Wednesday, July 27, 2011

Wordless Wednesday: Typical Morning

The Dancing Queen is finishing her breakfast of chicken baby food, followed by meds (she takes between 9 to 11 a day--today 11).

Tuesday, July 26, 2011

Why Michigan Is Home

A month ago, I posted my hundredth post and promised if you asked me a question, I would answer truthfully. I have two questions remaining. The first is listing 100 favorite appetizers and desserts, which I think would be too difficult to do, so my truthful answer is sorry, you'll have to google appetizers or dessert for recipes.

The other remaining question is: WHY did you stay in Michigan? Why didn't you get the hell out like the rest of us? Did you always plan to stay there?

The truth is that I had no intention of staying in Michigan, especially the Detroit area. And I left.

First, I left metro Detroit. I attended undergrad as far away from home as I could and still be in Michigan. A full nine hours away from home and I might as well have been in an entirely different world because of the difference from the metro area. I loved it.

As the end of  college neared, I debated about going to law school (or grad school for mathematics) in a big city or the mountains. I never once considered returning to the Detroit area. I loved my family and missed them, but wanted more. I didn't know what I wanted more of--city or trees--but I wanted more.

I ended up going to law school in western New York. I became an entirely different person. I figured out who I was. I grew up.  And I knew I would not return to Michigan. My life waited for me in New York or DC.

Getting my hood!
Then, I graduated. And I studied for the New York bar exam. I studied a lot for the New York bar exam. I lived that summer only to study for the New York bar exam. And I took (and passed) the New York bar exam. I celebrated by taking a trip in Michigan. I spent a couple of days camping with my mom in mid-Michigan, then up to Mackinac with her, then went up to the U.P. for several more days with friends. It was a great trip and it reconnected me with home.

When I returned to New York and re-started my job search, all I could think about was home . . . Michigan. I couldn't keep my family out of my mind. I couldn't shake the idea that if I went to the big city, I wouldn't be back in Michigan. I wouldn't have easy access to lakes, wilderness, seasons, and the wonders of a city. Where else do you have it all? And not returning made me sad. No place could have as much to offer as Michigan, so I sent out a bunch of resumes to Michigan firms in a moment of nostalgia.

Two days later, I was jumping in the car to drive to Michigan for the Labor Day weekend with a lot to think about. I had been offered a job at a small firm in the city where I went to law school and offered another job in DC, working as a lawyer and web editor. I was heading home to think about it and see family before I moved farther away. As I was finishing packing my car, I got a call for an interview in Michigan the next day. I threw a suit in the car and went home. I was offered a job during the interview and accepted later that day. I started the Tuesday after Labor Day. The rest is history. I was home.

Monday, July 25, 2011

The Dark Side of Being a Heart Mom

I promised myself that I was going to be more up beat on the blog as my last several posts have been very introverted and not necessarily happy. But I couldn't shake this feeling I was having. I kept coming back to the same topic. It is something that is never discussed (at least not in any conversations I have had). So, this post needed to be written.

* * *

I have a digital picture frame on my desk at work. I last uploaded photos to it just before returning from maternity leave when DQ was three months old (yes, I keep meaning to add new photos, but time just seems to escape me). I look at those pictures nearly everyday, but don't necessarily see them. But today, I did. I saw myself six years ago, five years ago, four years ago, even three years ago. I was young, so very, very young.
One of the very last pictures taken of me before the Dancing Queen's diagnoses.

I look at those pictures and I can feel how much I have aged in the last three years (most of it in the last two). I know how much more unhealthy I have become. And I hate it! I hate everything that the last couple of years have done to me, done to my face, my psyche, my stress, my butt . . .

But what's worse is that hating what the worry, stress, and fear has done to me, makes me feel like a horrible mother. I don't blame the Dancing Queen for any of this, but if she wasn't born broken, born so very sick, I wouldn't have aged fifteen years over the last couple. I likely wouldn't weigh more now than I did when I was pregnant with her.

How can I think such things? Afterall, DQ is the one who has suffered so very much. Not me! She is the one who faces the rocky future, filled with more surgeries, too many pokes, and endless tests, scans, and appointments. I am not staring down that fate.

I wish I could take all of the pain for her and I would, if I possibly could. And yet, and yet . . .

I hate how I have changed for the worse since DQ was born.

Yes, I know, I have changed for the better in so many more ways. I have changed in ways that matter more than looks, grey hair, and a big bottom. And I would never, ever change anything about DQ. How could I? She would never be the same little girl that I love with all of my heart. And I would do it all again without hesitation. That little girl is my world (along with her brother and daddy).

But, when I see pictures of the person I used to be, I wonder how much better our lives would be if DQ wasn't broken. And I hate that I will never be that person again. That DQ will never know her mom the way that I was and TRex will never remember days without overshadowing worries. And as much as I love my new found appreciation for life, I also miss the person who was innocent enough to take life for granted.

Sunday, July 24, 2011

Social Media

I started this blog so that I could find a place to scream at the world, where I wouldn't feel so alone. And as the time has gone by, I've found that I enjoy yelling, crying, and sharing my ideas (at least those I can publicly share) with the world. There was one drawback to the blog--no real interaction. You lovely readers frequently leave me messages and I respond when I get the chance via email (if you leave your email address), but it wasn't *real* interaction, so I have expanded with other social media.

A couple of months ago, I added a Facebook page since I'm on there all of the time anyway. It has helped breed that interaction I so desire. If you haven't checked it, please do so and introduce yourself.

Then one of my favorite bloggy friends jumped to Twitter and the question became, should I do it too? So many other bloggers are on Twitter and there seems to be so many conversations/posts that get started there. The thought of joining in on the fun intrigued me. But, I didn't really want to do it. I was on Twitter and deactivated about three years ago. I joined when Twitter was new. I had less than ten people that I followed who weren't politicos or news agencies. I had only a handful of followers. It just wasn't interesting. I had learned enough for my purposes as an electronic discovery and evidence expert and left.

But now, Twitter is different. Everyone knows what it is. No longer is Twitter the new social media on the block and it is being used widely. So, because the neighborhood seemed so much more interesting, I jumped back on Twitter. I'm hoping all of you will help me find it more interesting. Give me suggestions. Tell me who is fun to follow. And how do I get rid of those spammers easily? (I've only been back about 5 hours and already have a spammer.)

Friday, July 22, 2011

Little Boy Love



As you can see, TRex is in love with Jake and the Neverland Pirates. TRex stopped having nightmares after his daddy made him this poster to watch over him as he sleeps. Thank you, Disney (and the Mad Scientist)!

Now if I could get Disney to start selling some toys related to Jake and crew, TRex might have the best birthday ever!

Thursday, July 21, 2011

Time

Time is a funny thing. Last year on this date, we were doing our final packing to fly out to California on our desperate voyage seeking hope. That was a lifetime ago. Yet, when I look at my children, I marvel at how quickly they are growing; how much they have changed in such a short time; and feel like it goes by too quickly.

How is this dichotomy possible? How can time fly and seem to take forever all at once?

I'm trying to reconcile the fact that DQ is still wearing the same exact clothes she wore last summer, still comfortably in the shoes we bought for last July, and still weighs the same (pretty much), with the fact that since last summer, I have been three totally different people. Before our trip, I was frantic, clinging to the hope that Stanford held our miracle. After that trip, I had learn to cope with the real possibility that surgery wouldn't work and DQ wouldn't be here with us. Then, after surgery, I had to learn how to let hope back in, how to accept the good, the wonderful, amazing gift we had in DQ and her marked improvement. To me, it feels like all of that growth and change took years and years.
Same outfit, same kid,but the pictures were taken almost one year apart.
Obviously, not much time has passed, but it feels like an eternity to me
when I think about how much has changed with regard to DQ.
 But it also feels like it was just yesterday that DQ was a toddler, using sign language as her major form of communication. And today she is a little girl, who not only speaks full sentences and paragraphs, but she makes up her own song lyrics on the spot. And TRex, gosh, TRex. I can clearly remember the feeling of his newborn body, sound asleep in my arms, yet he is going to be five in a few short weeks. How could he be going to kindergarten so quickly? And why I can't the time I spend relishing my babies as babies feel as long as the time I spent on worry and self-growth and change?

Tuesday, July 19, 2011

Playgroup

A couple of weeks ago, I received an email from a new mom looking to join my working moms' playgroup. The one I started when I went back to work. When TRex was born. Five years ago. I politely informed her that the group would have been made up of five year olds if he had still been active and it ceased being active before the kids even turned one. She thanked me and started her own group.

The thing is, the working moms' playgroup never really got active. I tried my best to make the group work. I so wanted to meet other moms who were going through similar struggles--trying to raise a child, maintain a marriage, work full time, and keep the rest of life in balance. I planned an event once a month.There were six moms on the email list and only three of us ever got together at a time and usually it was only two of us. It is really hard to find a time where multiple working moms can get together, especially when toting the kids along for the ride.

When I got pregnant with DQ and was so, so tired, I didn't have the energy to plan any more play dates. Right after I regained my energy, we got DQ's diagnosis. That was the end of the playgroup.

Until I opened that email from the new mom, I hadn't really thought about the playgroup much (except when I do my taxes--one of the mom's husband is our tax guy). But since I opened that email, the playgroup sits in the back of my mind regularly. Not because I was close to the women. I barely knew them. And not because TRex missed the other babies. He was under one and went to day care. He had loads of friends and interaction, so those playgroup kids were blips on his radar.

I guess part of me wishes for what I was trying to build back then--friendships with people who understood where I was coming from. If I had become friends with even one of those women, I could then just call her up and hang out, get a drink, talk to someone in person. But, that didn't happen.

Don't get me wrong. I have plenty of very good friends, more than I probably deserve. But my best friends (besides the Mad Scientist and he is not a girl) live in different states--four different states. If I want to go out for a night, it is a big production that requires at least a month of planning or six months. There is no casual dropping by, no spur of the moment "I need to escape, HELP ME" nights. And that is unfortunate.

How do you make new friends (outside of work) now that you are an adult?

Sunday, July 17, 2011

Unfair!

I have been leaving my children at day care since both of them were three months old. Of course, the first time I dropped off TRex, I was paralyzed with fear. I couldn't concentrate on anything except whether my precious baby was okay. And he was. As the days went by and TRex loved his day care providers, it got easier to drop him off. It was never easy, but easier to leave him behind. Then the separation anxiety phase hit and he would cry his little eyes out when I left. Those were hard days. But, he and I made it through those days and he was once again happy as soon as he got to school and didn't real mind mommy leaving.

Then the Dancing Queen was born and poor little TRex, all of 17 months old, had his world turned upside down. He had no idea why he was shuttled between people. He did not know why mommy and daddy weren't home. He had never met his sister and had no concept of a sister. And to top it all off, he didn't know who would be picking him up or dropping him off at school or at home. Poor little TRex was a mess. So after I could drive again, we settled into a routine. I would drop TRex off at school and go to the hospital to be with DQ. And being dropped off at school felt good to TRex. It was normal and expected and his beloved M&D gave him extra hugs to help him through the days.

Leaving the Dancing Queen at day care at three months old was an entirely different story. After all, she had only been out of the hospital for a month. She was on a feeding tube. And she was still a very sick little girl, but she survived better than I did. M&D put her in a swing and she loved it. She enjoyed being around the kids and she loved the music. DQ took to it better even than TRex had.

It didn't get really hard with DQ until she returned to school following her second surgery. She was about 16 months old. She hit the separation anxiety phase right when she returned after having spent 3 non-stop months with me. She would cry so hard when I left that my entire being would ache. She would get over though once I was out of sight and that made it all right, but didn't help my ache. I wanted to be there for her. She did get over the separation anxiety phase and it got easier again to leave her. But every time she was hospitalized, upon her return, she would cry when I left for at least a couple of days. Leaving her at those times hurt, but I could do it because I knew giving her that freedom would allow her to grow and become independent.

But now, its different. Every day of summer vacation, when I drop DQ at her regular preschool/day care, she screams and holds me tight, refusing to let go. I don't think this is clinginess for mommy. It feels like she doesn't want to be left at that school. It's not the teachers. She loves them. I think the problem is that DQ has no friends. TRex tells us each night who he played with throughout the day. We ask DQ and she says nobody or tells us who wouldn't play with her.

Each morning when I drop the kids off at school, TRex runs off with a different kid (they greet him at the door) and none of the kids come running up to DQ. As I try to leave, I have to pry DQ from my body. One of the teachers usually has to grab her away. As I walk to my car, the tears bulge at my eyes and her cries reverberate in my ears.

I don't think my three year old is being played with at school. That breaks my heart. I know I've blogged about this before, but it is killing me lately. I don't know how to fix it. And I've been a kid before, so I know that I probably can't fix it. But I can't help thinking "life is not fair!" How could anyone not love that face!

Wednesday, July 13, 2011

Tuesday, July 12, 2011

On Looks

I have never been happy with the way that I look. I can look back at pictures of myself and realize that I was good looking at times in the past, but at that time, I felt unattractive. I've always felt fat. I am totally fat now, but in high school, I was healthy and muscled, and I felt fat. I wasn't.

I've never felt beautiful. Even on my wedding day, I didn't feel beautiful. I still don't see a beautiful bride when I look at my wedding pictures (which is why most of my purchased wedding pictures do not include full pictures of my face, only turning my head).

As I was growing up, I was told I was not beautiful. I could not be beautiful. I could only ever be cute. In fact, the Mad Scientist is the only person to ever call me beautiful. And I know he believes it. And in moments, I've gotten close to believing him, then the little voice returns chanting that I can never be beautiful.

I know beauty is in the eye of the beholder and beauty is only skin deep. I know that what is on the outside doesn't matter. But it never felt good to not be a beauty. It hurt to know nobody thought I was beautiful growing up (I didn't meet the Mad Scientist until I was in my late 20s).

So when my children were born and I saw how beautiful they were, I couldn't help but let them know it. I must tell TRex and DQ how beautiful they are to me at least once a day, if not more. I want them to know they are beautiful to me and that nothing can take that away.

But then, I read an article earlier this week about continuing disparities in the legal profession between men and women. Despite women representing more than 50% of law school graduates for a long time now, the percentage of women in management positions in firms is still minimal. The article went on to discuss how women are still mostly judged by looks, rather than skills.

I've read dozens of similar articles about professional women, about raising girls, or about how society starts when girls are young to define the girls' self-worth through looks, which is bad.

So, I started to think I was bad for telling my children I think they are beautiful. I cursed myself for ohhing and ahhing when DQ dresses up and I tell her she is pretty. I was angry for singling out TRex to let him know is handsome when he gets dressed. I wanted to thwart my subconscious for trying to keep my children from feeling the pain I had and constantly telling them how beautiful I think they are.

And then I realized that I don't only comment on my childrens' looks. I'm not raising children that will only be good enough if they are beauty queens or fashion models. I don't only give my children praise for dressing well or being pretty. I tell them I love them and hug them when they ride a bike, make a new picture, form a new sign in ASL, or sing a new song. I praise them for their accomplishments both physical, intellectual, and creative. (And I am not trying to raise entitled children, so I also scold them when they are naughty, make them work, and they are never allowed to say they can't and must use "I'll try".)

At the end of the day, society is going to make its own judgments about my kids. It is my job to help provide them the tools to succeed and thrive in this world no matter what is thrown at them. One of those tools is being comfortable in their own skin. Knowing that their mother thinks they are beautiful won't help them in 8th grade when they are picked on, but I hope it will provide them with protection so that they don't believe the mean things that will be said.

What do you think?

Monday, July 11, 2011

Rockin' the Baby

I had a totally serious post stirring in my head all day, then I got home and started scoping out all of the great baby pictures for Shell's Rockin' the Baby link-up. I couldn't help but post some more baby pictures of my sweet babies.
TRex only a couple of hours old.
TRex at about 3 weeks old.
TRex about 1 week under 2 months old. He was literally caught in his first snow storm in mid-October.
TRex 2 days under 2 months old, sleeping in the Mad Scientist's arms.
Dancing Queen a couple of hours old.
Dancing Queen around 3 weeks old.  She was 2 weeks post-op and still on a vent, but one of my favorite pictures of her at this age.
Dancing Queen at 2 months old. Her first day home from the hospital!
Dancing Queen around two months old.
I just love looking at my gorgeous babies! I have more photos of my babies as babies at my Baby Fever post. And you can see pictures of other gorgeous babies by checking out the link-up at Things I Can't Say.

Saturday, July 9, 2011

AUGHHHHHHHHHHHHHHHHHHHHHHH!

Okay, I'm better now that I let out that scream. The Dancing Queen has been "eating" the same two pieces of turkey sausage for 20 minutes. She shoved them both in her mouth when she misunderstood her dad's question as to whether she would eat candy. She said yes and shoved the sausage in her mouth because she knew there'd be a price. The Mad Scientist only meant to learn whether DQ had room for more food, but she is 3 and thought she was actually getting the candy. Since I too misunderstood the Mad Scientist, I got her candy. Yet, with the motivation of a chocolate kiss, she is not swallowing the sausage!  AUGH!!!!!!!!!!!

Getting DQ to eat is so frustrating! When it is all said and done, with those two very small pieces of sausage, DQ ate four bites of turkey sausage link (about 1/3 to 1/2 a link), two bites of a frosted strawberry pop tart (low fat even--another AUGH!!!!! why would you buy lowfat when you plan to give it to DQ!!!!), 4 ounces her crazy, ridiculous, expensive amnioacid only formula (aka milk), a swig of orange juice, and one chocolate kiss. We'll be lucky if she got to 200 calories on that meal. AUGH!!!!!!!

Yes, I know many kids are picky eaters and that breakfast doesn't sound too appetizing, but it doesn't really matter. DQ refuses to eat breakfast. Every. Single. Day! Usually, she requests chicken baby food for breakfast. She prefers the number 2s (small jars) and eats about 1/3 to 1/2 a jar (maybe 40 calories), then some yogurt covered raisins, and 6 ounces of milk. In total, about 230 calories. She is supposed to be getting about 1500 calories a day! And if she had her choice, she wouldn't drink milk, she'd drink water!!!!!!! The milk provides the most calories and nutrients for her and water has none o that! AUGH!!!!!!!!!!!!!

DQ eats slightly better for lunch as long as she is not tired. If she is tired, she won't eat a thing. Dinner, she usually does fairly well, but still nothing compared to TRex at her age or even TRex at her size. At 3 years old, DQ is the same size TRex was at 18 months old.

HOW DO WE GET HER TO EAT?

DQ loves food, especially burritos, chili, and spaghetti. She plays chef all of the time. She tries everything. She just won't eat. She did food school with the feeding therapists. We did the exercises at home with her. She improved leaps and bounds, but still, IT IS NOT ENOUGH!

DQ saw her GI doc yesterday and on their scale (the one I trust the most) she still weighs about 25 pounds. The Dancing Queen is almost 40 months old and she weighs almost 25 pounds. *Heavy, heavy sigh*

Her GI doc is the very best and DQ has improved since her last visit because she is not vomiting. We even made it through a dinner at Big Boy last weekend without DQ vomiting on the table. Huge victory for us! And since DQ has been complaining of chest pain at breakfast every morning, he decided to switch up her meds to see if we can get some improvement.

I desperately hope the med change will work. DQ needs to eat because she needs to grow. Growing is the only chance she has at survival. I'm not too concerned about her being small stature. I want her pulmonary arteries to grow. I understand that the pulmonary arteries stop growing around age 6 or so (maybe I'm wrong and it is older, I couldn't find this "fact" online in a quick search). If 6 is the magic age, we're over halfway there and DQ's pulmonary arteries are too small for her current size, let alone a teenager or an adult size. She needs to eat to grow those arteries. There are no interventions, no medicines, no surgeries to be done to help those grow. If they stay small, as the rest of her grows and her blood increases, her pulmonary hypertension will get worse. Her heart can't take much more strain. It already works harder than most hearts. It beats like she is exercising in her sleep.

Does anyone have any suggestions to get DQ to eat more?

Tuesday, July 5, 2011

Breaking Down Preconceptions

Before I start my post, let's be clear about one thing: I did everything that I was supposed to do. I consulted a doctor before I started to attempt to conceive. I was on pre-natal vitamins before. I stopped drinking alcohol, cut out caffeine, no tuna, no soft cheeses, no lunch meat all before conceiving. I never smoked nor took drugs nor medications not okayed by my doctors. I even left the room if someone lit up. I started all of this before conceiving. My primary care doctor told me if I was planning to have a baby, I should start acting like I was pregnant for the two months preceding our first attempts. So that is what I did. Yet, my daughter was born with multiple, complex congenital heart defects.

As we've discussed before, I sometimes feel responsible for the Dancing Queen's conditions. It is highly likely that her myriad of problems stems from her micro-deletion of chromosome 22q11.2. (There is an extraordinarily high correlation between conal truncal heart defects like DQ's and the deletion, but there has been no direct connection showing definitively that the 22q deletion causes heart defects.)  But, most CHDers don't know why they have defects.

That bears repeating: There is no explanation (yet) as to why most CHDs occur!

And so when I learned recently that a college entrance exam study aid stated that most CHDs are caused by the mothers drinking or using drugs, I got very upset. A CHDer noticed this egregious error, wrote the publisher, and the error will be corrected. But the problem is bigger: like the origin of the misunderstanding.

Generally, people believe that only mothers who do something wrong will have children with defects. Afterall, that is why I blamed myself for so long. And that is why so many heart moms feel guilty at least for a while. This societal belief that only "bad" moms have sick babies is why CHD awareness is hindered. Until CHD is personal, nobody believes it is possible.

The head in the sand mentality has to change. CHD does not discriminate based on race, on income level, on nationality. Yes, there are things you can do that will increase the odds of your baby developing a CHD. But, even if you do everything right, there is still a 1 out of 100 chance your baby will be born with a broken heart.

What's worse is that routine screening is not yet done for CHDs in the majority of states and many children go undiagnosed until it is too late. And despite the prevalence of CHD, parents are not taught the warning signs before bringing their newborn home. This has to change.

You may wonder why I care. Afterall, my daughter was diagnosed and she is receiving care. But I feel that all babies are important. Not one should be lost because much of the medical community is living 50 years in the past where children simply died from their CHDs and it didn't matter if the CHD was detected. Today, the sooner the CHD is detected, the much greater chance of survival. There is no reason why a child with a hole in their heart should go undetected into their teen years when it is too late to fix the hole and they are suffering from other uncurable, life-threatening diseases caused by the hole. No more children should be lost because nobody looked to see if there could be a problem.

I hope you will join me in helping to change this egregious oversight. First, if you are pregnant (or know someone who is), request that the newborn have a pulse ox done before leaving the hospital. The doctors aren't necessarily going to hear any heart problem and ultrasounds can even miss that your baby only has half a heart. The pulse ox does not detect CHDs, but it is an inexpensive, non-invasive tool that should warn doctors a problem may be present and more tests need to be done (it determines the percentage of oxygen in the baby's blood and should be over 97%). A pulse ox doesn't hurt and is found in every hospital. For a baby, it looks like a bandaid, but not quite as sticky.

Second, learn the warning signs. If your baby is blue at all, demand a pulse ox. I've heard stories of nurses telling new moms that some newborns just turn blue and it is common. Your baby should not be blue! If they are blue, they are not getting enough oxygen and could have a CHD. By blue, I mean even if their lips, fingers, or toes are not pink, but purplish in shade. DQ's hands, feet, and lips were very blue when she was born and she still gets that way sometimes (like today). If your baby tires very easily while eating or sweats while eating, that could be a sign of a CHD. Rapid breathing is also a sign of CHD.

Third, write Health and Human Services Secretary Sebilius and tell her you want pulse ox mandated for all newborns. She is considering rules that would implement a pulse ox for every newborn in the country, yet doesn't believe we care enough to save babies' lives. I care! If you care too, here is a link to a letter you can customize and email to Secretary Sebilius: http://www.writesomeone.org/en/component/mtree/recommend-newborn-screening-for-critical-chd.

Finally, pass this information along. The best way to prevent the loss of these children is to educate their parents. Parents are the frontline defense for their kids. When you pass this information on, if the mother or father shuts down and doesn't want to think about it, ask them one question: What is the life of your child worth? We're trying to save lives.

Saturday, July 2, 2011

Celebration Time!

Last night, my lucky kids had several firsts. They both went to their first carnival. They both went to their first concert. They both saw fireworks for the first time.

The night began with us meeting the Editor, Car Guy, Little Car Guy, the Chef, Ma, and Papa in the parking lot of Ma and Papa's church (actually the Dancing Queen and TRex came with them and the Mad Scientist and I arrived separately since I had to work later than planned). The ten of us then joined the throngs of people heading to the river front. The walk was filled with interesting people to see, lots of offers to purchase glow necklaces, and of course passing the carnival midway. TRex wasn't impressed. He found the walk boring. I enjoyed it though and DQ was pushed the entire way by the Chef, so she had fun.

After a difficult search for the tarp Ma laid out early in the morning, we settled into the side of a hill right by the river. The hill had about a 30 degree incline, so sitting was not easy. We arrived right when the band started to play. DQ thought it was awesome.
video
The boys looked a little bored with the music though, so the Mad Scientist and the Car Guy took them to the midway for some fun. DQ was jealous and wanted to go to, so Ma decided to take her with the boys.  The midway was full of all your street carnival games and rides. Lots of people to see and things to do. Neither of our kids had seen such frivolity before and it was very exciting.

DQ only lasted about 5 minutes though before she wanted her mommy. Ma brought her back to the blanket and immediately DQ asked to go to sleep. (It was 45 minutes past bed time, the temp was high 80s, very humid, and she hadn't really eaten, so she was plain tuckered out.)  We made her a nice little spot on the side of the hill, took her glasses off (did I mention DQ got glasses?), and gave her a pacifier.
DQ in her glasses with her pacifier last night.
DQ was ready to sleep, but the music was playing. And wouldn't you know it? That Dancing Queen couldn't help herself. She was laying on her back on the hill, covered in a blanket, sucking a paci, and dancing. She had her arms swinging and body swaying as she laid down. But when you dance while laying down on a 30 degree angle, on top of tarp, you slide right down the hill. So, every couple of minutes, we had to pull DQ back up again. That upset her, so she decided to cease sleeping and go with the fun. She spent the rest of the "concert" dancing.

(I say "concert" because the band wasn't that good and despite being on the opposite side of the river, the base was up so high that it vibrated everything and made it uncomfortable to listen and for the Editor, hard to breathe.  There was a point between songs that an entire flock of geese swam up the river in triangle formation, all Canadian geese gray and black, led by one white goose at the tip of the triangle.  They got up to the band stand right when the band started to play again. The geese immediately turned around and quickly headed back where they came from. The band definitely deserved the snub.)

DQ didn't care about the quality of the band. She heard a beat and music, so she danced and loved every minute of it. Each time a song ended, she'd clap. (Many times, she was the only one.) We had everyone around us watching her. It was so much fun. She spent a good 20 minutes alone dancing with the Editor and having a blast. Here she is dancing with her Ma.
video
The boys came back right as the band stopped playing. TRex went on a tilt-a-whirl and bumper cars. He had a blast. This is a huge deal for him because we couldn't even get him to ride the toddler train when he visited Santa. He was too scared. So the idea that he actually got on the tilt-a-whirl is huge. He loved it! Maybe next time it will be easier for him to move past his fears.

As twilight gave way to darkness, DQ grew anxious. She wanted to see the colors in the sky.  And finally, the fireworks started. DQ was enthralled. She was laying in her aunt's lap, looking directly at the sky while the fireworks were directly above us.  (We literally had the best seats available.) I don't think DQ closed her eyes once for the entire twenty minutes. Simply put, she was in awe. (This morning, she inundated us with questions about when she was going to see the fireworks again.) DQ's reaction was magical for me. And, I have to admit, last night's display was probably the best I'd ever seen in person.

Unfortunately, TRex did not have the same reaction. At the first boom, he screamed and cried. He wanted his puppy dog. Mommy and Daddy were not adequate.  Puppy dog was the only one he wanted. I thought we were going to have to leave early, but then inspiration hit and I promised TRex we'd go straight to the car as soon as the fireworks ended to get puppy dog. He stopped screaming and crying at that point, but he is adamant that he will never see fireworks again.

The night ended with the long walk back to the car in the crowds. A fight broke out right next to us and scared the heck out of the Editor and I, afraid for our babies. And the car ride home was an entire story onto itself. Let me just say that the entire world seemed to be leaving down the one road we were heading to, but nobody moved an inch for 15 minutes, then an ambulance came. And then another. And then another. We were eventually able to turn around. But it took us an hour to go a mile. I held my phone up so the melting down kids (awake 4 hours after bedtime) could watch "The Cat in the Hat" and we didn't get home until after midnight.

Overall, the day was a total success. My kids had a blast. I can't wait to do it again and can only hope TRex's fear subsides with time.

Did any of you see fireworks this weekend?
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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