Lost

This October was the longest month of my life. It started in the most horrific of fashions.  I wasn't even sure the Dancing Queen would still be with us at this point. It seems like a miracle to me that she has had a complete turnaround and is back to the DQ we had before the summer. The whiplash of emotions has left me drained beyond comprehension.

I've been here before. I've watched DQ come close to death and fight her way back, but this was so different on so many levels.  The emotional turmoil we faced this past month was nothing short of torture. And even the Mad Scientist wouldn't argue that I was being overly dramatic in this case.

I would be lying if I said I don't have a little PTSD from watching DQ in such a downward spiral.

Last night, she screamed out over the monitor and I about had a meltdown because I couldn't believe it was beginning again. Because my emotions are still so exposed, so raw, when I heard that single scream, I couldn't sleep. I just laid there waiting for the other shoe to drop. Instead, it turned out that we forgot to put an underjam on last night and DQ's bed got wet. Of course, she sleeps so hard that she didn't wake and realize the issue until morning.

You'd think my disposition would cheer with the holidays coming. But not even that can take this pain and fear away.

As of two weeks ago, neither kid believes in Santa or magic.  I've tried hard to let them hold onto some sort of wonderment, but none of it is the same. The excitement is not quite palpable. Everything is less fun and more routine.  The holiday vibe has been lost.  And that is so disappointing.  How can a six-year-old not believe in magic?!? And I was the one who had to take it away from her so that she would understand why Santa would not magic her healthy. The whole situation is devastating.

Couple the loss of magic with the month we've just had, I can't help but wonder if this will be our last Christmas.

Is it any wonder why I'm constantly muttering "F*CK" under my breath?

Children Die

I know a lot of really great parents.  They put everything they have into their children.  They put their careers on hold, wear the same pair of glasses and blue jeans for ten years straight, move to be closer to the place that is best for their kids. They will lose their house, their friends, their sanity to find a cure or a least a reprieve for horrible diseases. They do it all; reach the wall; and then do more.

And in the back of their heads is always the notion that if they do just a little bit more, sacrifice everything, reach every doctor, talk to every other parent dealing with the same issues, the answer will come.  Their child will be saved. Because that is what we are told.  Science has come so far.

And no matter how many times you are told that there is nothing to be done, the answer in the back of your head says: "But try again; there must be something more. So and so's brother's girlfriend's cousin's niece went to Borneo and was saved.  Surely, there is a Borneo waiting for us." 

And even if we don't chase after Borneo and we decide enough is enough, subconsciously we wonder.

As expecting parents, we were never told that our baby could die. Or if we were, it was only "a possibility" just as winning the lotto jackpot is "a possibility".  So when we are faced with the reality that our child is going to die, we can't handle it.  That is NOT the way it happens.  There is a medicine for everything.  Aren't we inundated with commercials everyday stating just that!

So parents sacrifice their lives.  Children endure extra procedures and pain.  And in the end, they die anyway.  Why? Because we aren't told that children die.  We aren't allowed to talk about children dieing unless it is in the context of freak event--completely abnormal.  But there is nothing abnormal about children dieing.  Until modern history, it was abnormal to have all of your children survive to adulthood.  But today, when we are all conditioned to believe that the norm is living to be an octogenarian, parents are afraid to say things are going bad.  Parents, in the midst of sacrificing everything for their last chance to save their child, are all alone because they feel abnormal in losing a child or like they didn't push hard enough.

No parent should have to shield their pain when they need the most support because society can't handle the truth.  Children die. They die every day.  Their parents are wonderful, amazing parents who put everything into their kids, yet the child dies.

Please don't hide from it. Please don't make a parent facing their worst nightmare feel isolated or that they have to protect you. Children do die.

Dragon Mom

Dragon Mom.

DRAGON MOM.

Am I a Dragon Mom?

I heard the term "Dragon Mom" for the first time almost a year and a half ago when I read a poignant op-ed in the New York Times by Emily Rapp.  A Dragon Mom is quite the opposite of a Tiger Mom; she is the mom to a child who will die young and she knows it.  There is no stopping the inevitable, so parenting becomes more about sharing love, smiles, and now, rather than creating building blocks for long-term success.

When I read the op-ed, it stuck with me.  I had of course heard of Amy Chua’s “Battle Hymn of the Tiger Mother” and read articles about it. But I knew that wasn't me.  I knew then that I was more closely aligned with the Dragon Moms than I was to any Tiger Mom.  I even wrote about how I was not a Tiger Mom in a January 2012 post right here on this blog.

But, I clearly remember writing that blog post and thinking "should I add in my thoughts on where I fit as a Dragon Mom?"  The problem was that I felt an affinity to what the Dragon Mom was saying and feeling, but I still had plans for the Dancing Queen. I was still holding out hope that DQ would have a future. I felt conflicted at that time about not wanting to be in either world. In the end, I only wrote about not being a Tiger Mom. I took the easy way out by ignoring the giant elephant in the room.

I realize now that didn't write about Dragon Moms then because I was protecting myself.  I didn't want to admit out loud that part of me associated very closely with being a Dragon Mom.  I mean, how could I think my daughter won't make it to adulthood?!? How could I give up on my sweet baby? How could I not fight with every ounce to get her to adulthood? Wasn't I told all of the time how far medicine has come!?! Isn't my job to do everything in my power to keep her alive into adulthood!!! If I admitted that part of me felt like a Dragon Mom, wasn't I saying that I didn't believe my daughter could ever grow up?!?

And now we've been told that the Dancing Queen will not make it to adulthood.  She won't grow up.

Does that mean I should become a full-on Dragon Mom? How do I know what to do? None of the doctors can tell me what to expect. Does she have a year? Two? Five? Nobody knows how quickly she will decline.  All they know is she will decline and that she won't live to be an adult. The Dancing Queen still has to be around other people. She will still go to school.  I can't let her do whatever she wants and become a brat.  It is hard enough on her now thinking that no kids want to play with her because she can't keep up.  And I can't very well let her eat whatever she wants for dinner either--that can cause her to decline more quickly and be in frequent pain. 

How can I help her enjoy life as much as possible and live every moment to the fullest while still letting her be part of society?  Where is the proper middle ground? How do I know what is best? Where's my self-help book--Raising Your Terminally Ill Pre-Schooler?

Fuck it all! I don't want to be a Dragon Mom!

Ack Attack

Her name was Kayme (pronounced K Me). She was my imaginary friend between the ages of 4 and 6 (I think). She wasn't around long (that I remember) and eventually, she had an ack attack and never came back. At least, that is the story I've been told. At one point, I announced that Kayme had an ack attack and never came back.

I haven't thought of Kayme for years.  But then, the Dancing Queen became enamored with the Pinkalicious books. And in "Goldilicious", we meet Pinkalicous's imaginary unicorn. Last night, after reading "Goldilicous" for the billionth time in a week, TRex asked what an imaginary friend was. I explained and he asked if kids had imaginary friends. So I told him about Kayme.

Fast forward to tonight, when read "Goldilicious" again because it was DQ's choice. After the story, TRex asked me why Kayme never came back after her ack attack. I responded that kids grow out of their imaginary friends and when Kayme had her ack attack, I must have outgrown her.

TRex then wanted to know if an ack attack really was a heart attack. I told him truthfully that I didn't remember, but when I was older and was told the stories of Kayme, I suspected it was a heart attack.

He left it at that and went off to bed.

After I tucked in DQ and went to kiss TRex, he asked me why I didn't try to save Kayme from her heart attack. He didn't understand how I could let her go. Why didn't I call my dad to save her? Didn't I want to play with her any more? I tried to explain that imaginary friends don't last forever and I had other real kids to play with.

Then, we got to the meat of the matter. TRex wanted to know why someone wouldn't be saved when they had a heart attack. I had to explain that sometimes there was nothing to be done. He wanted to know exactly how and why a person could have a heart attack.

Then he was silent for a while.

He looked up at me and asked "Mommy, did DQ have a heart attack?"

No, honey, she never had a heart attack.

The relief on his face was palpable. And luckily for me, he never asked the next question.

Something tells me that I won't be so lucky in the near future.

Scars

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?

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.

Thomas

Have I ever mentioned my girl's imagination? I don't think that I have. Let me just tell you, that girl has a huge imagination. I'm talking colossal.

The Dancing Queen didn't really start to speak until she was 2 and had tubes put in her ears for the first time. But when she started speaking, we started to see her imagination shine through. For years now, the Dancing Queen has been pretending to be characters.

She'll wake up in the morning and declare she is Mickey Mouse. You can't call her by her given name. She will only respond to Mickey. Five minutes later, she'll switch characters, but not tell you until you use the wrong name.  So, I'd call her Mickey and she'd tell me "No, I'm Thomas!", even if I called her "honey".  For the longest time, she would just switch between characters, usually Mickey, Thomas, and Lightening McQueen.

One day, neighbors stopped by (neighbors we had never met). DQ was at the door and the neighbors asked her name. She responded, quite seriously, by stating "TRex". Of course, TRex was in the background yelling "No, I'm TRex!!!"  Our neighbors thought the kids were crazy, but I guess that is fine.

Anywho, DQ's pretend play has continued unabated to do this day. However, since last Halloween, she has become more serious in her play.  Last year, when we dug out the Halloween schtuff, DQ discovered TRex's Thomas the Train costume from when he was two.  DQ fell in love.

She wore the costume as much as she could, but if you asked her, she'd tell you she was going to be Elmo for Halloween (she had had me purchase said Elmo costume in August).

 

 

From that point on, more and more frequently, DQ pretended to be Thomas.  Mind you, she doesn't regularly request to watch "Thomas", but she pretends to be him. Constantly.

This year (when she decided to be Izzy from "Jake & the Neverland Pirates), as soon as the Thomas costume came out of storage, she jumped at the chance to wear it.

What's worse, she took her imaginations to a whole new level. At school, she wouldn't respond to her teachers unless they called her "Thomas".  (We worked on that.)

She had a homework assignment that included a segment on what she wants to be when she grows up. You got it, the Dancing Queen has decided she is going to be "Thomas". She knows he is made of metal, has wheels, doesn't eat, and can't give hugs, but she is certain that when she grows up, she will grow wheels and metal. Last week, she got exciting because she learned that she already had metal in her stent and mechanical pulmonary valve. She decided that meant she was half way to being Thomas! And she claims that she gets plenty of hugs now to last. And she doesn't care that he doesn't eat. (Probably because she doesn't either!) And she determined this week, that when she grows up to be Thomas, she won't have to wear oxygen.

It seems she's got it all figured out!  And I wouldn't dare squash her dreams (even if I have suggested a train engineer is a real occupation).  So, in twenty years, if you see a petite woman coming down the street, dressed as Thomas the Tank Engine, you'll know you've met the Dancing Queen.

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!

Take Me Back Tuesdays: Fireside Inn

From the ages of 4 through 30 (except the two summers when I took the New York and Michigan bar exams), during the third week of June, you could find me at the Fireside Inn on Grand Lake in Michigan. As a child, my life was measured in Fireside. Each year defined by what happened at Fireside.

Fireside Inn is not a luxury resort. There are no maids to make your bed every day. You even have to carry your towels to the laundry area and grab clean ones each day. But it is the best vacation place I can think of . . ., mostly because of family.

My maternal grandma, the original Ma, found this place back in the late 1970s. None of her children could afford to vacation on their own. (For instance, my parents were in the early twenties with two very young children. They owned their own house, two cars, and were both in college at night while working full-time during the day. Vacations were not something in the budget.) But my grandmother wanted all of us to vacation with her so she could see us and spend time with us, so she paid for all of us to go (of those who wanted to--my grandma had 13 children and at the time most of them were married with children, but some were still in high school).

And so it began. My entire family would travel 6 hours up north. Each family would have their own cabin. Grandma would have a room on the porch. And we'd have fun for a week together. All of us together: cousins, aunts, uncles, and grandma. Eventually, family friends started to join. My parental grandparents came. My maternal cousins' grandparents came. There are 18 cabins at Fireside and at some point, my family and their friends and family occupied almost all of them.

Back then, activities ranged from swimming, fishing, paddle boating, tennis, tether ball, volley ball, billiards, ping pong, board games, and whatever else you could bring or imagine. We'd take walks through the woods, put on plays, arrange family olympics, costume day. We did it all and we loved it.

At nights, we'd have bonfires with smores and hot dogs. Our parents would play poker through the night. We'd look at stars and I've even seen the Northern Lights from there.

Despite only spending one week a year there, I feel like I grew up at Fireside.

The trees are familiar and like home.

Eventually, I brought my husband to share in the experience (although, he wasn't my husband yet in the picture below--you can tell because he has no beard).

We created memories at Fireside, like days spent with my paternal grandma before she started to really forget all of us. Memories with my nephews. (Fireside was the only time I got to spend a week straight with them since they live in another state.)

I got to spend a lot of quality time with my parents and the rest of my family, just talking and playing games. It was amazing.

As the years went by, we continued to create memories. (As you can see from the picture, the Mad Scientist had a beard, so we were now married!)

We swam. We played. We enjoyed the days without worry or work.

We ate the best pancakes ever. I've been trying to find their rival down state to no avail.

Eventually, we even brought our baby TRex to Fireside. (He tried to escape our cabin to get to the lake.)

We have great memories taking TRex to Fireside, but he won't ever remember it. He was not even one when we last went.

The Dancing Queen was born before our next trip to Fireside. And when we learned that she was going to be hospitalized and have surgery right after being born, we cancelled our reservations for 2008, but we made more for 2009. 

In 2009, we couldn't go because DQ had surgery again and we had to take so much time off of work for that and all of DQ's hospitalizations. In 2010, we had similar problems. Of course, during that time, the economy went to hell and less of my family attended each year because of the economy. This year, nobody from our family went to Fireside. The tradition has died and a little part of me has died as well. 

I hope to start another tradition some day with at least my sister's family and my parents, but it likely won't be at Fireside as that is too far from the Editor. And it will never be the same because the entire extended family will never be together like they once were. I mourn the fact that my children will never have the experience that I had growing up at Fireside Inn.

Do you have a place that holds your heart?

Take Me Back Tuesdays: 1990

I was driving home from work the other night when a song came through my shuffle. I was immediately taken back to 1990. I was sitting in my parents' living room, the burnt orange sheers casting a glow over me. I was on the couch, doing word searches. No more cares in my mind. No more worries of adult life. I was thirteen again, rockin out to a favorite tune.

And let me tell you, I LOVED this song. I found a word search book in my old closest a couple of years ago. It was covered with "Jon Bon Jovi" and "Blaze of Glory is the best song ever!" As I drove, I felt that same exhilaration of the song. Silly as that may be.

But with the final cord, the moment ended and I was back in 2011. Back driving down the express way, going home after working way too long of a day.

What song takes you back every time?

Rainy Tarmac

We stood in the rain for at least an hour, waiting. The excitement was palpable even if the we were cold to the bone. This is what we had worked toward through endless practice sessions over weeks.  We were not going to let a little rain stop us. We all knew the songs, knew them better than any songs we'd done before. This was to be the most important concert ever. I held my flute so tight, waiting for the moment to play.

There were maybe 30 or 40 of us 5th and 6th graders in the band.  All of us had only been playing for 6 to 18 months. We stood in front of the crowd of elementary school students. They all had umbrellas, but with our instruments, we couldn't hold them. So we stood in the rain and waited.

Then his plane landed. We started to play as he came out. He was going to hear us play. I could barely move my fingers because of the excitement, fear, and awe.

Then it happened.

He was surrounded and bundled away. He never heard a note we played. The car took off. We stood there stunned. Wondering what we had done.

Later, we learned that there had been a bomb threat. The president was much too important to permit to stay on the base. Yet, an elementary school's worth of children stood on the tarmac in the rain during the threat and word one was not uttered. They never bothered to move us.

That was the day I started to grow up. I learned what politics and government were all about: saving politicians, not saving the future.  As I drove by that tarmac again tonight, lit up waiting for a plane to land in the rain, I thought about that day and realized nothing has changed, except the faces of politicians who sacrifice the children to save their own jobs.