#TBT: May 2009

Selfish

I realized that I have become very selfish with my good stuff.  I only write when I am feeling bad or angry or desperately sad.  But that is not the majority of my life.  Most of it is good. This blog doesn't see any of that though.

Honestly, I don't really care that I'm not sharing the good with the rest of the world.  I've never written this blog for others.  It has always been about getting my feelings out. Hitting publish gives me catharsis; the necessary release of whatever I need to let go of.

The problem with only writing about the bad feelings or my sadness is that I'm losing the good.  This blog, facebook, and the Dancing Queen's carepage are the equivalent of a digital baby book for me.  And when I don't write out the good things, I forget them.  And in being selfish with what I write now, I'm leaving only a sad and pathetic digital reminder for my future self.

I want to remember the Dancing Queen's magic shows.  She puts on TRex's magician's hat that she has filled with a million random objects, pulls out a magic bouncy ball and then we watch it disappear as she drops it to the ground or stuffs it inside another hat.  Then she bows.

I want to remember how excited TRex has been to really be able to read chapter books on his own.  He has spent the last two and half months reading about one book a day.  He is constantly regaling us with his latest story.  His favorite right now are Jack & Annie "Magic Tree House" books and "Diary of a Wimpy Kid".  He reads for at least an hour every night at bedtime, unless he is right at the end and needs to read a little bit more.  He is always hidden beneath his blankets, in a private cocoon with his book light, his puppy dogs, and his latest adventure.  He barely has time to kiss me good night, but I don't mind because he is learning to enjoy books.

I want to remember TRex swinging the Dancing Queen around as they played together.  An afternoon spent waiting for a party to start and the kids just had themselves and their imaginations.  They were each a king and queen, then we played "I spy".  There was nothing extraordinary, but it is the simple things that mean the most.  That day was full of love.

I want to remember the Dancing Queen doing the "Hot Dog Dance" at the end of her favorite show.

I want to remember the feeling of TRex finally releasing his fear and allowing himself to ride his bike without training wheels!  It was not just another milestone for him, it was so much more.  He had learned that you might get hurt when you fall, but you'll never have the fun of the air on your face either.  He learned that he was strong enough to get back up again. And he learned he could do it, if he just tried a little bit more.

I want to remember DQ singing "Let it Go" from "Frozen" over and over and over and over and over and over and over again.  And I want to remember how she does the same exact moves as Elsa while she sings it.  And how that song and that movie have helped DQ not let fear control her.  I don't want to forget the pride I feel when I hear my baby sing with such conviction because she is letting go.

There are so many more moments that I want to remember.  These are just a handful from the last couple of weeks.  I can't be selfish with the happy.  I will only rob myself of these beautiful memories when all I will want is to remember the smiles.  I don't want to be left with only the sad and angry.

Blowing Out the Candles

TRex will turn 7 a week from Monday.  Since his birthday party is next weekend, we celebrated as a family this weekend by going out to eat Friday night.  TRex chose Maggiano's because of their big rectangle pizza that he loves (DQ and I love it because they offer a good selection of gluten free food).

The dinner was wonderful.  We spent the evening asking TRex to say "th" words so we could laugh at his toothless pronunciations (he lost his top two front teeth this week).  TRex told us about his plans for his Return of the Jedi Party and which of his guests would play each role.  TRex intends to be the Emperor, but good, the Mad Scientist Darth Vadar, and DQ Princess Leia.  We discussed our days and just had fun together.

At the end of our extremely normal birthday dinner, TRex ordered cheesecake.  The Mad Scientist surreptitiously asked the server to put a candle in it.

TRex's eyes grew big as he watched the candle-lit cheesecake come toward the table.  There was no over-the-top singing to embarrass him, so he could concentrate on his wish. And that is exactly what TRex did.  He closed his eyes and thought long and hard about his birthday wish.

After several long seconds, TRex blew out the candle.  The waiter teased that he must be wanting something really big, while DQ begged TRex to tell her his wish.  The Mad Scientist and I explained that TRex didn't have to share because it might not come true.

TRex wanted to share though.  He needed to share this particular wish, so he declared that it was okay to share because it was for all of us.  Then TRex blurted out that he wished that all of us would be together every year on his birthday.  All the while, he was looking at his sister with the most love I've ever seen in his eyes.

I immediately burst into tears, unable to control myself.  I think silent sobbing is a more accurate description. Even remembering the moment right now, I have tears streaming down my face.  I can handle not being able to give my son a life-size At-At for his birthday or telling him we can't send him to the moon, but all he wishes for is his family to stay as it is--together--forever.

Oh how I long for that wish to come true for sweet, sweet boy.  He worries all of the time. No matter how often we remind him that his sister is doing well today, he can't forget that she could be gone tomorrow. And it makes him all the more sad. Hopefully, if his birthday party is as big of a success as we hope, when he blows out the candles on his Star Wars cake, he will wish an average 7 year old wish and forget his very grown up worries.

Hope

My mom gave a bunch of us heart moms necklaces last week.  They consist of a silver circle with the word "hope" written in English on one side and French on the other and a small gold heart hanging from a silver chain.  On Thursday morning, I saw the box sitting on my counter and decided to put the necklace on.

TRex asked me what it was and I explained that Ma had given it to me and to other moms working together to raise funds for new research into congenital heart defects. 

I will never forget his response for as long as I live: "But, Mommy, there is no hope for DQ. Nobody can fix her heart."

He was so incredibly sad, so sure, so lost. 

I tried to explain that you can never lose hope. And just because something is unlikely doesn't mean that it is impossible.  I reminded him that his sister was right there, sitting next to him, loving him.  I deparately tried to not let hope die in him. 

It was only a year ago (10 months to be exact) when he planned to raise the most money ever for heart defect research--sure he'd find a cure for his sister.

What is all of this doing to my sweet, optimistic boy? 

TRex's fears have multiplied over the last couple of months.  He feels surrounded by monsters constantly.  He knows they don't exist, but he still sees them in his room--thousands of monsters surrounding him.

I asked him to yell at the monsters and tell them to go away.  He weakly complied, eager to help mommy: "monsters go away."

I yelled out and asked him again to do the same: "MONSTER'S GO AWAY! MY MOMMY AND DADDY WON'T LET YOU DO ANYTHING BAD TO ME!"

He wouldn't yell.  He wouldn't repeat.

I needed to know why.

"Mommy, I can't tell you." 

Do you know why, TRex?

"I know, but I can't tell you mommy."

TRex, have mommy and daddy ever let anything bad happen to you?

"No."

TRex, do you think mommy and daddy will let something bad happen to you?

He snuggled down into my arms, hugging me closer as the silence filled the room.

F'ing CHD is not only slowly taking my daughter, but it has also stolen my sweet, innocent son.  I can't protect him any longer.  He knows  too much.

Monsters

Thunder boomed this evening at bedtime and TRex was scared. As he searched for his puppy dogs and sunk deeper into his bed, where I had just kissed him goodnight, DQ ran around his room, oxygen cord trailing behind. She ate all the monsters she could find so that her big brother wouldn't have to be scared.

He protested: "But there are more hidden under the bed and in the drawers!"

She ran to the drawers and put her hands under the bed, then gobbled up more of those scary monsters.

She patted her tummy and declared "I'm so full."

But TRex was still scared and just knew there had to be more monsters near his door.

DQ took a deep breath and gobbled up those remaining monsters as well, wiped her brow, and stated in a most matter-of-fact manner "now, I'm really, really full."

As the Mad Scientist and I shook our heads and laughed, TRex was saved.

Compassionate Care

If you don't follow DQ's carepage and you don't know me in real life, you don't know that we were forced to decide a couple of weeks ago if we wanted to pursue heart-lung transplant for DQ or choose compassionate care. After weighing everything, we chose to stop fighting DQ's heart defects and choose life, allowing her to be a kid, doing kid things for as long as possible.  It is the only choice that made sense for our family and the goals we set for DQ's life all along.  DQ was officially admitted to hospice yesterday.

Now that we are no longer searching for answers and hoping for "fixes", life has been utterly calm; almost eerily calm.  I think a lot of that has to do with the drop in endorphins from always pushing for the answer.  We've been in emergency mode for over five years and suddenly, we're supposed to just live.  It is very weird to get used to and we don't really know how to live like this. We go through the motions, spend a lot more time snuggling and having fun, but there is a giant sadness that envelops us and rears its ugly head without notice, rendering each of us catatonic, weeping, or raging, depending on the day and the direction of wind.  We are working through it all together though. And, thankfully, we haven't all broken down at the exact same time, so there is always someone stronger to help us through.

TRex  has been mostly silent, but he is always thinking about his sister.  He is concentrating on the practical aspects.  For instance, this morning, we discussed how little DQ is and she asked if she would be taller than me when she grew up.  TRex responded "you won't live 10 years DQ, so you'll never be taller than mommy."  How am I supposed to respond to that?  She probably won't live 10 years, but I don't want her to give up as if it is inevitable.

Two weeks ago, as we sat at dinner eating homemade, gluten free corn dogs, TRex declared that when he was an adult he was going to the zoo and eating real corn dogs because DQ wouldn't be with him.

And around that same time, he let us know he was discussing DQ's prognosis with his classmate.  I can just imagine the surprise on the other first grader's mom's face if he brought it up to her! It is too bad I know only one other mom at the new school, so I couldn't warn her in advance.

DQ on the other hand, is terribly worried about being alone after she dies.  She is afraid we will forget her and will no longer love her. (Of course, we let her know our love will never end, even at death.)

The Mad Scientist remains the solid, unwavering man most of the time, but does allow himself moments where reality sets in.

Me . . .  I don't know.  I've been angry at times.  I've been very tired, but I don't think that is depression, but more closely related to inadvertently ingested gluten.  Mostly, I'm not sure what to do with myself.  How do I just sit back and let heart disease steal my baby?  I'm not sure how to not fight.

A Brother's Love

Thursday night, I got home after the kids were in bed. I quickly kissed TRex as he was almost asleep. Then I went into DQ's room. She was awake because she had gotten a splinter "from wood" that day and wanted it out. She asked me to do it even though she knew I'd have to use a needle.

So I grabbed a needle, tweezers, alcohol wipes, gauze, bandages, and the Mad Scientist. We asked her if she was sure and she said yes. So we tried to extricate the wood.

DQ screamed bloody murder. TRex woke up befuddled and ran into her room, worried, watching, and scared. We continued for all of two minutes before we realized how futile the exercise was and stopped, splinter still embedded in DQ's finger.

DQ fell fast asleep, but TRex was traumatized. We put him to bed, but he laid there crying, very upset at the thought that we would use a needle on his sister. I explained the necessity and then he understood. Unfortunately, he was still transfixed on his sister.

I tried to get TRex thinking about happy things. I told him that his cousins had signed up to walk with us at the Congenital Heart Walk that day and reminded him of the fun we will have. That made him happy, but didn't stop his worry.

I told him that he had received $225 of donations for the heart walk that day. He liked that too, but was still worried about his sister.

I offered to take the worries myself, but he wouldn't dare make mommy worry. So, we found a triceratops and gave all of his worries to the dinosaur. He was covered in armour, so could definitely take the pressure!

TRex felt better, so I went to leave the room. As I closed the door, I heard him crying again. I went back and he said he was still worried about his sister. I exclaimed "But I thought we gave those worries to the triceratops?"

But mommy, these are new worries.

I had TRex give those worries to the dinosaur, then I suggested he replace them with good thoughts; thoughts of playing with his cousins.

He wanted a better thought. He decided that he would dream of raising the most money ever for the heart walk. He became animated and shouted, "If we raise more than a million dollars we could do so much research! We could help DQ!!"

TRex went to bed happy, dreaming of all the money he can raise for congenital heart defect research. And first thing Friday morning, he came bounding out of his bedroom, piggy bank in hand "Mommy, I want to donate ALL of my money to the heart walk."

Maybe, just maybe, we have found a way to help TRex with his worries. Perhaps being proactive in helping find a "cure" for his sister will make TRex worry a little less.

If you'd like to help TRex reach his goal of raising the most money ever for CHD research, here is the link to his fundraising page: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1028344&supId=367339350.

Someone Other Than Me

For the last several weeks, TRex has been questioning life, death, doctors, and God. He continues to find ways to talk about people who have died from heart problems and then ask if it could happen to his sister. He wants to know why doctors won't save everyone, specifically why might they not save DQ someday (afterall, we've told him he need not worry about his sister because mommy and daddy are bringing her to the best doctors, who are doing everything they can do).  He is questioning just how much doctors can do.

In the mix of that, he met a "best friend" this summer who told TRex all about God and how you will live forever if you just believe.  TRex (and DQ after learning from her brother) have begged me to allow them to believe in God so that they can live forever.  "Mommy, please, please let us believe in God. I don't want to die."

I've lost track of the number of times that I've explained that even people who believe in God die and that they can believe whatever they want, but mommy and daddy don't believe in any god. I've told them to ask whatever questions they have, but they don't think I can answer. So, I tell them to talk with their aunt, but they don't want to.

And so my poor little boy is piecing together life and death and religion all at the same time. The other night, after a discussion of hearts wearing out, TRex decided if he dies before me, he's going to let me know if there is a God. And then he said "And if there is no God, I don't know what I'm going to do." Of course, I explained to him that no matter if there is a God or not, he was going to live a good life, full of love, spent doing good work with the people that matter. He seemed to accept that, but he continues to worry.

Considering I've been having these conversations repeatedly over the last several weeks, I wanted to be sure TRex's worries weren't overtaking his schoolwork.  So, Tuesday morning, I met with TRex's new principal and his new teacher. We were there to discuss TRex's anxiety and how it affects school and to develop a plan for him when his worries over his sister became a distraction.

Wonderfully, they told me that TRex is adjusting extremely well and fitting in with the other kids. He is showing none of the signs he has in the past of worrying over his sister at school. But, they were concerned that he is bringing those concerns home to me. He is obviously pushing the worries out of his head in school (a very good distraction), but he still needs to get them out when he feels safe. He feels safe with me. Me.

Then they hit me. They think TRex needs a counselor so he can give his concerns to someone other than me. OTHER THAN ME!

Alarm bells rang out. My mind was racing: How could they want me to pay someone to take my place?  Shouldn't they be happy that my son is comfortable enough to tell me everything?!? Why would they want me to break that special bond between us???? He is my son!!!!

Luckily, I listened to what they said nonetheless. They love that TRex and I have an open dialogue and that he feels comfortable confiding, but experience tells them that TRex will stop coming to me at some point, probably when he needs it most. When I become too overwhelmed or concerned, TRex may hide his feelings to protect me and then he will be all alone. We need to get him comfortable with someone now so that should something happen down the line, TRex will be covered.

I should be grateful that TRex is in a school that cares enough to look out for him now and down the line (his principal offered to speak with him whenever he felt sad or confused or needed reassurance because of his sister).  And I will be grateful someday. But, right now, I don't want to think about the days when my sweet, sweet boy doesn't want to confide in me. I know they are coming, but I'm not ready to let go.

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.

What?!?

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 . . .

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?

Searching

From time to time, I look at the traffic sources to my blog to see how people stumble upon me. The most common hit is people looking for Jake and the Neverland Pirates stuff. I'm sure coming to this blog is a huge let down for those people desperate to find somebody with the inside track into gear that is desired by all kids between the ages of 3 and 7.  I do promise that should I find Jake toys, I will post about them here.  After all, TRex has decided that this year's birthday theme will be pirates, complete with treasure hunts, maps, and adventure! Just wait for the Pinterest board on that one. If you thought my butterfly board was amazing,  you'll love my pirate board! (And yes, when I started writing this post, the pirate board had not been started, but I thought about it and had to get going. There is less than 4 months until the party!)

Back from my pirate break, another common search that lands on my fair blog is searching for images of kids with 22q deletion syndrome/DiGeorge's syndrome. I truly hope that whomever stumbles upon my blog with that search finds some comfort when they see photographs of the Dancing Queen. I remember clearly searching for images before my girl was born. Since I had never heard the terms velo cardio facial syndrome,  DiGeorge's syndrome, 22q11.2, or Catch 22, I wanted to know what someone looked like. Is it obvious? Will my baby face ridicule simply because of her looks? The thought terrified me when I was pregnant, so much so I was more concerned about the 22q than I was about DQ's heart defects. Luckily, the 22q hasn't thrown us that many curve balls other than the cardiac issues (even if DQ has more "symptoms" than most people I know with the deletion).  And I hope when people see my sweet girl they see the beauty in her and it helps them come to terms with whatever they are dealing with.

Today though, I had a new search land on my blog. Someone searched for images of post op for pulmonary atresia. That search caught me off guard. In the past, people had landed here through searching for images of babies on a ventilator, but never specifically looking for images related to my daughter's specific CHD. I couldn't remember what post would hit on that, so I looked and I read my story from last August. And I cried. I cried a lot.

That post was so clear. It was full of facts. It stated life as it was.

Funny thing though. My emotional side had pushed aside a lot of those facts. I had forgotten emotionally that we were never promised a healthy child. I had forgotten emotionally that the doctors told me point blank on the day of DQ's last open heart surgery that they couldn't fix everything that needed fixing. I had forgotten emotionally that last summer was the best her heart was ever going to be.

I knew all of this intellectually. I've said it over and over and over again. Repeated like a mantra, even here. Yet, reading it all again today, it washed over me like a blanket in the night, suffocating me. (I'm drowning, MS, I'm drowning.)

But when my cry was done, I was ready to move on . . . emotionally.

The Dancing Queen is doing remarkably well for her. She is happy. She is healthier than she has ever been thanks to her army. Her cardiologists are not overly concerned about her swelling. And we are living life. Of course there is t-ball and ballet for DQ. Summer is coming and she is looking forward to the zoo (which we are doing this weekend for the Walk for Wishes), playgrounds, the beach, and a family vacation on the lake. I am ready to enjoy it all.

I hope the person who found my blog searching for post op images can enjoy life as well. A diagnosis of pulmonary atresia is scary to say the least. I have too many friends who have said goodbye to their children from this dreadful disease. I have friends saying goodbye right now. But, I also have friends with children thriving and doing remarkably well with pulmonary atresia. Life is good and these kids know how to enjoy it!

Wordless Wednesday: T-Ball

Tonight was the first t-ball lesson for the kids. No teams yet, just learning the basics.

 

 

 

 

 

 

 

 

 

Innocence

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.

Explosion

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.

Wordless Wednesday: Game Playing

Can you tell what game our two kindergartners are playing?

 Yes, those are crayons in their hands and going into the bucket.

Still not sure of the game? Neither are we, but I'm guessing it was fun.

My Kids

TRex is afraid to be upstairs by himself. He always has been. So, today, when he had to go upstairs to use the bathroom since the downstairs was occupied, his sister offered to go up with him. She stood in the hallway pretending to be Cap'n Hook while he did his business. TRex made sure that DQ knew if she got scared, he was right there for her on the other side of the door. That is how it is with my kids. They take care of each other.

Later today, TRex kept grabbing DQ, annoying the hell out of her. She would yell. That is how it is with my kids.  They fight with each other frequently.

DQ had a helium balloon. She called it her baby. It's string was too short for her to reach it. TRex got a stool, climbed on, then handed his sister her balloon baby.  That is how it is with my kids.  They help each other out.

Five minutes later, DQ needed the stool to wash her hands and TRex held on to it for dear life, not letting go no matter how nice DQ asked.  That is how it is with my kids.  They drive each other crazy.

Right now, TRex and DQ are playing in their bedroom together, having fun.  That is how it is with my kids.  They are best friends.

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.

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.

My Kids

This morning, as we got ready for school, I asked TRex to put his library book some place safe so it was not lost. He chose to place it on the topmost shelf in my bedroom, where no other books sit, right next to a picture of me.  That made the Dancing Queen say "That is a picture of you, Mommy."

I responded "Yes, it was taken on the trip your daddy and I took to Chicago just before we got married.  And the poem on the picture was written by your daddy to me as a gift on our wedding day."

TRex and DQ then decided I had to read the poem because they didn't think it was possible that their daddy had written a poem. (Little do they know that before the Mad Scientist became a YouTube Pooper, he wrote poetry all of the time; lovely, poignant, thoughtful poetry. But, I digress.)

So, I read the poem. And TRex asked "Mommy, why did you and Daddy get married?"

The Dancing Queen squealed with delight and shouted "So Mommy could be a princess! And daddy cried because he loved mommy so much."

Before I could respond, TRex gave her a very serious look and stated "No, mommy and daddy got married so they could have us."

How sweet are the pair of them!