Thursday, March 22, 2012

Nine Years

Nine years ago today, I went on my first date with the Mad Scientist. I wasn't expecting much from the night. In fact, I had sworn off men for good the night before. I only kept my date with the Mad Scientist because he was so nice and I hoped we would be good friends.  Little did I know . . .

Nine and a half years ago, after taking the New York bar exam (and passing), I got homesick. I found a job and moved back to Michigan. The only problem was that all of my friends were married or engaged. None of them were single and none of them wanted to go out for a girls' night, so I didn't really go out in situations where I could meet guys. (I usually went out with a guy friend and that didn't work well for talking to other guys.)

So, I joined a dating agency. I went on a lot of dates because I was one of the only younger women. But the men! Oh my goodness!!!!

I had one guy who was shorter than me (I'm 5 foot tall!) That same guy refused to even pay the $1.00 for us to ice skate at the public park because he wanted to save all of his money to retire at age 40 and have fun for the rest of his life. It is a good idea, but he DID expect that I would pay for everything. (I had no problem paying, but he especially said he wanted me to pay so that he didn't waste his retirement money!)

There was the really good looking carpenter who couldn't handle the fact that I was a lawyer.

There was the engineer who thought he was doing me a favor by going out with me even though he was NOT good looking, boring, and had an ego larger than the state (all turn offs for me.)

The night before I went out with the Mad Scientist, I went out with a guy who told me he was looking for a woman to marry and take care of him, just like his momma.  He told me I wouldn't be able to continue working when we married!

That was the straw that broke the camel's back. I swore off men for a long time.

But, I had met the Mad Scientist online in early February. We had emailed extensively. We shared a lot of the same views on life. We talked on the phone and enjoyed that a lot. He was great. Too great I thought. So, I went on the date, hoping for a good friendship.

We met at a bar and grill neither of us had been to. It ended up being dark and dingy, so we hopped in our cars, trying to find someplace else. Neither of us have a sense of direction, so we drove around a bit, but ended up at a great bar and grill. We ate lunch and talked and talked. We walked down to get coffee. I tried to get him to hold my hand. He didn't grab the bait!

We then went back to check the meters on the cars and the Mad Scientist had a parking ticket. So, we went back to my place and played chess and talked some more. We had deep discussions--everything from capital punishment and abortion to atheism and religion. He never tried to hold my hand or kiss me though, so I was resigned to him being the friend I had thought he'd be at the beginning.

After a 6+ hour date, the Mad Scientist went to leave. It was then that he finally kissed me!

I knew at that point that I was in love with this man.

And the rest is history.

Monday, March 19, 2012

Can you hear it?

I creep in there each night. I check to be sure they are the proper temperature--that their blankets are where they should be. I find a spare pacifier and put it on DQ's pillow so that I don't have to wake at 2:00 am when she can't find one. I place gentle kisses on each of their foreheads and whisper "I love you" in their ears. I try very hard not to pick them up and hug them tight, so I don't wake them.

Then I listen. I stand in the middle of the room and  listen.

Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum.

There it is: the gentle sway of the Dancing Queen's heart beating its own little groove.

I can hear it now in my head as I type this.

Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum.

It's like a dance tune. 110 beats per minute, measured out in perfect rhythm.

And it's always the same . . . until it isn't.

The Dancing Queen's birthday was a complete success. She had the time of her life. But, at the end of the day, her poor little heart and lungs couldn't keep up.

The rhythm is faster now; the breathing harder, making it more difficult to hear.

I guess I should be happy that I can hear the tune at all. And most days I am. But, today, I'm just scared.

Sunday, March 18, 2012

Butterfly Birthday

The Dancing Queen's Butterfly Birthday Party was a success!
The birthday girl was rightfully excited--as any four year old girl would be. And Ma's house was completely covered in butterflies.
And the balloons. DQ loved the balloons.
Of course, we had the special cake from the charity Icing Smiles. A wonderful volunteer gave DQ this wonderful cake.
  And before the party, we got a picture of DQ with the cake.
 She loved it so much!
I think one of DQ's favorite things was the gummy butterflies though.
We all we rocking butterfly wings as well.
 The weather was gorgeous. So we were outside a lot. It was so fun to be able to open DQ's presents outside. That is what we normally do for TRex in August, not DQ in March.
Before the meltdown hit, we ate cake!
It was yummy!

Friday, March 16, 2012

Four Years Old

I have been busy over the last couple of weeks, prepping for the butterfly birthday party for my sweet girl. I've cut paper. I've punched paper. I've hung butterflies on strings.

I've rolled, cut, baked, and frosted a ton of butterfly cookies for DQ's two schools.

I've ordered wings, bubbles, and toy favors. I've searched for and carefully purchased purple and pink butterfly decorations, balloons, gummy candy, M&Ms, and table settings.

I've been making lists of food to make later today: butterfly pasta (bow tie), spaghetti sauce, Italian sausage (turkey of course), salad, some sort of punch.

I've been very busy trying to make the best butterfly birthday party ever for my sweet girl. I called Icing Smiles and requested a special cake. I've invited friends and family. I've planned butterfly games. 

What I haven't let myself do, until today, was think about what an amazing event it is for the Dancing Queen to turn four. 

She is going to be four tomorrow. My sweet girl has made it to four years old. I am so incredibly happy, lucky, excited. I am beyond grateful to have had so much wonderful time with her (even when she screamed and grumped at me this morning because I told her she wasn't allowed to turn 5 tomorrow, only 4).

In December 2009, we were told she would have two years with us at most. We were told not to expect her to make it to her 4th birthday. 

That was so wrong. And I am so grateful. I've had time with my daughter; time that I don't ever want to take for granted; time that many others do not get with their children.

My daughter is turning four tomorrow. She goes to two schools. She plays. She has fun. She loves life. She dances and sings, showing her joy to the world. She lights up the room where ever she may be. She has shown me the wonder that is life and how to truly enjoy it.

Happy Birthday, sweet girl! May all your dreams come true. 

Wednesday, March 14, 2012

Dressing Herself #iPPP

This was taken yesterday. My sweet girl in her last week as a 3 year old. I just love the outfit she picked out for herself.
Here is the same pic, showing both of my sweet babies.

This post was brought to you as part of #iPPP (iPhone Photo Phun). I don't have an iPhone, but love my Thunderbolt on the Android System. Anywho, most of my pics are on my phone, so I thought it fitting I finally take part.

Tuesday, March 13, 2012


My initial blood test for celiac came back negative. I'm not really surprised. I've had symptoms since I was in high school and been tested previously and they've come back negative (even biopsies). I'm waiting to hear back from my primary care physician to see what she wants me to do next--different blood test, biopsy,  or simply go gluten-free. (I understand that some of the tests are not accurate when a person has a weak immune system, which I have. I'm not sure if my doctor took that into consideration when she ordered the test.)

I so wanted a definitive diagnosis. I know if I go gluten-free and feel better, that is pretty good proof. But I also know that if I go gluten-free and feel better, I will never have an official diagnosis because you have to eat gluten for any test to "work".

I mentioned to a friend that I was certain I have celiac and would be going gluten-free once the testing was complete (no matter the outcome). Her response was exactly why I want a diagnosis. She told me "It's bad to go gluten-free if you don't have a diagnosis." I don't know the truth of that statement, but it is exactly what I will face for the rest of my life--from friends, family, colleagues, insurance companies. If you don't have a diagnosis, it must be in your head. And in the my head, I will wonder, even if the pain I've lived with for years finally goes away.

I know I shouldn't let other people's thoughts bother me, but I know it will cause headaches if I don't have a real diagnosis. I just want something to be easy for once (not that having to go gluten-free would be easy, but it'd be easier with a diagnosis). What's even more frustrating is that I've been living with pain for so long that people don't believe me any more. Like because I learned that I couldn't just lay in bed all of the time (like I did when I was first trying to get diagnosed), it must not be real. Yet, I have had problems for years that I've pushed aside and now that I want to put my health front and center, I have people believing I'm loony.

I stopped hoping for a diagnosis and "cure" to my pain many, many years ago. But, for some reason, I let myself hope I'd have an answer this time. I am ready to do what's necessary. But now, I don't know what it means.

Wednesday, March 7, 2012


The Dancing Queen got sick again on Monday. Since the Mad Scientist had to take her to the doctor before TRex got out of school, but wouldn't get home before latchkey closed, I got to pick him up. (Normally, I only do drop off.) It is very different for me to see TRex at the end of day, rather than the beginning. In the morning, he doesn't want to leave me. He clings so tight and tells me several times "I love you, Mommy", then runs off reluctantly trying to find something to occupy the 20 or so minutes before class starts.  In the afternoon, he is excited to see me, but he has been playing, having fun. There is no clinginess. It makes me so happy to know that he can fit in and play with the other kids.

On Monday, as as I was signing TRex out of latchkey, a little boy walked by. TRex ran to him and gave him the biggest hug before we left. The little boy hugged TRex right back. And it made me smile so much because it reminded me of my toddler TRex and my preschooler TRex who always hugged his friends goodbye. I didn't realize he still did it. It made my heart swell to know the other little boy reciprocated (I learned the other little boy was "L", TRex's best friend).

The next day, DQ stayed home from school with pink eye. She was very sad about it, so TRex vowed to make her a love card when he was at school. And he did. He made his sister a love card.

He drew Papa, Ma (with her crazy hair), DQ (with her special heart), TRex, Daddy, and Mommy to show his love.

This is the kind of boy I want to raise: a boy who loves his family and loves his friends. A boy not afraid to show the world his feelings.

Yet, I have to wonder how much longer will TRex be so innocent? How will that innocence be lost? Will some older child make fun of him for hugging his friends and make him ashamed of hugs? Will a friend push him away and call him something awful? While I teach my children to hold onto their love and not to be ashamed of who they are and who they love, I can only prepare TRex so much. And no matter what I say or how often he hugs his family, at some point, it will no longer be "cool" to hug your friends; it will no longer to be "cool" to love your family openly.  I just hope we've built a strong enough foundation for him so that it won't hurt too bad when he "learns" hugs aren't cool or macho. And that he will always remember I love him, even if he is too cool to tell me he loves me. I hope he remembers all of the times I told him I will love him no matter what he does or how he acts and that I know he loves me no matter what he says or does.

I guess that is all I can do.

Well, that, and make sure I get plenty of hugs and love now to tide me over for the time period when he is too cool for mom.

Sunday, March 4, 2012

Best Day Ever!

It's funny how life gives you just what you need, right when you need it. Obviously, Friday was not a good day for me. But, in the words of the Dancing Queen, Saturday was the best day ever!

A couple of weeks ago, when DQ was sick and not going any where, TRex and the Mad Scientist went to the movies. DQ was sad, but we can't keep TRex boxed up in the house whenever she is stuck here. It is too hard for all of us and he goes stir crazy. To calm the Dancing Queen down, I told her we'd go see "The Lorax" when it came out--just the two of us. She didn't know there was a new movie, but she was so excited because she loves, loves, loves "The Lorax", both the old movies and book. And she hasn't been to the theater since last summer, when we vowed she was too young and had to wait. And she has never done something like the movies or any outing without her brother!

I didn't know that DQ had held on to that promise. I fully intended to keep it, but at my leisure. So, Friday night, after I was sad and spent, I got a phone call from the Mad Scientist. DQ was saying something about seeing "The Lorax" with mommy and nobody else go to go. She had learned the movie came out that day and sure we were going on Saturday.

I couldn't let my sweet girl down, so Saturday morning, we prepped to go. She wanted to see the movie in 3D, but there were no tickets left that fit her nap schedule, so she settled for the 10:15 showing of the "regular" movie. The kids were jumping round the living room, jubilant with the day (TRex was returning to swimming class that he had missed since early December since we missed the sign up for the last session somehow). The Mad Scientist and I decided we'd meet up after at our favorite Mexican restaurant. It was at that point that DQ squealed with delight "This is the best day ever! I don't even have a smile big enough I'm so happy! I get to go to the movies. Then Azteca. And I get to be with my mommy!" Talk about heart melting moments. **Sigh**

DQ and I did go to the movie and she had a wonderful time. She sat so well through the whole thing. I reveled in watching her little face get so excited. And hearing her exclaim: "He's the one who cuts down the trees!" and ask me "Why is that the last tree, mommy?"

Lunch with the family was wonderful. TRex got his usual bean burrito. DQ ordered a bean enchilada, but preferred the tamale I ordered and the Mad Scientist's shrimp chimichangas. The perfect morning!

Today, we continue with the fun. First, the kids and the MS built a park in the living room.
It makes me smile from ear to ear to listen to their squeals as they have fun together. Eventually, the park turned into a forest. And DQ was the Lorax. She spoke for the trees.
This afternoon, I plan to do something actual work, but we're also busy getting things ready for a very special butterfly birthday party that is coming so soon.
 Life is good.

Friday, March 2, 2012


TRex asked me the other day if people could explode. I told him people could explode under the right circumstances, such as swallowing dynamite, but that he didn't need to worry about it. He accepted that answer and went on about his day.  I forgot about that interlude until I sat down at my desk today, thinking of the week that has just transpired. I couldn't hold it back any more and I wept, big fat air-gulping sobs. I had exploded.

I can't believe how much life has changed in the last week.

First, we had the Dancing Queen's annual IEP meeting. I don't know if you've ever made an IEP for your child or even know what it means, but it is emotionally draining and extraordinarily hard to think about accommodations that may be needed for the next year for your child.  You have to think about what will she need if she has another open heart surgery as you've been warned is possible. You have to think what happens if they can't operate. You are forced to think of the hardest things. And despite loads of preparation, I still crumbled into a ball during the meeting and cried.

After the IEP meeting, we got a message that TRex was upset at school. We called and he wanted to know why Rookie had to die. Then of course, the Mad Scientist and I had to put Rookie to sleep.

That was Friday.

Friday night, the Dancing Queen was up most of the night coughing and gagging. She started vomiting on Saturday. By Sunday, she couldn't keep anything down and refused to eat or drink.  On Monday, she ended up in the ER because of dehydration caused by a simple cold.

Tuesday, DQ was home, but still not eating or drinking and we debated about taking her back to the hospital as she just slept. TRex, upset by it all, took his fears out on a classmate and his teacher.

Wednesday, DQ still wasn't really eating or drinking much and wasn't peeing at all, yet she woke up with a swollen face, showing that her heart was not working properly.

Thursday, I got her to eat and drink a little. She went to the doctor and we learned she had lost half a pound due to her illness. When you only weigh 26 pounds to begin with, half a pound is huge!

Thursday, she peed once for the entire day. Just once.

Through it all, I was keenly afraid that I could lose her to a heart attack from dehydration.

DQ went back to school today, but only after she was up all night coughing and crying out in her sleep.

To top it off, with DQ sick, me working a ton, and the Mad Scientist sick, we have lost control over our house. It is so overwhelming. I need a week to throw everything away just to be able to breath in there, but I don't have a week. And we need to sell our house or rent it or get rid of it some way. I don't have the time to clean, let alone to talk to realtors and mortgage brokers.

Then throw in the "little" big things that are piling up. I have to find someone to watch TRex this summer when school is out. I don't even know where to begin. DQ needs to have her periodic abdominal ultrasound to check for kidney cancer. I haven't had the chance to look for the script, let alone find a morning to take her.

I have been so worried about DQ's noticeable cardiac symptoms as well. She was supposed to see her cardiologist this week, but couldn't because she was sick. So, once again, we wait and worry. 
Of course, it was this week that I really thought about how bad I have been feeling for so long and how much worse I am getting.  I feel ill every day of my life. A change needs to be made. I know what that change is, but I need help to make it because the change is so hard. I don't have will power. Yet, I have no help, and am faced with daunting temptation everywhere I turn. It is too much to do alone, but I have no one to help me. And since I can't do it alone, it won't happen. It will only get worse.

I am so overwhelmed. And sick. And slow.

It is no wonder I exploded.
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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