds of other attorneys to properly network.  You will owe the equivalent of a mortgage in student loans and most attorneys don't make enough to cover two mortgages. That means you will have your education, but where will you sleep? Perhaps in your office because you'll feel like you live there anyway with the hours you will put in.

Okay, this is my sarcastic version of the advice I provide, but it is all true. I make sure people know most lawyers don't make tons of money. That student loans are equivalent of a mortgage for a house that you will never ever be able to sell, burn down, or lose to a hurricane. There is no insurance plan if you suddenly can't use your law degree.  The hours suck. I emphasize thinking about it really hard, following around a real lawyer doing real work, working in a law office as a messenger or copy person to see what the culture is like. I always make sure people know that I love being a lawyer. If I had to do it all again, I probably would. But, I didn't have a clue what I was getting myself into. I am lucky that I love what I do (even if I don't like the hours).

One of the biggest myths propagated by law schools is that a JD opens up lots of career opportunities and you don't have to be a lawyer. Of course, many people who went to law school do not work as lawyers. And yes, you can take a myraid of career paths with a JD.  BUT, why would you? If you are not going to be a lawyer, don't go to law school. Go to school for what you want to do. Don't know what you want to do, get a real job for a while and figure it out.

Of course many people will tell you that their JD made it so the could start in another field. But think about it. Those people are not going to tell you they wasted $120K on a career they didn't want or couldn't do.  The fact is many law school graduates don't like being a lawyer. They don't like the hours. They don't like research. They're no good at it, so it is not fun. They don't like negotiating with jerks on the other aside. They never found their niche in the law that fits their style. Or that niche area was so concentrated, they couldn't get a foothold in. There are many niches in the law that any competent attorney should find a love, but sadly, some people don't find their niche and go elsewhere. If people thought more about what they want out of life before going to law school and thought about what their strengths are, then they would know if it is the correct decision.

One last thing needs to be said here. I've broached it twice earlier, but did you see it?  There are two types of people who most definitely should not go to law school: those who plan to only skate by and those who are not capable of being a lawyer. Unfortunately, those people still go to law school and the schools do nothing to weed them out.  There are people who are extremely smart and talented who just don't do well in law school. They can't get it.  Those are people I felt should have flunked out after the first semester so they could find their true calling. And those people stuck out like a sore thumb! Instead, they didn't flunk, but were at the bottom of the class.  Despite working really hard and trying, they never did any better and they were kept in school. As the years went by, the confidence they once had because they were smart and talented was lost due to being the bottom of the class. They did graduate from law school, but could never pass the bar. While I don't pretend to think the bar exam is a good measure of your worth as a lawyer, I do know people who I thought should have failed first year who could never pass the bar exam. I blame the law schools. They had to know these people couldn't cut it. Instead of forcing them out early before they were loaded with debt, before they had this degree people expected them to use, the schools made them wait to face this music at a much different phase of their lives.  It's not right and it is a serious consideration for anyone who thinks that law school is the place to be.  What if you can't cut it? How will you know? And are you prepared to cut loose without anyone telling you to do so? I only know one person who did that. He was smart. Dropped out in the middle of the first semester and went to med school instead. I hope it worked out for him.

Finally, the last type of person who should never go to law school:  the skaters. Since people can make it through law school trying real hard and failing, the people who don't try, can still skate on by. While they may be able to be lawyers, they turn into skaters in real practice, which makes more work for the rest of us. Always trying to take the easy way out seems like the fast track to ethical problems if you ask me. As lawyers, we are bound by an ethical code. The quickest way to an unintentional violation is not knowing what you are doing and taking the easy way out instead of doing the work.  Not doing the work, trying to skate by, getting ethical violations, those are the things that give lawyers a bad name. I'd rather those people put their laziness elsewhere.

Thursday, March 24, 2011


I have nothing in me. I've started two posts and ended each in the middle of the second paragraph. I feel like saying something, but I have nothing.

This has been a hard couple of weeks and I don't know when it will get better, if it will. I am beyond grateful for the life that I have, but somedays, I think it would be easier if I were irresponsible. I would love to sleep in after a night where I was not woken several times by crying. Then take a long hot shower without the worry that if I don't hurry up, we won't make the bus. No fighting to get the kids dressed, fed, medicated, and out the door. No rush to get to work. No hassles. An adult conversation over a long lunch, without needing to get back to work.  Spending enjoyable time with my children in the evening without any yelling or fights. A quiet and yummy dinner with my husband and a comfy bed to fall into. Repeat that for a couple of days, throw in some leisure reading, and I think I might be rejuvenated.

Instead, I've stayed up too late. The Dancing Queen will most definitely cry out, needing me as soon as I get comfortable in my bed (which is no longer as comfortable as it was 7 years ago when I bought it).  DQ will cry out again around 2:00 am and 4:00 am, then maybe again at 5:00 am. I will inevitably not get up when my alarm goes off at 5:30, so I will rush in the morning, trying to get my kids to move as TRex fights me about using the toilet (really???  who doesn't have to pee immediately upon getting out of bed???).  I will fight with my daughter in an attempt to get her to eat.  She won't eat but three bites of whatever I give her (that she will choose!).  My son will fall out of his seat because he refuses to listen to me when I tell him to sit on his bottom. I will get the kids to school after they fight over whose turn it is to choose the music in my car (because news is not acceptable). And I forgot the foot chase that precedes the car when the Dancing Queen takes off down the sidewalk because she thinks its funny. I will rush to work, where I will be forced to drink the swill they have for coffee because in my rushed morning, I will not have time to make good coffee and if I forgo the coffee, my head will likely explode. I will work, get interrupted by emails from another part of my life. I will spend way too much time on that. I'll eat lunch at my desk. Stay way too late at the office. Get home and eat dinner at 9:30 p.m., watch some tv, then crash too late.

No wonder I have nothing.

Tuesday, March 22, 2011

A Glimpse

I have had many conversations with fellow heart moms regarding our husbands. It seems that many men internalize their feelings regarding their child's defects. There is no discussion of the what-ifs, the fears, the problem at hand. It can be very isolating. But, today, just now, I got a glimpse.

The Mad Scientist told me that he listened to this week's Moth podcast--it was the story of a man facing his two year old daughter's cancer and what it is like for a dad. The Mad Scientist explained that he related totally. I had to listen immediately. I have been wanting to know what goes on in my sweet husband's head for years now.

So, I listened. I cried.

I'm posting this now so maybe other heart mom's can listen and maybe get a glimpse. Please be warned, there is some extreme foul language, but it is more heart-wrenching than anything.

It is a glimpse.

Moth Podcast of Anthony Griffith's "Best of Times, Worst of Times"

Not Rebels, Revolutionaries

Why are the protesters in the Middle East and North Africa constantly referred to as rebels? I don't get it. The rest of the world is apparently supporting these people in their fights against dictators. (Seriously, didn't the U.S. and other countries start bombing Libya over the weekend to protect the "rebels" from Qaddafi?) I have heard the regimes in power called illegitimate. Why then are the people fighting these illegitimate dictators called rebels? Shouldn't they be called revolutionaries?

The term rebel makes me picture someone who is going against the rules, but not in a good way. It seems to lessen the import of what is going on, especially where lives are being lost.

I understand that it is uncertain whether a true revolution in leadership will occur in some of these countries because it remains to be seen whether the regimes will be ousted. I further understand that these "rebels" may not end up in power if the current regimes are ousted. Finally, I understand that even if new leaders are elected, the governments may act in the same manner.

However, I don't think there can be any question that no matter what happens, this is a time of change. These people, coming together, fighting their oppressive dictators are taking part in a revolution. They are changing the very fabric of their existence. Even if these particular people are not successful, I don't think the world will ever look at the Middle East and North Africa the same again.

Isn't that a revolution? Don't the people effecting this revolution deserve to be called something more than rebels? Aren't they revolutionaries?

Monday, March 21, 2011


Before I became a parent, I was sure that the parents were totally to blame if their kids ended up the stereotypical girl or boy. So, when I had kids of my own, I made a conscience effort to allow TRex to play with whatever he wanted, doll, car, pink, blue, whatever. Likewise, when my the Dancing Queen was born, it didn't matter to me if she played with dolls or cars, dinosaurs or bunny rabbits. My kids were going to be who they wanted without influence of stereotypes, at least to the extent practicable.

The thing is, about a year ago, I noticed that TRex and DQ will play with the exact same toys in completely different ways. TRex would take two cars and slam them together because they were fighting. DQ would take the same two cars ten minutes later and push them together, while making kissing noises. Where did this difference come from? I specifically played with the kids the same. These were the same toys. Both children were given the same number of kisses and hugs (well TRex has received more due to 17 extra months with us, but you get what I mean).

That was a year ago. In that time, I've noticed more boy things that TRex does and more girl things that DQ does. TRex pushes, bumps, and play fights all of the time. DQ kisses, dances, and loves purses. As DQ turned three, she has suddenly turned into a pretty girl. (BTW, party went great and DQ had a blast.) DQ now wants her clothes to match. She must wear pink. And her favorite gift was a baby doll. While TRex enjoys playing with the doll too, its not the same manner. And there is no way I can get him to dress up or care about matching anything. All I have to say to him is I have a dinosaur shirt and he is game. DQ wants butterflies on her shirts.

How is this possible?

I guess the only explanation is that there are differences between boys and girls or at least differences between my two children that happen to fall within the stereotypical descriptions of boy versus girl. No matter. None of it is bad. It is life. I have to support the decisions of my children. After all, I talked myself into buying the baby doll for DQ. My gut said she wanted it and my head screamed "You'll be turning her into a stereotypical girl! DON'T DO IT!!!!" My gut won and she loves dolly. The first thing she told me this morning was "Mommy, somebody is waiting downstairs for me in her bed. She needs her pacifier and stroller." (Later, she called me Ma as she strolled dolly around the house because she was Mommy, but that is a post of a different day.)

I can still raise an independent girl, with a strong self-worth, who does not think less of herself even if she is girly. And I can still raise a respectable boy, with a strong self-worth, who does not place himself above girls because he is a boy. Can't I?

I guess we will all have to learn to respect the differences in each of us, even if those differences fall into a stereotype.

Sunday, March 20, 2011


I have a lot of opinions. Opinions about politics, about government, about the law, about healthcare, ethics, morality, duty, and so much more. These are the things I thought I would write about when I started this blog. The problem I have is how to state my opinions and not run counter to my professional life. It's not to say that I represent clients who are diametrically opposed to my personal opinions and beliefs, but I never know who the next client may be and I don't want to take a position that could hinder that relationship or my representation of that potential client. That leaves me in a bind.

It is safe to say that I tend to have liberal views. I don't like political parties though. I think allegiance to a political party rather than a core set of beliefs is causing our country to only care about elections instead of governing and care about popularity rather than what is right. Somehow politics is no longer about compromise, but about giving prizes to the people with the most money spent on the topic at hand and lambasting the people who didn't put enough money on the table. It's not right. Any of it!

Unfortunately, I don't have answers. But, I can say this. I believe in taxes. I don't believe in wasteful government. I don't believe in earmarks that skip the majority vote process. I do believe in providing the country a strong military. I do believe in providing our men and women who fight for us with the proper equipment. I don't believe we should continue to concentrate all of our resources based upon terrorism, but based upon our national interests. Really, terrorism is not new and is not going to be stamped out through killing and violence. I do believe in free speech. I do believe in the power of the people. I don't believe corporations are people. I do believe we now live in an oligarchy dressed up as a democracy. I don't believe that is right.

I am scared by what I see in the news. I am scared that unions are being destroyed so that corporations can make more money. I am scared that making money is more important than saving lives. I am scared that education is being sacrificed to cut deficits, but taxation is not considered because the ultra-rich are willing to pay millions in lobbying rather than pay taxes to cover education.

I believe we are better off living in a society and by doing so are responsible for each other. I don't like it when people do nothing and get a check because I work hard. But I don't believe all people are like that. No child deserves to go hungry. No mother should have to chose between seeing their children grow and putting food on the table for them. We will only continue to lose our grip on power in this world if all our children are not given the chance to succeed, if they are all not fed, and if they are all not provided healthcare. I don't understand why our priority is on lowering taxes and not on future generations. Without the children, none of this matters.

Thursday, March 17, 2011

Restless Nights

I'm sitting here, staring at the baby monitor. I feel like I do that constantly these days. The Dancing Queen is not sleeping well. AGAIN. This has been two weeks now. She is tossing and turning and making lots of noises, obviously not comfortable or in her normal sleep patterns. She has been crying out uncontrollably at least twice a night as well for the last two weeks. There is no self-soothing. Either the Mad Scientist or I must go to her.

I am petrified.

The Dancing Queen only "sleeps" like this when something is wrong--when she is in pain. I think it is her ears. After all, it was a little over two weeks ago when she finished the course of the big gun antibiotics. Two days later, this horrible sleep pattern started. Two days after that, she had the signs of another infection and was started on low-level antibiotics (well, low level for her, big guns for most people). I honestly think she still has an ear infection over 12 days into this 14 day course of augmentin.

Part of me really hopes that is what is going on. At least we are working on that problem. The Dancing Queen will have her current ear tubes removed in a week and a half and we are working with her immunologist on finding another way to fight bacterial infections. Those are promising solutions or at least something proactive.

What I am really scared about though is that an ear infection is not the true problem. I've noticed that the last couple of mornings when I must rescue DQ, the first thing I hear when I enter the room is her heart beating so hard. I know that her heart beat is loud because of her mechanical valve, but it seems louder to me every morning. Are my ears playing tricks on me?

At the same time, DQ's heart rate, sleeping, has been about 130. That is fast, especially asleep. Although not terribly fast for DQ with her poor heart function and high pulmonary artery pressure, but scary nonetheless. Asleep, her heart rate should be at most 100, not 130. Granted, I don't know the last time we saw a sleeping heart rate of 100.

Then there are the other signs. She has been waking up swollen. That is DQ's tell that her heart is working too hard. Her tricuspid valve regurgitates, pushing blood up to her face. Once she gets her morning dose of lasix, she seems better, but it is one more thing for me to worry about. Are her pulmonary pressures rising again? Or is it that her ear infection isn't allowing her to properly rest, so her heart doesn't get the break it needs?

We were told only a couple of weeks ago that DQ's heart is the best it has ever been and there is nothing more to be done. Yet, her heart rate is so fast compared with what it should be. It is damaged (and healing still maybe). How long can a heart that has suffered so much damage already and is currently working so much extra last? I asked the Mad Scientist this tonight because it weighs on me a lot, especially with all of the other symptoms I see. His answer "I don't want to think about it and I won't." I wish I could have that mindset, but I don't. I know there is no answer and I know exactly what DQ's cardiologist would say (she doesn't know). Still.

I'm petrified.

Wednesday, March 16, 2011

Three Years

Three years ago on this night, I went to bed, but never slept. It was the last night that I knew my baby was safe. 

The Dancing Queen turns three tomorrow. I knew three years ago, that once my sweet baby left the warm confines of my womb, she had to breathe on her and circulate blood by herself. She was safe while I could do it for her, but on her own there were no guaranties. The fear of the unknown is one of the hardest things to deal with. At that time, so much was unknown.

Three years into this heart mom thing and I still don't know. I don't know what the future holds. I don't know the answers nor which way is up most of the time. But, I now know that you don't need the answers. Plans can be changed (that was hard to learn for me). Life has a way of moving forward no matter what you do or do not do. There are no guaranties in this world. I know that now and I'm not searching for them any more.

Best of all, I've spent three years getting to know one of the most amazing people in this world. I've got to be her mom. And for that, I'm a better person.

Happy Birthday, Sweet Angel!

Monday, March 14, 2011

Smokers Need Not Apply

Just read that a local hospital is refusing to hire smokers and is requiring nicotine tests before hiring. In the interest of seeing whether this is a new or a trend, I searched the web.  Apparently, hospitals are refusing to hire smokers all over.  The theory is to promote a healthy atmosphere and to save on healthcare costs.

Perhaps its the pessimist in me, but I wonder if this is an across the board decision or only going to work against the lower level employees? Are hospitals truly willing to forgo hiring the hot shot surgeon or specialist to head up a lucrative department simply because she or he smokes? Perhaps I'm jaded, but I've seen a ton of doctors who smoke and I've also seen hospitals only care about the bottom line. I don't believe any hospital would choose not to hire the hot shot doc.

Saturday, March 12, 2011

Baby Fever

I will admit it, I have baby fever. People are having babies all around me and it makes me want to have another. I had always wanted three children. After TRex was born, I had convinced the Mad Scientist that three was the way to go (before that, he thought two was the perfect number of children for a family). I pictured it in my mind. We would have TRex, the Dancing Queen, then baby Tierdan, a perfect little boy to round out our family.

All of that came to a screeching halt at some point after the Dancing Queen's diagnoses in utero and before we brought her home from the hospital. Despite being in deep denial regarding the Dancing Queen's prognosis, the Mad Scientist knew we couldn't handle more. There were too many doctors appointments, too much added expense, and too little time for a family of four, so adding another child would not be wise or fair to any of us. And, of course, the fear that this could happen all over again was crippling to the Mad Scientist (even if he won't admit it). At the end of the day, he has his two amazing children that make the perfect family.

I agree with all of that. Personally, I think fear of the unknown is something we should stand up against, but practicality won out. And of course, I do have the perfect family already. I mean, look at those beautiful children.
The Mad Scientist was snipped almost two years ago. No more babies for us.

Still. That doesn't stop me from wanting another baby right now. My cousin has two boys around the same age as TRex and the Dancing Queen. She just had her third. Many of my sorority sisters have had babies recently. Two heart mom friends just had babies in the last month. One was born a couple of nights ago. I just want to snuggle a new baby and kiss them. Fall asleep with a newborn in my arms.

I know many women go through this from time to time. I recall my mom saying she needed a "baby fix" on more than one occasion. But, I think a lot of my wanting a baby is that with TRex, I took the snuggles for granted. I remember clearly how he would fall asleep in my arms and how much I loved it, but I still don't think I appreciated it enough. I long for that feeling again.
I never really had that with the Dancing Queen. The way I was able to first see my sweet baby was a picture on the Mad Scientist's cell phone. As soon as she was cut from my body, she was swept away. I learned that she had red hair from nursing students in the recovery room. I had sent them on a mission to learn how my girl was doing as my vital signs were being closely monitored following my c-section. Hours later, I was able to hold the Dancing Queen for five minutes before she was transferred to the children's hospital. By that point, she was on oxygen and hooked up to many IVs and had already had her first echocardiogram.
Hours later, after she was settled in, I was rolled to her room (there were connecting tunnels between the hospitals) and we couldn't hold her any more, she was on a ventilator. The next day, the Dancing Queen had her first heart catheterization. At three days old, the she was scheduled to have her first major heart surgery. Instead, she spiked a fever and had an extraordinarily hard day. Through all of that, all we could do was rub her head and try to hold her hand. I didn't get to snuggle with my newborn. I got to sit on an office chair and look at her hooked up to many IVs, a picc line, a ventilator, and she even had a 15 lead EKG on for her entire third day because she had episodes of SVT (really fast and dangerous heart rate). There were no hugs.
On the Dancing Queen's fourth day, she had a miraculous improvement and the ventilator was even able to be removed. We were able to hold her (and felt guilty doing it in the NICU surrounded by other parents who could not hold their newborns). Friday, Saturday, and Easter Sunday, we were able to hold our newborn.
On that Monday, she had surgery and she remained intubated (on a ventilator) for about a month. We could not hold her during any of that time. To get her to calm down and stop her silent cries (you can't make sounds on a ventilator because no air can move the vocal cords), we would rub her head and hold her hand. She laid in a hospital bed and most of the time, she was heavily sedated and on pain meds. We couldn't even allow her to wake up for more than a couple of minutes because she would work too hard and cause herself damage. So, no falling asleep in mommy's arms. There was no falling asleep really. She was knocked unconscious.
Even off of the ventilator, the Dancing Queen was still in a hospital bed until she was 2 months old. While we held her, it wasn't all that comfortable because she was still hooked up too many lines and tubes. The Dancing Queen was fed breast milk, but I pumped and then she was fed through a feeding tube. We didn't get that closeness. When she finally came home, she didn't really want to be held. She preferred to be in her swing or bouncy seat.
Today, the Dancing Queen loves to be held. There are many times she doesn't want to be put down. I'm grateful for those moments. But, I can't help but mourn the fact that I never got to make the special memories of holding her close as a newborn. I was never able to make her feel safe and comfort her in my arms as a baby.  I long for those moments that can never happen. For that reason alone, I have baby fever. I know it won't satisfy my longing , but it sure would be fun to snuggle with a new baby once more.

Friday, March 11, 2011

Date Night

I want a date night. Just a simple date night. A night where my husband and I can go out and enjoy a meal while it is still hot. There will be no threat of a child vomiting all over the table and the humiliation that follows. A glass of wine can be enjoyed over a discussion that is not interrupted every two seconds. And I'm pretty sure if we got this date, I wouldn't have to yell to sit down and face forward.

I love date night.

For a little while we had a date night every two months or so, but I don't think we've had one since our anniversary in November. Nope, I didn't even get a night out for my birthday. Granted, we did get a night out in February when I worked a wine tasting and silent auction for the non-profit organization of which I am a board member. However, that night was not what I would call relaxing, especially with horrid driving conditions caused by a freak and surprise snow storm. And I didn't really get any time with the Mad Scientist.

Date night is more than just getting out. It is a time to reconnect with my husband, a time to remember we chose this life together for a reason. My husband is my best friend and even though I see him every night, I miss him. While I can't pretend we won't talk about kids on our date night (I know we will because we always do), I do know that date night recharges our relationship. We need this. 

The Mad Scientist was trying to make a date night happen this weekend, but it is a no go because there is nobody to watch the kids. I really need to find a responsible person to watch my children for an evening. I would pay well, but they can't be afraid of the Dancing Queen and they have to be able to give meds and breathing treatments. Any suggestions of how to find the perfect babysitter?

Wednesday, March 9, 2011

We Survived!

It is official. The Dancing Queen made it through her first day of special education preschool. She rode the bus all by herself, waved goodbye to me as if it was the most natural thing in the world. And by all accounts, she had fun.

Apparently, she climbed the steps than ate breakfast in her car with a smiley face. Since I know she was working with the physical therapist today, I'm guessing she was in the gross motor room that has little quarter-size steps for climbing and there are cars to ride in.

She got off the bus just fine, got a big hug from her brother and ate a second lunch. This is all wonderful since since feeding is always an issue and her two lunches equal about 1/2 the size of a normal 3 year old lunch.

I survived as well. I cried a lot today, but I know she will be fine. She will convince everyone else of her amazing abilities and no longer will they worry that she is fragile. I had mentioned the fragility to her preschool teachers this morning and they laughed. The Dancing Queen just started at this preschool 3 months ago and at the beginning, all of them were freaking. So, time will help everyone.

The one disappointment though was not snapping a picture of the Dancing Queen getting on the bus. It was raining and I was too busy trying to lift her on and worrying about the car seat situation. Then I forgot to grab a pic of her sitting on the huge school bus all by herself. She looked so small and tiny, but waved and said "goodbye, mommy." Gosh, she is simply amazing. Hopefully, my mind's eye will keep that moment fresh forever.

Tuesday, March 8, 2011

Fragile: Handle With Care

The Dancing Queen begins special education preschool tomorrow. She is already in regular preschool, but this program is through the school district and is designed to help her catch up physically to other kids her age.  Spending 1/6 of your life in a hospital bed will slow you down and DQ does not have the endurance nor the strength to do what most kids her age do. Then you add on top of that her DiGeorge's Syndrome, with really long fingers and deep webbing between the fingers and she can't perform the fine motor skills required of the average three year old.  Finally, you add hemihypertrophy and the 3/4 of an inch discrepancy she has between her right and left leg, balance is an issue. She does wear a lift (and has braces for her ankles, but those are related to her very first surgery back at 7 days old).  Anyway, there is a lot of work to do to allow my baby to catch up, so she is starting the new new school tomorrow.

All of this has me beyond emotional. I spent the entire IEP meeting last week in tears thinking about this. I've spent more time crying throughout the last week thinking about this. I balled on the phone with the Editor about this. I told her it was because I didn't like the thought of the Dancing Queen in the special education classroom, but I don't think that is all of it. I had thought that my emotional outbursts were due to DQ being grouped with other kids who are cognitively behind her because I don't want her thinking/socializing development stunted simply because she is weaker than the average 3 year old or can't do a pincer grip.  While that all that is a concern, I don't really think the teachers would be holding her back cognitively, nor socially.

I discovered today that my main problem is the way all of the teachers have been approaching this transition. I have learned that not only does my daughter need special education, but she needs a lot more help than I thought. She is even different than the kids in the special education preschool. She doesn't even fit in with her peers! It is frustrating and scary. If you can't fit in in special ed preschool, when are you ever going to fit in? It is hard enough to be a kid (kids are mean), but then you don't fit in anywhere?!? How is that possible?

I hear you saying: "But are they really singling her out?" I don't know, but it sure feels that way (and yes, it could be my own baggage once again).


The teachers discussed how DQ will likely need adaptive writing devices as she ages because she will not have the endurance to write. Maybe lots of kids can't write in school because they get too tired, but I doubt it.

When I learned the times for the class (8:55 am to 11:55 am), I freaked out because DQ wouldn't get back to her regular day care in time for lunch and if she doesn't eat right at noon, she won't eat because she will be too tired. None of the other kids have this issue. So, they had to accommodate it, which is great, but adds to my list of "one of these things is not like the others".

Then, when they gave us the tour of the school, they made a particular point of identifying all of the ways they try to minimize germs, specifically saying while nobody else has the immune problems DQ has, we do this and that.

I don't know how many times I heard that DQ will get special treatment above and beyond the other kids.  While it is great that they are taking care of her, it just reminds me no matter how hard we try to keep it all normal, she is not.

That was all last week. The straw that broke the camel's back though happened today when I was desperately trying to find out the logistics for tomorrow. I was concentrating on DQ catching the bus, getting lunch, what I needed to pack, and smack, they hit me over the head with it.  The Dancing Queen is the most medically fragile of the kids in the special education preschool.  Fragile . . .  I have never thought of DQ as fragile (except maybe when she is hooked up to tons of lines and I'm trying to hold her and I don't want to pull the lines).  But, fragile is never a word I would use to describe her.  The Dancing Queen is rough and tumble. She faces life head on. She doesn't care about princesses, she is not into delicate things, and all she wants to do is play soccer and swim (okay, she does like purses, but who doesn't?)

DQ's "medical fragility" has led the school to take her out of the classroom with the kids her own age and close to her own size. I was so excited that DQ would finally be around kids who were close in size to her, still bigger, but closer (at her regular preschool, all of the little girls, age 3, use DQ as the live doll they dress up). Yet, because of her fragility, the special ed preschool is now placing DQ in the 4 year old classroom instead of the 3 year old room.  There are less kids in the older class and the teachers can monitor her better and will be able to accommodate feeding her in that class versus the younger class. Part of me is happy that DQ will be in with older kids because the cognitive delay I was superficially worried about shouldn't be an issue, but . . . FRAGILE.

This "fragility" also persuaded the transportation department to move DQ up on the bus drop off schedule, for which I am grateful. But, who wants to think of their child as fragile or more fragile than the others? Seriously, a preschooler should not come with the label "Handle with Care". I am afraid they will be stand-offish with DQ because she is medically fragile. That is the last thing I want. We are set on allowing her to experience life. I just need to be sure that her needs are met while letting people know it is okay to let her do things. She might turn blue on you when dancing around, but she'll sure have fun doing it!

How do you teach people that delicate balance we play everyday?

Sunday, March 6, 2011

Lessons from the Past

Reading and writing have never come easily to me. No really, M.O.L., the lawyer, who reads and writes for a living, struggles with the written word. Most people who know me personally find this statement funny.  I mean, laugh out loud funny. I mentioned this weakness to both the Mad Scientist and the Editor this week and both of them laughed and not in a mean way, but they just couldn't imagine it. All of these feelings have raised to the surface this week with the TRex kindergarten meltdown.

My first grade teacher was highly inadequate. I don't say this lightly, but it is true. She was not a good teacher. In fact, I had this same teacher again when I was old enough to properly judge her ability and smart enough to recognize incompetence.  My first grade teacher also taught my french class in 8th grade because the district had wised-up and stopped messing with the education of small children. At the time, I might have pitied her incompetence, lack of control, and blatant inadequacies, if all of those things hadn't made me realize WHY I felt stupid for my entire life. I did not properly learn how to read in the first grade as a consequence of inadequate teaching, although I didn't know that at the time.

I struggled with reading and I couldn't spell at all. In second grade, I was placed in remedial reading classes, which I continued in until third grade. In third grade, I had one of the best teachers ever and our class totally concentrated on reading all of the time and I finally caught up to where I was supposed to be, yet the trauma from being in remedial classes and not knowing how to read and write was hard on me. I remember the beginning of third grade clearly. The Editor was starting first grade and her reading abilities were tested to be at the sixth grade reading level.  Me, at the beginning of third grade, two years older, and I was at the second grade reading level. I felt STUPID.

In the fourth grade, I underwent testing. I didn't know what for at the time, but I do remember one question "how many days are in a year?" I answered 305. I knew it was wrong and I also knew that whatever they were testing for, I had failed. Turns out the testing was for the gifted program and I was placed in it. Everything changed after that. Being told I was smart changed my outlook and I began to have confidence and started to excel. I still felt inadequate in reading, writing, and spelling, but I faked it because the school thought I was smart. It was at this time though that I realized I excelled in mathematics.

I continued through the rest of my primary and secondary education at the top of my class, excelling. I graduated number 2 in my class from high school. I won awards for everything and I was in all of the advanced classes for english by high school. Math was still my strongest point and I still felt my abilities in the written word were substandard. It was an advanced placement government class in high school that formed my love for the law. I didn't know if that was a feasible option though because I still didn't feel strong enough in my abilities with the written word.

I went to college, was placed in the advanced english program, and ended up with a degree in mathematics. I always planned to go to law school after college after the government class. I felt my love for the law in the core of my being. The law was me, totally and completely. My love for the law over-powered my fears of reading and writing, but they still persist.

After three years of law school and eight years of practice as an attorney, I am confident in my ability to read cases and write briefs, memos, letters, etc, yet I still feel I could do better. I know I read much slower than many people. I know I misspell words frequently (as any regular readers of this blog know). It makes me very self-conscience.

I don't want my children to feel the same sort of inadequacies. I want them to be confident in their abilities. While I know I can't protect them and there will be things that they struggle with, I also know there are some things that can be prevented. That is one of the main reasons I melted down over TRex's progress at school and being told he would need to be placed in remedial classes even though he is a smart kid. He wasn't drilled enough or taught enough at home, so he would be behind the rest of the kids from the beginning. That is not appropriate and is my failing, no matter the reasoning. I don't want to set him up to fail, so we are going to be working with him harder, preparing for kindergarten. If he's not ready, I won't send him.

Friday, March 4, 2011

Crying Uncontrollably

This has been one of the most emotional weeks ever, I think.  I seriously have spent a large portion of today crying.  Why?  I'm not really sure.

I cried this morning when Dancing Queen told me she was all alone at school.  I cried the entire time I wrote the post about it. Then, I got to school with the kids, saw that the Dancing Queen was having fun.  She was playing all alone, putting a baby doll on the indoor slide and laughing as she slid, alone, but having fun.  I was okay with it.  I went to leave, then I remembered that I wanted to ask how TRex was doing in school.

TRex is 4.5. He will be five in August, right before kindergarten is supposed to start.  We have him registered for all day kindergarten next year, but we don't know if he'll be ready.  He is a very smart kid, but he doesn't know what he should know.  A lot of that is a result of the Mad Scientist and I concentrating on the Dancing Queen's health. TRex is taken care of, but if it doesn't have to be addressed immediately, it is not.  During the majority of 2010, we dealt with trying to save the Dancing Queen's life. I searched for doctors, hearing countless times there was nothing more to be done, we flew across the country for a second opinion, and finally, in September, she underwent her third major heart surgery (second open heart, third time splitting her ribs).  Needless to say, I didn't sign TRex up for pre-K in September.  He was in a day care facility where many children stayed and learned just before going to kindergarten.  He was loved.  It was a second home for him since he was 3 months old and he was comfortable, something he needed while his sister was in the hospital and mom and dad were there too.  He needed normalcy and comfort when we were dealing with a surgery that nobody thought was actually going to work.  Who knew the outcome?  She could have been worse.  TRex's sister was literally dying, we were taking our last stand.  He needed constant support from people who loved him. 

The Dancing Queen's surgery was more of a success than any of the doctors told us to expect (okay, we were told to expect nothing). So, in December, we placed TRex and the Dancing Queen in a real preschool, with a pre-K.  We were told TRex would be in that pre-K class and they would catch him up.  Turns out, the pre-K teacher wouldn't accept him, he was too far behind.  So, he was learning the same things, just on a slower time frame.  The teachers were supposed to tell us if they thought TRex wouldn't be ready for kindergarten in the fall.  With his emotional state thus far, his close relationship with his sister and her frequent hospitalizations, we simply didn't know if he would be ready to be the young kid in the class and still succeed (and we still don't).

We hadn't heard anything about TRex's progress, so this morning, I asked. I was informed that TRex is not only behind from the pre-K class, his peers, but not even near ready to enter the pre-K class.  And here came the waterworks.  While I was busy concentrating on saving the Dancing Queen's life, I had let TRex fall behind.  He is an extremely smart kid.  He knew every letter of the alphabet in capitals at the age of 17 months and almost all of them in lower case too.  Now, at the age of 4.5, his teachers tell me he can identify 3 letters.  Yes, just 3.  (Granted, they claim he can only count to 5 and when he plays hide-n-seek he counts to 10 without issue.  I don't know if I'm worried about TRex or the school I've chosen for him.) I have failed him.  The teacher went on to tell me that they assumed TRex would be going to kindergarten in the fall, so they left no space for him in the pre-K class.  I started to ball harder.

Tell me, what am I supposed to do?  I can't go back three years ago and say, don't concentrate on the Dancing Queen quite so much.  You are failing TRex.

The teachers want to push him forward, no matter what.  Their schooling has taught them that when you are 5 you go to kindergarten no matter what. No matter that you spent your preschool years worrying about whether your sister was going to come home from the hospital (which he constantly worries about).  No matter if instead of learning flashcards at night, your parent snuggled with you because the other one was sitting at a hospital bedside.  No matter what, at 5, you go to school.  I cried and cried.  Then, the teacher told me "don't worry, there are remedial classes for him." So, now my bright child will need remedial classes because I failed him so.  WHY WOULD I SET HIM UP FOR SUCH FAILURE WHEN I HAVE EVERY RIGHT TO HOLD HIM BACK BECAUSE HE WILL BE AT THE INBETWEEN AGE?

I did ask that question, probably not in those words, not so coherently, and with a lot of eye wiping involved (luckily the kids were running around, having fun and didn't know mommy was crying.) The teacher said it is best for him to go to kindergarten, to have structure.  But, around here, parents routinely hold their boys back, whether it be more emotional stability or to get ahead in sports.  I could care less about TRex's sports' career 10 years from now.  I just want him to feel safe and secure in school and not feel like he is drowning. I cried as I left and as I drove to work.

I then went to work.  I cried there as well upon learning a institution that I hold dear will probably be gone soon. 

Later that day, we learned the Dancing Queen will be undergoing a procedure in the next two weeks.  Ear tubes for the third time in 15 months.  Her current tubes are falling into her ear drum.  Yes, I said falling in. While this is not normally much to have concern about, it is one more thing to add to our stress of March on top of finally getting the Dancing Queen's hemihypertrophy looked at over year after she was first diagnosed (and one of the main complications of hemihyptrophy is kidney cancer).

And why do they have to put tubes in so quickly?  Of course it must be done quickly because there is a concern about infection and her body can't fight infections any more.  But, if I concentrate on fixing these things and saving her life, I am making TRex go further back.  It is a no win situation!!

I got home from work around 8:00 p.m., after the kids were in bed.  (That would be every night this week.)

Luckily, my break down this morning at school helped.  The Mad Scientist informed me, that as of this evening, the school has reserved a space for TRex in the pre-K room for next year.  They will definitively let us know whether they think he will be ready for kindergarten in a couple of months, notwithstanding their view that all 5 years olds must go to kindergarten. They finally understood where I was coming from.

And, the Dancing Queen told me (cause she wasn't sleeping like she was supposed to) that she played today with lots of friends.  Perhaps, it was a phase.

Perhaps I cried all day for no reason.  Perhaps I am losing my mind.


How is it possible that I am sitting here this morning trying to explain to my almost three year old why she has to play alone at school?  I thought I could wait until junior high for my kids to be ostracized or at least kindergarten.  But no, apparently, something about the Dancing Queen makes it so other kids won't play with her, at least in her mind's eye.

Since she has been back at school following her hospitalization, she has cried hard when being dropped off. She won't let me leave without running to me each morning. She fights me every morning, saying she doesn't want to go to school.  She doesn't like it.  She is visibly sad.  I have been trying to figure out all week what is going on.  I had noticed that the kids weren't gathering around us like they used to before the Dancing Queen's hospitalization.  Before, they were waiting to play with the Dancing Queen.  Now, she is usually by herself for the time when I am there. TRex told me that the Dancing Queen always asks to play with him, but he doesn't want to play with her at school, so she plays with nobody.  My baby plays with nobody.  Nobody.  At play time, there are three classes of students, well over 30, and my baby is all alone.  She isn't even 3.

I talked to the Dancing Queen about this.  I tried not to put words in her mouth.  I asked her who she played with at school.  She told me "I play alone."  I asked, "you don't play alone all of the time, do you?"  She said, "I play alone and I am sad, but then I come home and play with Ma, then I'm happy."  She sees her Ma about once a week.  This breaks my heart.  I asked if the Dancing Queen shared toys when she played with the other kids and if she was nice to them and I didn't really get a response.  I tried to explain that if she was nice and shared her toys, they'd probably play with her and she told me "I'll play alone and then come home and play with Ma."

This is very, very hard.  We have always had the Dancing Queen in daycare and now preschool.  She has always, always loved it. She usually loves people and loves, loves being around them.  That was what made it easier when she was hospitalized from being sick.  We could never imagine taking her out of society just to keep her healthy when she loves the world and society so much.  We want her to have as much life as possible because she generally relishes it.  Now, she is miserable. I know it is likely a phase, but seeing my baby so sad, telling me she plays all by herself, makes me want to jump into action and force those kids to like her, to play with her.  She is simply amazing and they are missing out.  She has the most amazing imagination and the games they could play would be fantastic.  But, I know I can't force preschoolers to do anything, especially preschoolers I don't know.

Thursday, March 3, 2011

Favorite Things

I have been too negative on this blog, so I wanted to share some of my favorite things.

1.  I love hugs.  Hugs from my babies.  Hugs from my hubby.  I love hugs.

2.  A nice glass of wine at the end of a long day. Preferably on the dry side.

3.  Playing games.  Card games, board games, or video games (Although I prefer to watch the Mad Scientist play video games--he listens when I tell him what to do most of the time and he can do what I cannot.  It is interactive, even for me.)

4.  Chubby Hubby ice cream by Ben & Jerry.  What's not to love?  It is chocolate covered, peanut butter filled pretzels in vanilla ice cream with chocolate and peanut butter swirl!
 5.  My Kindle, even though I don't get to read that frequently. 

6.  Steak. A well-aged, perfectly cut filet, seasoned perfectly, cooked medium rare.

7.  Music by Lori McKenna.  I haven't found a song of hers yet that I don't love.  For each of my family members, I have a song of hers that makes me think of them (of course, the first song for the Mad Scientist is our song, "In My Life" by the Beatles).  Here is part of the Lori McKenna song that makes me think of my life the most.

Wednesday, March 2, 2011

One of Those Weeks

This has been one of those weeks that I wonder how can I continue.  Something has got to give.  And it has.  Once again, my health gave away.  I've been sick the last two days.  That is my trade off.  I raise two kids, maintain a marriage, work as a full time litigation attorney, keep a house, yada, yada, yada, but there are only so many hours in a day, so I don't exercise as much as I should.  I don't spend the time that a truly healthy diet requires.  I get warn down from lack of sleep.  And I get sick.  Frequently.

My health is the part of me that people don't see or pay attention to or discuss with me when they look at our life.  I don't see how it can be missed.  I am a short, very round woman.  To me, my health (or lack thereof) screams itself known as soon as I walk in the room.  I've aged at least 10 years in appearance over the last three years.  (I was looking at pictures of TRex's 1st birthday this morning.  I looked soooooo much younger.)  I don't want this for myself, but we are still in survival mode.  We are working day to day, just trying to stay over the water.  That doesn't leave time or energy for more.

Yet, one of the most common things that I am told by people is "I couldn't do it."  People frequently tell me this after asking about the Dancing Queen or learning we've been in the hospital again or just hearing what is on my plate (even other heart moms who know I work full time or know I am an attorney). I guess they don't link my flabby exterior to everything else I have on my plate.

I have two regular responses to this statement: (1) "Yes, you could.  It's what any good parent would do." (2) "I have no choice."  In my head though, I'm yelling: "Give me a break!  You mean 'thank goodness I don't have to do what you do.'"  Perhaps that is pessimistic of me, but I don't believe my family is all that different from any other family, except we won the lottery of bad luck.

There is no known cause for the Dancing Queen's chromosomal abnormality and while it is likely that her heart defects are caused by the chromosomal abnormality, nobody knows for sure.  I did everything I was supposed to do.  I stopped drinking and caffeine before I started to try getting pregnant.  I was on pre-natal vitamins before.  I didn't eat soft cheeses, lunch meat, tuna, canned foods, etc. I didn't smoke and I would leave the room if someone else was smoking.  I did a ton more, but can't remember now (probably cause I am sick).  But the point is, it happened and we are stuck with it and we do what we must because there is no other choice and there never has been.  This is my family and I will make it work because it has to.


Since I have a hard time not being accurate when I write, there is one caveat to the penultimate sentence of this post.  Technically, we were given the choice of all choices when we learned of the Dancing Queen's conditions in utero.  However, to us, there was never a choice to not protect our baby, but that is a post for a different time.
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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