Thursday, May 31, 2012


My computer bonged. I had a new email. I didn't much care. It was well after close of business. I was trying to finish up the piece of research I was working on before I headed home.

As I closed down the computer, I noticed that the email was from TRex's teacher. The subject was "June Volunteer Calendar". I knew I couldn't help in the class this month, so I almost deleted it without reading. But, I didn't want to miss any other news she might have, so I opened the email. As I read the short email, a gasp caught in my throat: "Attached is the June volunteer calendar. I can't believe the school year is almost over."

The final weeks of kindergarten! Wasn't it just yesterday that TRex was stressing out about starting kindergarten? Wasn't I just freaking out about whether he should even go? How could my baby, so small and innocent, be finishing kindergarten?!?!?!?!?

I began to cry, big fat tears.

TRex has grown so much in the last school year. He is no longer a little kid. He has matured so very much. And he has learned even more. My son who refused to color because he "hated" it, is now drawing intelligible pictures, coloring them, and writing stories for them to boot!

TRex is reading beginning books to us easier than even a month ago. Each day, he learns more. I swear it is exponential. Yet, I didn't realize the magnitude of this growth until that email.

My son will soon be a first grader.

A first grader.

Wasn't I just changing his diapers yesterday?

I'm not ready to be the mom to a first grader . . .

Wednesday, May 30, 2012

Bucket List

Last summer, the Mad Scientist and I had a long weekend without the kids. I reveled in the luxury of extra time to myself. I vowed in this here spot on the web to take more time to myself. Shortly thereafter, DQ got sick and I remembered why I didn't schedule in time for myself. The problem with all of that is both were right. I deserve to do things for myself, yet I still have to take care of my family.  So, for a while now, I've been trying to figure out how to accomplish that goal.

Then one of my circle of pulmonary hypertension friend's daughter was placed on hospice. They created a bucket list for Molly. When it became evident that Molly wasn't going to live long enough to accomplish the vast majority of things on her bucket list, people from across the country and the globe printed off Molly's picture and took her places and gave her experiences so her bucket list could be completed. In Molly's final days, she laid in her bed with her mom, looking at her picture traveling the world. She did so many things. And she continues to do so.

Molly's story made me think. I can't continue to put off my life until tomorrow. While I spend so much time trying to give DQ a wonderful life, I've ignored that for myself. And even though I tell the kids all of the time that nobody knows when they are going to die, something in me keeps saying "wait until tomorrow." So, I decided to start my own bucket list.

The problem is . . . I don't know what things I want to accomplish. I don't want to run a marathon or climb Mt. Everest. If I never swim with the dolphins or learn to play the violin, I'm okay with that.  So, when I started this blog post last week, all I could think of was one thing--visit Iceland.  But, really, I'd rather sit on a beach closer to home, than jump on a plane for a really long flight. So I took Iceland off my list.  After all, a bucket list should be full of things you feel compelled to do and would regret not doing. While I think it would be fabulous to see Iceland, I'd rather be home relaxing with my family.

And so I continued to ponder what would be on my bucket list. Eventually, I came to the conclusion that there isn't any single thing I must do or I will regret not doing it . . . except spend time with my loved ones. I want time to enjoy my family. I want to be with them and see them enjoying life. I want to entertain in my home, inviting friends over, and make them lavish meals that I can watch them enjoy. Or even have a house that is convenient for just stopping by for coffee in the evening to chat. 

I don't want to miss my kids going to bed every night. I want to hug them and kiss them and tell them stories. But, I still want to get them off to school in the morning and kiss them goodbye.

All of these things are very difficult right now because our house is so small. In order for me to be home at night when the kids go to bed, I have to pack up my work for the night, bring it home and clean off the dining room table just to set my computer down. While it only takes about 15 minutes before and after I work, it is a hassle that I just don't want to deal with for an hour's worth of work, so I kiss my babies over the phone and then again when they are asleep. But, if I had an office at home dedicated to my work, it wouldn't take that long. We don't currently have the space for me to have my own office (my kids share a bedroom!).

If I want to cook for friends, we have to squeeze into my dining room/office. Six people fit, sometimes eight, but that requires some people sitting in the other room! This is not conducive to entertaining.

So, in order to make my "bucket list" a reality, the Mad Scientist and I are looking for a new house--our forever home. I am excited and petrified all at that same time. Please wish me luck and when we have some space, you'll all be invited over for coffee or a gluten free lasagna extravaganza! (Yes, I am feeling better gluten free. Can't imagine going back!)

Wordless Wednesday: A Weekend to Remember


Friday, May 25, 2012

If A Tree Falls . . .

Everyone knows the age-old question: If a tree falls in the woods when no one is there to hear it, does it make a sound?

Sometimes, I think that is true for blogging as well. If a blogger posts and nobody reads it, do her words still matter?

For me, the answer is a resounding, YES!

I can journal and I have. Before my blog, when something would get me really worked up, I'd jot it down as quickly as possible (much like most of my blog posts) and then leave it. The goal was just to get it out of me. That would help, but part of the process for me is the follow up. Coming back hours later and re-reading what I wrote, learning from it. I often learn more about what I think and what I feel by reading my own thoughts later and ruminating on them.  The thing is, when I would write my thoughts on a random piece of paper, it would get lost or cause clutter. That wasn't helpful.

So, despite my frequent absences, I will continue to blog. Even if nobody reads this.

Thursday, May 24, 2012


They always say "chicks dig scars". I will admit, I've always found scars sexy on men. Like the guy who plays Prince Charming on "Once Upon A Time", I totally love the scar he has on his chin. That little scar enhances his look. Makes him more real.

I think that is the same for all scars. They make us real. They hold our stories, are evidence of a life we have lived that wasn't a fairy tale.

I have a crescent scar on my left index finger. A reminder of a summer weekend long ago. I was a teenager, chopping rhubarb for my favorite ice cream topping--strawberry rhubarb sauce--and my mother walked in and scolded me for using such haphazard strokes. So I started cutting "properly" and promptly cut my finger down to the bone. It was a clean cut, very straight. My dad, the nurse, decided no need for a hospital and stitches, so he just bandaged it up really, really tight. It was numb for the longest time and after it healed, I would find myself running my thumb over it all of the time. There is still a bump there. It is smaller now. The finger still doesn't have all of the feeling back. It is a reminder to me. I've never cut myself like that again.

Then there are the scars that were placed purposefully. DQ's body is riddled with scars, evidence of the many struggles she has faced in her young life. She has the obvious zipper scar down her chest that doesn't look very zipper like any more since there are three intersecting lines, each various shades of white. She has many smaller, puckered scars from where chest tubes had been placed to drain fluid following her several surgeries. She has a scar on her neck where the surgeon sliced through at the beginning of her last surgery to be prepared in case they accidentally cut DQ's coronary artery when getting to her heart (she now has a gortex shield over her heart to prevent such a possibility in the future).  DQ's arms and legs are covered in small scars from blood draws, IVs, arterial lines, and catheters.

I don't know if I ever saw DQ without these scars. I know we don't have any pictures of her chest before it was cut open. It is who she is.  We call the scars DQ's special scars. We want her to wear them with pride for all that they mean: her badges of honor that declare to the world that DQ has fought to live this glorious life. She has no shame of them. In fact, she will tell you the zipper scar is where the doctors fixed her special heart.

Yet, because scars do tell stories, people often read them without asking any questions. Assumptions abound when it comes to scars.  And we all know what assuming does.

I remember one Saturday afternoon, a long time ago, when TRex was at swimming class and I had taken DQ to McDonalds for a special lunch. As I was waiting in line to get food, DQ raised her shirt over her head (as many toddlers do). All of the people looked at her, then at me with shock. I swear that the woman behind the counter was ready o call protective services on me. She asked me what happened to my baby. I explained that she had had open heart surgery and then everyone averted their eyes and went on their way.

Ever since then, I've been more self-conscious of DQ's physical scars.  I don't like it. That is not the story I want for my baby. I try not to let it show, but my fear of what people think is there in the background. Always.

Harder still are the scars that can't be seen. I've written previously about the scars numerous hospital stays has left on DQ--her fear of doctors and nurses coming to her in the night to poke and prod and test and torture. And TRex's scars from having his sister taken away to the hospital and knowing she might not come home.  What stories do those scars hold? How I do I help my children tell those stories without the scars being defined by someone else?

Monday, May 21, 2012

Can You Say "Strong Willed"?

We have tried very hard to treat the Dancing Queen "normal". We have always let her cry when she was naughty. We didn't give in. We put her in timeout just like we do with TRex. We have purposefully treated her in the same respects as treat TRex, especially with discipline and rules. We don't want her turning into a spoiled brat because she is sick. The Mad Scientist and I decided a long time ago that DQ needs boundaries as much as every other child.

Unfortunately for us, DQ is exceedingly strong-willed. I've always said that is what saved her life as a very little baby when she was so very, very sick. I also knew even then, as she struggled to grab hold of her cords as a newborn under deep sedation, that we would be in trouble when she got older. I always assumed it would be more when she was a teenager though. I never considered that she would make the horrific threes even worse than they normally are and that she would make them last so much longer. (Granted, when she was a newborn, I had not yet learned of the horrific threes. We were barely in the terrible twos with TRex when DQ was born.)

But as much as DQ is incredibly cute and extraordinarily smart and no matter how we disciplined her in the same manner as TRex, she has indeed made the horrific threes last about 2 years now and she is still going strong! My little lady can be a terror. Because of her smarts, she thinks about how best to be naughty and does it in style. Her strong-willed nature serves to make her continue with her course of action no matter what punishment she receives.

She recently lost tv and music in the car for an entire week. She has lost toys. She has been locked in her room. And yet, she continues to push each nerve.

We will put DQ to bed. She will be so tired, yawning and ready.  But then, 20 minutes later, she will giggle and laugh. And when we go up to tell her to go to sleep, she'll put her hands over her face, attempting to hide the biggest of smiles, just mocking us.

She did this last night. We turned the lights out at 7:30 pm (normal bedtime). Both kids were tired, but not overly tired. They should have gone right to sleep.  But DQ didn't. She laughed. She jumped out of bed, running around her room. She giggled. MS and I both went up at various times. First, we warned her of consequences if we came back again. Then, she lost her pacifier until she could calm down for 10 minutes.  Then her pillow, blankets, and pets (stuffed animals).  She still was goofing off and keeping TRex awake. The big guns were pulled out and she lost a toy.  And finally, at 9:00 pm, she had stayed in bed, calm long enough to earn back her pacifiers (the pillow and blankets had been given to her before then).  She then fell asleep.

This morning, DQ was very well behaved, more so than any morning in recent memory. And as she and I walked back to the car after dropping TRex off at school, she told me "Mommy, I don't think I'm going to be naughty any more. I'm going to listen. I don't want to lose anything else."  We then discussed how losing tv, music, and toys doesn't have to happen if she'd listen. She said she understood. I even explained that if she behaved well enough for long enough that she would even get special recognition. She liked the sound of that and promised me she would try really hard to behave. I felt like we had finally broken through to her and were about to turn a corner.

Then, DQ had a rough day at school. She complained of being tired. She was blue a lot. She asked to go to bed early tonight. Both the Mad Scientist and I were worried. DQ was in bed, lights out before 7:15. She promised us she was going to go to sleep. I reminded her of her promise to me this morning.

Yet, less than 15 minutes later, she was out of bed and giggling. I've lost count of the number of times we've had to go upstairs. DQ lost her pacifier for the entire night (the first time ever).  She lost tv for the entire week (after kicking me in playful/joking way as I searched for hidden pacifiers).  She lost music in the car for the week.  Just when we thought she'd calmed down, she jumped out of bed, goofing around some more. She ended up losing two more toys before she calmed down.

Then DQ realized that we meant it when we said she would not get her pacifier back tonight. Oh, the horror!

It is 8:30 now. I'd like to say she is asleep, but she is not. In taking away the pacifier for the night, we've made the point. But I'm afraid this is going to be a very, VERY long night.

Monday, May 7, 2012

A Yupper Honeymoon

I lived in the UP of Michigan (upper peninsula) for four years during college. I used to joke that I moved as far away from home as possible while still staying in state. It was a wonderful time for me. I was learning who I was, what I wanted, and where I wanted to go. And I loved the UP. I love trees. I love hills. I love winter. I love snow. I loved the idea of being away from the shopping malls, materialism, and everything. As soon as I moved there, I felt like my heart had found it's home.  After I graduated, I always assumed I would find my way back to the UP when I "grew up" and live out my days near Lake Superior.

After law school though, I needed a job and I needed to go home to Detroit. So, I did.

Six months later, the Mad Scientist entered my life. Before I knew it, we were married and trying to have a baby.  I knew I wouldn't be moving to the UP (MS hates snow). So, when I had the opportunity to show my new husband where my heart had been before I met him, I took it. The Mad Scientist changed the oil in the car, we packed, and we were off for a week in the UP--our honeymoon nine months after getting married.

It was August and very warm down state, but the UP is different. The weather was nice, but air conditioning was never needed. We could drive with the windows open, enjoying the breeze while we cruised at 55 miles throughout the entire peninsula.

The entire trip was amazing! I had never been a tourist in the UP (not since going there as a kid with my grandma and aunt). And the Mad Scientist had never been across the Mighty Mac.  The two of us cheesed it up and took everything in. We stopped at all of the tourist traps. We enjoyed all of the beaches. It was exactly what a honeymoon should be--part adventure, part relaxation, and just the two of us!
The first stop of our tour: the Mystery Spot near St. Ignace.
We took pictures of the signs marking our spots so we knew where we were on our trip.
Yes, he was standing straight inside the Mystery Spot.
Then we started down U.S. 2.
Lake Michigan to the south of us.
I was the only one brave enough to go in.
The Mad Scientist stayed on the beach!
We noticed an inordinate amount of signs for smoked fish, so we had to take pictures.

The "EAT" restaurant always made me laugh when I would drive by on my way to school. Had to get a pic on our Yupper Honeymoon.
Breakfast on Day 2 at the Navigator in Munising.
Boat tours for Pictured Rocks--our planned adventure for the morning. Cancelled due to dangerous waters.
We went to see the park from land instead.
There was a stunning waterfall.
Miners Castle
Miners Caste with water coming out the hole.
And the honeymooners. Gosh we were young!
We then headed toward the Keweenaw, passing through Ishpeming and the US National Ski Hall of Fame along the way.
We finally made it to Houghton and I took MS to see Michigan Tech, my alma matter. (That is float copper he is hugging.)
We stayed at the Laurium Manor Inn (this is their picture of the inn since we didn't take any on the trip). Since Laurium is centrally located, we used it as our starting point for the rest of our adventures.
The Mad Scientist wanted to take a souvenir. Here was his rock.
He returned it to nature, but we still have the memory.
Another memory was leaving the beautiful spot, days into our journey, after hundreds and hundreds of miles, to realize the oil cap had not been replaced, but left sitting on the engine. We opened the hood and it was still there!
Our next stop, Eagle River.
More falls. The UP is covered in beautiful waterfalls.
I've always loved this wooden arch bridge.
I love him too!

Yes, all of these things are right off the side of the road. No heavy hiking required.

Brockway Mountain
Who would'a thought we'd find a rock that looked like the lower peninsula in Manganese Lake.
This is the hoist.
Yes, that is more copper. We were in Copper Country.
Had to suit up to stay safe and keep warm. It might have been late August, but going into the mine was still cold, even if we were only going on a tour.
On the tram ride down into the mine for our tour.
This is the Jacobsville Lighthouse. To get this picture, the Mad Scientist walked out on wet metal very far. I stayed on the land.
This picture was taken from the same location  as the last, but the Mad Scientist was trying to get me on the shore.
The old lighthouse was turned into a B&B.
As we drove home, we had to take some last photos of the road. This is Christmas, Michigan.

We had a wonderful trip. We played lots of games (especially Mancala). We read lots of books. We ate good food. And we made lots of memories. Best of all, the Mad Scientist was able to know a place that held my heart.

The UP still holds my heart. I know I will never live there again, but we will visit. And someday, the Mad Scientist and I will take the kids to see where mommy went to school. I hope they will learn the love for the trees, the lakes, and even the snow.

If you enjoyed my Michigan memory, please click over to two fellow Michigan bloggers, Jackie at With Just a Bit of Magic and Lauren at Mrs. Weber's Neighborhood, who started a new meme to share Michigan memories. Share your own too!
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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