Sunday, January 29, 2012

Where Everybody Knows Your Name

Our family has been breakfasting at the same restaurant since before we were a family. The Mad Scientist and I happened upon the little place back when we were dating. Before he ate breakfast food. Before we were engaged. Long before kids.

We don't go there every weekend, but we are regulars. And the place is small and family owned, so the staff is pretty much the same as it was 8.5 years ago when we first started going there (although the location is different).  Everybody knows our names and has watched our family grow from the month before our wedding when I had to sit outside while the Mad Scientist grabbed our food to go because I had shingles (stress from wedding planning amidst the deposition schedule from hell) to this morning, as the Dancing Queen munched on breakfast enchilada and TRex ate his regular pancakes and scrambled eggs, followed by chocolate covered strawberries of course.
February 2010, TRex enjoying a strawberry.
Summer 2011, DQ enjoying a strawberry.
They watched as my belly grew with a baby TRex until he was a toddler and I had baby DQ on board. They worried with us as they saw TRex come in with only one of the Mad Scientist or I for months and no little baby by our side. They met DQ with a feeding tube in her nose and have witnessed her medicine routine (which is always given after breakfast so that she will eat more).  And they know us so well that when TRex and I show up on a morning, they immediately ask how DQ is since they know she is in the hospital and we're trying to give TRex a special treat. We stopped there on the way home from the airport after flying to California. They asked whether the doctor could help.
Summer 2009
Summer 2009

You get the picture. They know us.

This morning, however, I was taken aback.

This morning, as the Mad Scientist took TRex and DQ to the bathroom to wash the chocolate from their fingers, one of the waitresses caught me off guard. We were discussing the amount of enchilada DQ left behind and how well she is doing eating. The waitress asked how old DQ is now and I said she will be 4 in March. She then asked about TRex and I said he is 5.  She wanted to know how far apart the kids were and I said "17 months." She responded with a "wow".  Before I knew it, I said "Yeah, if I had known she was going to be so sick, I wouldn't have had the kids so close together."  She responded, "But DQ doesn't look sick. She always tells me stories and makes us smile." And at that moment, DQ came bounding back from the restroom, exerting more energy than she had stored, but making herself appear the picture of health.

I didn't have time to explain to the waitress that it doesn't matter what she looks like on the outside, DQ is sick. Just because you can't see it, doesn't mean she is fine. I really wanted to say these things, but the moment was lost. And hours later, I'm dwelling on it.

I don't really know why I'm letting it bother me. These people don't read the carepage. They don't know a lot. They see us. They've seen DQ much sicker. But, this one particular waitress has sat down with me for a good long time, asking questions about DQ and her surgeries and life.

I'm used to most people discounting what we go through, thinking everything is fine because DQ is not in a hospital bed and nobody sees all of her scars. But when I take the time to try to explain her condition and still, it is not understood, that is hard. I try to raise awareness all of the time so that more people will understand a little of what we go through, of what all heart families go through. I feel in my bones that if more people understood, they would want to do something and research dollars could be raised. I know the only way the Dancing Queen has a chance at a longer life is if breakthroughs are made today in research. Yet, if I can't get across the severity of what we live when I sit down with a person who was genuinely interested one-on-one, how can I expect to make a difference with anything that I do?

And therein lies my quandary.  I'm not going to stop trying to raise awareness. It is almost February afterall. But it does make me wonder how we can get the message across better?

Saturday, January 28, 2012

Weekly Wrap Up

This week has been a lot of the same. I have been working crazy hours and am so exhausted that even though I am in the midst of working on a brief right now, I have to stop and blog to get my mind focused again. (It might not make sense to you that I stop writing to write so I can focus on writing again, but it works for me!)

Weekly Hizentra infusion.
The week started out bad. DQ has had a cold and sinus infection for well over a week and woke us all up for at least an hour 4 out of 7 nights.  She finished her antibiotics on Thursday and by Friday afternoon, her ear drum exploded again.  So, we had 30 days of no infections following the start of Hizentra (immunoglobulin therapy) and she is still going to need multiple courses of antibiotics to kill the bugs. I'm so not happy about this. Grrr!

And to top it off, we learned that DQ won't tell us her ear hurts!  Seriously, her ear had exploded maybe an hour before, so I ask how her ear is doing. DQ's response: "My ear is good, Mommy." Really? How is that possible. You screamed in pain when I accidentally touched it a little while ago.  "Mommy, this ear is fine (pointing to the right ear). My other ear hurts."  Well, what ear did you think I was talking about!!!!!

DQ adores her big brother!
We did have some down right cute moments as well.  Thursday morning, when DQ and I dropped TRex off at latchkey, TRex's teacher was walking by.  She said good morning to DQ.  DQ hid behind me, poking her head out and smiling at TRex's teacher.  So the teacher (whom I think is the best) told DQ that DQ is the talk of the kindergarten class.  (In the past, I've had little girls from TRex's class run up to us and say "Hi, DQ!" They fawn over her. I think its cause she is so little. Like a live doll, really.)

I asked TRex why DQ is the talk of the kindergarten class.  His response was that he always says how he loves his sister so much.  How sweet is that!

(Much sweeter than Monday morning when TRex knocked me on my tucus in front of his school as he yelled and screamed at me because he didn't want to walk into school.)

I also started working with Icing Smiles on DQ's upcoming butterfly birthday cake. DQ and I have been working on her birthday party. She is so excited for butterflies (her favorite).  It is going to be bright pink (but not hot pink) and light purple.  DQ and I were looking at the Pinterest board I created for ideas for the party (have I mentioned that I love Pinterest).  Anywho, little girl decided I didn't have enough butterflies pinned, so as she went off to play with her brother, she instructed me to find more butterflies. When she returned and I hadn't pinned more butterflies she said I wasn't listening to her and I had to go to my room.  (Do you think she's heard that before!)  Little stinker, but cute nonetheless.  I'm so excited to start making this butterfly party a reality.  You should check our butterfly board.

 The video that started DQ's butterfly obsession! Playing it when DQ ordered me to my room, got me out of time out.

Finally, I have spent my spare time (whatever that means) making preparations for Congenital Heart Defect Awareness Week.  It will be upon us before you know it.  I'm looking forward to seeing all of the work people have done.  If you want join in helping raise awareness of CHDs, one of the easiest ways to do so, is to follow the Faces of CHD Awareness Board on Pinterest and share the pins.
Fabulous cake the Editor made for DQ's mended heart party. It makes a great symbol for CHD Awareness Week.

Wednesday, January 25, 2012

Not a Tiger Mom

I am not a tiger mom. In fact, I sometimes think I an the opposite of a tiger mom.

Don't get me wrong. I want my children to succeed. I want them exposed to important learning experiences.

But, I don't force them to take lessons (except for TRex's swimming class, but that is to help him learn to swim cause he loves water and I don't want him to drown and we are hoping it will help him get over some of his fears). 

I don't sit in front of my kids with flashcards and I didn't make them learn to read as babies.

Frankly, I get annoyed that after seven hours in school each day my 5 year old has half hour of homework every night.  He's in kindergarten!

I think kids should be allowed to be kids. And I think school is important. I think homework is important. I think fostering the attitude that schoolwork is important is important (this is why I do not let TRex know I'm annoyed by his homework!)

I know there are other kids out there who are being groomed to excel in every way possible to be the uber kid so that by the time my kids are in junior high, the uber kids will make the team and beat my kids at everything. I know these uber kids will have better chances at ivy league schools and a more stable future. I saw their parents at an open house when kindergarten began. The desperation in their faces was palpable as they asked about starting a Mandarin club so the kids could learn more than Spanish. I know my kids will have tough competition.

Yet, I can't be a tiger mom.

I want childhood be to full of wonder and adventure. I want my kids' imaginations to bloom and grow. I want them to know the joy of a lazy day. Inspiration is born of a mind left to wander and experience. I don't see how regiment and 100% discipline allows the spirit to grow.

So, yes, I'm not a tiger mom.

Saturday, January 14, 2012

I Wish!

I hate being an atheist. I hate it. I hate it. I hate it.

I wish I could believe in God, in heaven, in the hereafter. But no amount of wishing will make me believe something that I do not believe.

Tonight, as I was tucking TRex into bed, he asked about death. He asked what happens. He asked where do you go. He asked about the cemetery and whether everyone goes to the cemetery. The Mad Scientist and I explained that not everyone does. He asked what we will do. The Mad Scientist explained that we plan to give our organs, tissues, and whatever else they need to save another person's life, then cremate the rest.

First, he wanted to know what happened to the ashes. I explained the choices availble and told him about my grandpa's ashes in the memorial garden. "But what if you die mommy, where we will bring flowers?" I had to explain that he could buy my favorite roses and have them on his table to remember me by. 

Then he wanted to know why people would donate organs. We of course explained that it was the greatest gift you could give and how tissue donors saved the Dancing Queen's life. On his own, TRex came up with "the gift of living". 

Next, TRex wanted to know if it would hurt when they cut you up to get the organs. When I explained that you are no longer there after you die, he asked in a shakey, scared voice "And the doctors do nothing?" I had to say "if you are dead, there is nothing that can be done." 

I watched him very closely up until that point. I saw the connections being made. I tried to change the subject to something positive, but it was no use. He needed to go there. "What do you mean, mommy?" I told him that when someone dies, you can't hug them any more, you can't kiss them, you will never be able to talk to them again. "Mommy, that is very sad. Do some people cry when someone dies?"

Of course I responded that most people cry when someone they love dies.

"But what if you die tomorrow, Mommy?"

I was sobbing silent tears. "You will be sad and it will be hard, but you'll go on with your life, make new memories, and be happy. You will always know that I love you forever and ever and always. And know that we live each day to the fullest, loving each other and getting lots of hugs now."

"I wish life didn't have to be that way, Mommy."

"I know, baby. I know. But this is how life is. Everyone is born and everyone dies."

"But I wish it didn't have to be that way."

"Mommy, why are you crying?"

The Mad Scientist stepped in, kissed TRex, hugged him close, reassured him of the wonders of life and how we expect to be around for a very long time. I composed myself.  Then I kissed TRex good night again, closed the door to his room, and broke down completely.  I have never seen that sweet little 5 year old boy so scared in my life.

I wanted to tell him when you die, you go to heaven. I wanted him to know that there was more, that he'd see us again. I wanted to give him anything that I could to help him be less scared. But I don't believe that. I can't. I've tried. It would so much easier if I believed. I wouldn't have to expose my children to the pain that is this life without the ultimate silver lining.

I guess in the end though, if we make each day count, like we try to do, we don't need the silver lining at the end. We'll make sure we find the silver lining in each day.

Saturday, January 7, 2012

The Cost of a Wish

It has been almost an entire month since I've blogged here. A month. I'd like to say that is because I have been way too busy to blog and when I get a couple of minutes to myself, I play Angry Birds. While that is all very true, it's not why I'm not blogging. (I've already beaten all the Angry Birds levels and have been cleaning it up to get 3 stars on every level.)

I haven't been blogging because I don't have a lot of positive to say and I hate that this blog has become so negative. Unfortunately, my lack of blogging has also made me feel without a way to get "it" out. So, today I blog. I blog for me.

Since we last met, a lot of things have happened. I was named one of the 20 up and coming attorneys in the state of Michigan. The Dancing Queen started immunoglobulin therapy, which is an additional 2.5+ hours each week to give, but is helping her so we're happy. We took the Dancing Queen's wish trip to Florida. There was the holidays. And I've been crazy busy at work.

On the surface, all of these are wonderful things (yes, even being busy at work). And I posted about the big event, the wish, on DQ's carepage and elsewhere, had my happy moment, and now I'm left with what it all really means.

The biggest weight on my mind has been the wish trip. Don't get me wrong. It was amazing and wonderful. I've copied my positive update in the post below, so people don't think I'm not grateful, that it wasn't the trip of a lifetime, that I didn't make memories that will last forever. I did. But, I also had moments that will haunt me.

When DQ was granted her wish, I was so happy for her. I wanted her to have something positive in her life, something to look forward to. I knew why she was nominated and why she was granted. I was the one who contacted Make A Wish afterall. And I specifically contacted them when I did because I didn't know if DQ would be around to make a wish as an older child. I did this. I knew it. And in the year that we planned this trip, I never once felt that this wish trip was anything more than a wonderful experience for my sweet daughter who had gone through hell her entire life.

And yet . . .

The week before we left, we received a check in the mail to cover baggage costs on the flights, gas for the rental car, meals in the parks, and souvenirs for the kids.  Make a Wish had thought of everything so we could have a true experience without worry. At that moment, it started to hit me. This was something beyond nice being done for us. Total strangers were giving us the trip of a lifetime, were taking care of us completely. I felt totally guilty.  We didn't deserve this.

Then, the limo picked us up. We were greeted at the Orlando airport by a volunteer from Give Kids the World. When we got to the village, everything was taken care of for us. There were gifts for the kids, snacks. We were handed thousands of dollars worth of tickets to theme parks.  And at the parks, we got to cut in line for rides or to meet characters. We were first, no matter when we arrived.  The guilt I felt was enormous.

But nobody said anything. Nobody gave us dirty looks. People clapped when DQ hugged Lightening, even though she had cut in front of several dozen kids to meet him a second time. People took one look at DQ and her magic button and stopped to talk to us and make sure we were having a wonderful vacation. Everyone was so very nice.

And in the middle of the first day, it hit me like a ton of bricks: the reason for all of this was because my precious daughter has several life-threatening illnesses. It became more real for me than ever in that moment. I no longer felt guilty, but angry that she had to be so sick to be treated so well. And, in my mind, I challenged someone to complain about our special treatment. I wanted to yell "The price we paid for this royal treatment is our daughter's life!"

And at the same time, I felt incredibly sad. I so wanted to trade it all back. I wanted to stand in line for hours, hearing my kids ask hundreds of times "is it our turn yet?" But, we were on a wish trip because nobody can fix my daughter.

And not a sole complained the entire time we were on the trip. They all knew the price we had paid. I didn't need to scream it at them. They saw it on DQ's face, especially by the end of the week, when DQ looked obviously ill.  Perfect strangers could tell DQ was ill. And not just ill, but fighting for her life. And realizing that truth emotionally, for me, was harder than the guilt.

So, while I can look back and smile at the things we did and cry tears of joy at the memories we created, each time I look at photographs of the specific day the Dancing Queen's wish came true, the first thing I see is a swollen, purple little girl, whose heart was overworked and lungs couldn't keep her oxygenated. And I then I am overwhelmed with the emotions from that day: extreme happiness mixed with utter despair. Why did it have to be her!

(Perhaps you can't tell from this picture, but DQ's lips were purple/blue, her fingers were purple past her first knuckel, and her cheeks are so red because they were stretched out beyond normal due to swelling in her face from blood backing up.)

I will be forever grateful for the gift that was given to our family. We had a week together, without work, without hospitals or doctors, without most of the worries of our everyday lives. We made memories that will make me smile for the rest of my life, but along with that, I will never forget how it made me feel to realize how the rest of the world sees my baby.

Wishes Do Come True

The Dancing Queen's wish from the Michigan Chapter of Make A Wish was fulfilled last week!!! If you recall, DQ wished to meet the characters, especially Elmo and Mickey. So bright and early on Saturday, December 17, a limo picked us up and took us to the airport to fly to Orlando.


Make A Wish arranged for us to stay at Give Kids the World Village, an amazing resort for families on their child's wish trip. The Village is set up just for kids and was so amazing that we could have stayed there all week and had a wonderful time without any theme parks. Here is a picture of us as soon as we arrived at our villa.


We were at the Village from Saturday afternoon through Friday morning. We ate most of our meals in the Gingerbread House where all of the tables and chairs were kid-sized and ceilings were decorated with toys. The angels (volunteers) not only served us food, but carried our trays for us. Right outside the Gingerbread House was a carousel. The kids most have rode it a dozen or more times. Probably a couple of dozen times. They loved it!


The Village also had a giant sleeping tree that snored at us, a water park complete with pirate ship, dino putt putt, a train station with toy trains and a kid train, a life-sized Candy Land Game playground, and lots of other fun things for kids. And every day, when we returned to our villa, there were gifts for the kids! They got stuffed animals (lots and lots of stuffed animals). They got board games, videos, music, and other toys. It was all magical. A special place was the Castle of Miracles, where the kids could play and everyone can see the ceiling covered in over 140,000 stars. Each wish child who had stayed at the Village had a star on the ceiling. Here is a picture of DQ writing her name on her star for the Star Fairy to put in on the ceiling of the Star Tower (an addition built on to fit more stars!)


Both kids also got magic pillows in the Castle of Miracles to have magic dreams during our trip and at home.


One of DQ's favorite things was the ice cream parlor, which was open all day long. We had ice cream every day and we even had ice cream for breakfast! Sometimes, she needed two spoons to eat the ice cream cause it was just so good!


We had so much fun in the Village. The kids smiled whenever we were there and skipped as they walked about! 



We also got passes to Disney World, Sea World, and Universal Studios, so we spent three days at Disney World seeing Hollywood Studios, the Magic Kingdom, and Animal Kingdom. We also took the kids to Sea World. The Mad Scientist and I spent an evening at Universal. Everything was so amazing. We got to the front of the line for everything we wanted to do. DQ was given royal treatment. She had a button from Give Kids the World that told people in the park she was a wish kid, so when we went places, the people knew. We watched lots and lots of parades and in each one, at least one dancer stopped to talk to DQ. Simply amazing. Here is a picture of DQ waiting for the Pixar Parade.


We watched lots and lots of shows.DQ' s favorite was the Mickey Christmas Show in front of Cinderella's castle. Below are some pictures. I tried to capture the pure joy she was showing. These are close, but not true enough. I guess you had to be there to see the utter joy of her being able to sing carols with Mickey and Minnie.





We also did awesome things like eat lunch with sharks, take a safari where a giraffe walked in front of our bus, and see Darth Vadar in person! A highlight was feeding and petting dolphins at Sea World.


But, the main wish for DQ was meeting the characters. And we did that. A lot. We met Jake (from Jake & the Neverland Pirates), Lightening McQueen, Mater, Phineas & Ferb, a green soldier from Toy Story, Buzz, Woody, Pluto, Goofy, Minnie, Mickey, Squidword, Belle (from Beauty and the Beast), Ariel (the Little Mermaid) and Prince Eric, Shamu, and Tinkerbell. There were probably more as well, but I can't remember right now!




One of my favorite moments was DQ meeting Lightening for the second time. We were about to leave after taking all kinds of pictures. DQ ran back and hugged Lightening as only a three year old could do. She just stood there, hugging his headlight, knowing she might not see him again, just like he was a much-loved friend.  The moment was magical (yes, that word again.) Lightening is one of her all time favorites. She sleeps with him every night.


Meeting Mickey and Minnie was pretty awesome too. They came to visit us at the Village, so we got a little more time with them.




DQ was all smiles when she met Tinkerbell. 


But the most emotional moment of the week was meeting Elmo. DQ's initial wish was for Elmo and at Sea World, that wish came true. I was a blubbering mess as Elmo and all of the Sesame Street friends came to meet with us individually after their Christmas show.





This trip has proven that sometimes, wishes do come true. Seeing my baby's wish come true has done so much to help us all. The happiness that has been brought to our family because of DQ's wish being granted is magical. I know, I've used that word a lot, but there is no other way to describe what was the trip of a lifetime and memories I will cherish forever. I've never seen my girl as happy as she was last week. Thank you so much to the Michigan Chapter of Make a Wish and Give Kids the World Village!!!!!!
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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