You get bad news often enough, you prep for it. You're hardened. Start thinking: "Bring it on; I can handle anything."
But I can't.
I can't handle most things. In fact, I've been broken so many times, it is a wonder it is possible to break me any longer. Yet, here I am shattered into billions and quintillions of pieces.
I don't know if everything is wrong or nothing.
DQ wore a holter monitor last week for 48 hours. It wasn't the first time she's done this. Hopefully, it won't be the last.
The cardiologist called yesterday. Three years ago when DQ did this test, she had 261 PACs--premature artial contractions. Everyone has those. They are no big deal. But, last week, she had well over 10,000 PACs. I think the word was 10,800 or 10,600. What I KNOW I got right was that 3.8% of the time, DQ is having PACs. This is not necessarily a concerning number in and of itself. It is quite a change though.
Three years ago, DQ had no PVCs--premature ventricular contractions. Last week, she had 51. Again, not that big of a deal.
BUT, DQ had 6 times with 3 PACs in a row and a couple times with 2 PVCs in a row--cuplets. Those could be something. Those are a heartbeat away from dangerous tachycardia and other horrible things that could happen. That I can't type.
But, I think it all.
The cardiologist's first thought was DQ's digoxin dose may be off and she has toxic levels now. We are trying to get her blood tested ASAP to find out. Hopefully, that can be turned around quickly and get her back into a better rhythm. Hopefully, that leads us to an easy answer.
But what if it doesn't?
It hurts to think what could happen and I can't stop myself from thinking.
Tears have been flowing all day.
People walk into my office and I try to wipe my face, but it's no use. I'm just a mom with a child in hospice, given bad news. And once again, we're in limbo land with no answers and so many scary questions.
This may be a blip, but it could be so much worse. And I'm broken.
Showing posts with label fears. Show all posts
Showing posts with label fears. Show all posts
Friday, February 26, 2016
Tuesday, July 8, 2014
Please, eat!
I cried today--big fat tears in the kitchen.
In front of the kids.
I don't hide my emotions from them, but I do try to keep it together normally.
Today, though, it was too much.
The Dancing Queen was complaining of stomach pain. She wasn't touching her food. I tried every trick I have left to get her to eat. I gave her barbeque potato chips for goodness sake! Nothing. She wouldn't eat a thing.
I begged her, pleaded with her to just eat.
She has to eat! This has been weeks now without really eating, on top of a lifetime where she has barely eaten enough. She is looking gaunt. She is feeling sick. She will only get worse if she doesn't eat!!!! I can't let her go; she NEEDS food!!!!!!
Dancing Queen, please eat!
"But, Mommy, my tummy hurts too much. I can't eat."
And then I cried.
TRex tried to smooth things over. "Mommy, please don't cry. It will be okay."
It won't be okay! If she doesn't eat, she will never get healthy again!
I could see that both kids were upset by my emotional outburst and yet there was nothing I could do. I picked DQ up in my arms, held her tight.
I know you hurt. I know you don't want to eat. But is there something, anything, that sounds good? Please, baby, please.
And she just cried in my arms, "No, Mommy."
In front of the kids.
I don't hide my emotions from them, but I do try to keep it together normally.
Today, though, it was too much.
The Dancing Queen was complaining of stomach pain. She wasn't touching her food. I tried every trick I have left to get her to eat. I gave her barbeque potato chips for goodness sake! Nothing. She wouldn't eat a thing.
I begged her, pleaded with her to just eat.
She has to eat! This has been weeks now without really eating, on top of a lifetime where she has barely eaten enough. She is looking gaunt. She is feeling sick. She will only get worse if she doesn't eat!!!! I can't let her go; she NEEDS food!!!!!!
Dancing Queen, please eat!
"But, Mommy, my tummy hurts too much. I can't eat."
And then I cried.
TRex tried to smooth things over. "Mommy, please don't cry. It will be okay."
It won't be okay! If she doesn't eat, she will never get healthy again!
I could see that both kids were upset by my emotional outburst and yet there was nothing I could do. I picked DQ up in my arms, held her tight.
I know you hurt. I know you don't want to eat. But is there something, anything, that sounds good? Please, baby, please.
And she just cried in my arms, "No, Mommy."
Sunday, July 6, 2014
Feeling Bad
I am so ready to move beyond this holiday, this "independence" day. I have felt nothing but trapped this weekend; trapped in a horror movie, playing a key role and watching it all at the same time.
We started our weekend at an unplanned visit to the cardiologist. The Dancing Queen has not felt well for months, so it was time to be seen. The doctor found no change in the heart function, but no explanation for increased symptoms. While the cardiologist basically told us everything she has said before, this appointment was very different.
At this appointment, the cardiologist finally realized that the Dancing Queen is not a baby any more. I could see it in the doctor's eyes and in her demeanor. She actually saw what we see everyday--a six year old who is surpassed in size by three year olds. A six year old, who can read books like nobody's business, who has her own thoughts, fears, opinions, but who eats no more than a toddler. The dichotomy of DQ's face with her missing front teeth and nubs of new ones beginning to show, with her body so small, is jarring in a way. I've had strangers comment that they can't believe she would be losing teeth already. Most people can't see the wise, experienced six year old beyond the little body. Her doctor couldn't either. Until last week.
I've wanted nothing more than the doctor to see what we see--to know that DQ is big and wants to be big, but her heart and lungs won't let her. I've fought with the doc on this. She wouldn't approve a wheelchair for DQ because she said DQ could use a stroller, but DQ didn't want to be a baby anymore and the doc couldn't see that! Yet, on Thursday, when the doc finally saw that DQ is so incredibly small compared to where she should be, she saw that DQ has grown in height, but stayed the same weight, and just looks gaunt, it made everything all the more real for me, especially after seeing the concern I have mirrored in the doctor's eyes.
We left the appointment with new medications for the Dancing Queen. They are supposed to help DQ's heart function and lessen her symptoms, so maybe she could feel better. Unfortunately, the meds haven't stood up to fireworks and fun. DQ is feeling worse than ever (when not suffering from a bug). And it has her afraid, so very afraid of being alone when she dies.
I'm not sure how to calm her any more. We remind her that love never dies. We remind her that we are with her always. We hold her when she cries. But at the end of the day, my baby is afraid to go to sleep because she doesn't want to die alone. We even gave her an extra dose of Valium last night. That didn't help. Tonight, she is sleeping with TRex. But what about tomorrow? How can I calm her fears when I can't calm my own?
We started our weekend at an unplanned visit to the cardiologist. The Dancing Queen has not felt well for months, so it was time to be seen. The doctor found no change in the heart function, but no explanation for increased symptoms. While the cardiologist basically told us everything she has said before, this appointment was very different.
At this appointment, the cardiologist finally realized that the Dancing Queen is not a baby any more. I could see it in the doctor's eyes and in her demeanor. She actually saw what we see everyday--a six year old who is surpassed in size by three year olds. A six year old, who can read books like nobody's business, who has her own thoughts, fears, opinions, but who eats no more than a toddler. The dichotomy of DQ's face with her missing front teeth and nubs of new ones beginning to show, with her body so small, is jarring in a way. I've had strangers comment that they can't believe she would be losing teeth already. Most people can't see the wise, experienced six year old beyond the little body. Her doctor couldn't either. Until last week.
I've wanted nothing more than the doctor to see what we see--to know that DQ is big and wants to be big, but her heart and lungs won't let her. I've fought with the doc on this. She wouldn't approve a wheelchair for DQ because she said DQ could use a stroller, but DQ didn't want to be a baby anymore and the doc couldn't see that! Yet, on Thursday, when the doc finally saw that DQ is so incredibly small compared to where she should be, she saw that DQ has grown in height, but stayed the same weight, and just looks gaunt, it made everything all the more real for me, especially after seeing the concern I have mirrored in the doctor's eyes.
We left the appointment with new medications for the Dancing Queen. They are supposed to help DQ's heart function and lessen her symptoms, so maybe she could feel better. Unfortunately, the meds haven't stood up to fireworks and fun. DQ is feeling worse than ever (when not suffering from a bug). And it has her afraid, so very afraid of being alone when she dies.
I'm not sure how to calm her any more. We remind her that love never dies. We remind her that we are with her always. We hold her when she cries. But at the end of the day, my baby is afraid to go to sleep because she doesn't want to die alone. We even gave her an extra dose of Valium last night. That didn't help. Tonight, she is sleeping with TRex. But what about tomorrow? How can I calm her fears when I can't calm my own?
Thursday, January 16, 2014
Not Strong Enough
I'm not strong enough. I feel myself breaking a little piece at a time. And I'm sure there will be nothing left after a while.
We had the Daisy Investiture Ceremony last night for the Dancing Queen. There were three babies there, from itsy bitsy at a couple of weeks old to about 6 months and then just learning to toddle. Juxtaposed against the group of kindergarten girls running around and having fun, with the big brothers in back playing video games, a giant wave of nostalgia overcame me. My babies have left me and each day they grow more and leave more.
Later, I stared at photos of my chubby little TRex and decidedly not-chubby baby DQ. I cried and cried.
Every parent faces this. We are raising our children to be strong enough to go out on their own--to leave us. But, most of the time, parents still get to see their children after they've grown and gone. But I'm raising one of my children to leave me forever, while still letting her plan her future out of my home, living. This ridiculous balancing act is so hard.
The situation always hits me harder when the doctors actually agree with me that DQ continues to decline. She will be started on a new med this week to help with her symptoms. I can handle sick. I can even handle the effects of the decline. But the more she declines, the closer I am to never being able to hold her again. Never hearing another good night song. I cannot handle that thought.
She has a sinus infection this morning and wanted to go back to bed. Ten minutes later, when she hadn't fallen back asleep, she cried and cried for me because she was afraid in the dark. She never wants to be alone. How can I leave her alone? In the dark? She gets so scared? And as much as I know at death, you are gone, just as you were before you were born, I don't think I will be able to leave her alone. She is supposed to stay with me!!!!! I'm supposed to protect her. And I can't. I can't. I'm not strong enough.
We had the Daisy Investiture Ceremony last night for the Dancing Queen. There were three babies there, from itsy bitsy at a couple of weeks old to about 6 months and then just learning to toddle. Juxtaposed against the group of kindergarten girls running around and having fun, with the big brothers in back playing video games, a giant wave of nostalgia overcame me. My babies have left me and each day they grow more and leave more.
Later, I stared at photos of my chubby little TRex and decidedly not-chubby baby DQ. I cried and cried.
Every parent faces this. We are raising our children to be strong enough to go out on their own--to leave us. But, most of the time, parents still get to see their children after they've grown and gone. But I'm raising one of my children to leave me forever, while still letting her plan her future out of my home, living. This ridiculous balancing act is so hard.
The situation always hits me harder when the doctors actually agree with me that DQ continues to decline. She will be started on a new med this week to help with her symptoms. I can handle sick. I can even handle the effects of the decline. But the more she declines, the closer I am to never being able to hold her again. Never hearing another good night song. I cannot handle that thought.
She has a sinus infection this morning and wanted to go back to bed. Ten minutes later, when she hadn't fallen back asleep, she cried and cried for me because she was afraid in the dark. She never wants to be alone. How can I leave her alone? In the dark? She gets so scared? And as much as I know at death, you are gone, just as you were before you were born, I don't think I will be able to leave her alone. She is supposed to stay with me!!!!! I'm supposed to protect her. And I can't. I can't. I'm not strong enough.
Monday, November 4, 2013
No Voice
I have had nothing to say for a very long time.
At least, that is the way it has felt.
I've had no desire to blog or write in any way. I've been hiding from myself again.
These last couple of months have been some of the hardest I've lived through. (And, so you don't worry, the Dancing Queen has not been declining. In fact, she had a cardiology appointment and she has remained the same--no better, no worse.)
I've been dealing with my own health scare--two large nodules discovered on my right thyroid. One so large that it completely replaced the right thyroid and caused me great discomfort (okay, pain), lots of choking, and some difficulty breathing. And they still don't know if it is cancerous. They don't think it is, but I won't know until Thursday for certain because I had the monstrous thing removed a week ago and I don't see my doc until then.
And while I know that it is probably not thyroid cancer because (let's face it), I have all of the symptoms for Hashimoto's Thyroiditis. And I know that thyroid cancer is one of the "best" cancers to get because it is highly treatable. Having this scare, well, scared me.
I've never felt more adult than I have in the last couple of months. The responsibility of taking care of my family has weighed enormously upon me when I faced the possibility that I might not be able to do it. What would happen to my family if I can't work??????
The Dancing Queen's medical expenses alone would cripple us in a matter of months. Would we have to stop her Hizentra infusions? Would that end her life sooner? We'd definitely have to pull out of hospice care for her until she gets really bad. There would be no more therapist for the kids.
Juxtapose all of those worries with the Dancing Queen's total descent into demonhood upon entrance to kindergarten and I've been a wreck.
DQ did NOT transition well. She was worried, scared, and a little (maybe a lot) paranoid of how she would be treated and seen by the other kids. That led to anger, aggressive outbursts, and many phone calls, meetings, and plans. In September, I was consumed with my doctors' appointments and procedures and DQ's endless parade of horrors. She would make what she perceived as a mistake in art class and start throwing chairs and kicking classmates. I would be called to the school. Or she had a bloody nose on the playground and the nurse took a shortcut back after cleaning DQ up (so DQ could play longer) and DQ started kicking and screaming and flailing about in the hallway because she thought she was not returning to recess. I was called when she wouldn't stop screaming after thirty minutes and was kicking the desks in the principal's office.
There was talk of suspending DQ from school in early October--6 weeks into the school year. Suspending a kindergartner! I can't even tell you the anger, sadness, and confusion I felt. I spent a solid 48 hours researching, talking, planning, and crying, only to have everything resolved and the proposed suspension completely removed from the table.
My life has been a giant ping pong match (ala Forrest Gump) with my head the tiny little ball being smacked between DQ's immediate problems and my overwhelming worry about addressing these problems and those to come if my sickness is worse than expected.
And somewhere in all of my worry, frustration, and fear, I lost my voice. I'm trying to find it now. I have to work through this and the only way I know how is to write and put it out there. So, I forced this blog open today. I made myself write even though I didn't think I had anything to say. Perhaps I'll get there again. Perhaps this blog will just be full of forced ramblings. Either way, I hope it helps me find some semblance of normal in this new and very scary world.
At least, that is the way it has felt.
I've had no desire to blog or write in any way. I've been hiding from myself again.
These last couple of months have been some of the hardest I've lived through. (And, so you don't worry, the Dancing Queen has not been declining. In fact, she had a cardiology appointment and she has remained the same--no better, no worse.)
I've been dealing with my own health scare--two large nodules discovered on my right thyroid. One so large that it completely replaced the right thyroid and caused me great discomfort (okay, pain), lots of choking, and some difficulty breathing. And they still don't know if it is cancerous. They don't think it is, but I won't know until Thursday for certain because I had the monstrous thing removed a week ago and I don't see my doc until then.
And while I know that it is probably not thyroid cancer because (let's face it), I have all of the symptoms for Hashimoto's Thyroiditis. And I know that thyroid cancer is one of the "best" cancers to get because it is highly treatable. Having this scare, well, scared me.
I've never felt more adult than I have in the last couple of months. The responsibility of taking care of my family has weighed enormously upon me when I faced the possibility that I might not be able to do it. What would happen to my family if I can't work??????
The Dancing Queen's medical expenses alone would cripple us in a matter of months. Would we have to stop her Hizentra infusions? Would that end her life sooner? We'd definitely have to pull out of hospice care for her until she gets really bad. There would be no more therapist for the kids.
Juxtapose all of those worries with the Dancing Queen's total descent into demonhood upon entrance to kindergarten and I've been a wreck.
DQ did NOT transition well. She was worried, scared, and a little (maybe a lot) paranoid of how she would be treated and seen by the other kids. That led to anger, aggressive outbursts, and many phone calls, meetings, and plans. In September, I was consumed with my doctors' appointments and procedures and DQ's endless parade of horrors. She would make what she perceived as a mistake in art class and start throwing chairs and kicking classmates. I would be called to the school. Or she had a bloody nose on the playground and the nurse took a shortcut back after cleaning DQ up (so DQ could play longer) and DQ started kicking and screaming and flailing about in the hallway because she thought she was not returning to recess. I was called when she wouldn't stop screaming after thirty minutes and was kicking the desks in the principal's office.
There was talk of suspending DQ from school in early October--6 weeks into the school year. Suspending a kindergartner! I can't even tell you the anger, sadness, and confusion I felt. I spent a solid 48 hours researching, talking, planning, and crying, only to have everything resolved and the proposed suspension completely removed from the table.
My life has been a giant ping pong match (ala Forrest Gump) with my head the tiny little ball being smacked between DQ's immediate problems and my overwhelming worry about addressing these problems and those to come if my sickness is worse than expected.
And somewhere in all of my worry, frustration, and fear, I lost my voice. I'm trying to find it now. I have to work through this and the only way I know how is to write and put it out there. So, I forced this blog open today. I made myself write even though I didn't think I had anything to say. Perhaps I'll get there again. Perhaps this blog will just be full of forced ramblings. Either way, I hope it helps me find some semblance of normal in this new and very scary world.
Monday, July 29, 2013
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.
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.
Friday, June 28, 2013
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.
Friday, May 31, 2013
Night
I wish the same wish every night: Please run to my room and hug me in the morning. Please wake up and yell "mommy". Please don't let this end. Please give me tomorrow. Please find a cure. Please hand me a miracle. Please let me wake from this nightmare. Promise me forever!
And in that desperate plea, the pain is unbearable. Ever fiber of my being screams "there is no other choice but to find somebody smarter; to scour the world once more." I can't give up fighting. Maybe, if I hug her tighter and I wish harder, the answer will come.
And when my mind hits this ridiculousness, I snap back to reality. I flip the tear-stained pillow and claw my way to sleep.
Wednesday, March 6, 2013
Sleepless
I've never been a good sleeper. In fact, I am the biggest loser of sleep. It would take me hours to fall asleep even as a child. I had no idea that people actually fell asleep within minutes of laying down. I simply assumed it took hours for everyone until I moved in with the Mad Scientist. He even used to try to teach me how to go to sleep. It never worked. I could never turn my brain off. Laying down was usually the first point in the day that I had just to my thoughts, so I would think. I couldn't stop myself and it would keep me awake.
Lately though, I'm not sleeping, but this type of not sleeping is different. I stay up late, despite being desperately tired. I just can't get myself to go to bed. I tell myself I'm too tired to climb the stairs. But that's not it really. I sit and watch brainless television or play ridiculous games until my eye lids are so heavy they can't possible stay open. And then, I climb the stairs and fall into bed.
Last night was even more ridiculous than normal. I had only about three hours of sleep the night before because DQ had been up off and on coughing (she has bronchitis). All I wanted to do for the entire day yesterday was take a nap, but I couldn't. There was too much to do. The Mad Scientist and I ate dinner around 8:30 as our norm. At 10:00 p.m., he went to bed. Despite having almost fallen asleep on the couch watching tv, I stayed up. It hit 11:00 p.m. and I still couldn't force myself to go to bed. Finally, at midnight, I got up and went to bed, thinking the only way my eye lids could stay open was if I used toothpicks. I could barely get myself up the stairs. After kissing TRex and DQ, I laid down and fell asleep immediately.
I was so angry with myself this morning--blaming my exhaustion on staying up playing Candy Crush Saga and Ruzzle. When I dropped TRex off at school, all I could think about was "how will I make it through the day?" When we walked into the building, one of the dads asked where DQ was that morning. I explained that she was home sick with her daddy. The dad responded "I hope she gets better soon." and went on his way.
As we made our way to the cafeteria where TRex attends the before school program, he asked me when DQ would get better. I replied "her bronchitis should clear up in a week or two." He insisted that I go further, asking me "But mommy, when will she get all better?" Of course, I had to tell him she wouldn't. He was sad and clung to me tight as I said good-bye. He didn't want me to go.
The woman in charge of the before school program asked if TRex was alright. I told her no, but he would be. I had to explain further since I wanted him to feel safe when I had left the building. In my tired state, I told her that TRex wanted to know when his sister was going to get better, but she's dieing and there is nothing we can do. I sobbed in the middle of the elementary school cafeteria, all the while trying to hide it from TRex.
As I drove away, instead of listening to the news, I was left alone with my thoughts. "How could I say DQ was dieing? What made me cry in the middle of the cafeteria? Why can't I keep my faculties in check?" I screamed at myself: "THIS ISN'T ME!!"
I then started to bargain with myself. "If only you weren't so tired, you would have held it together. If you hadn't stayed up late watching stupid tv, you would NOT HAVE CRIED IN THE CAFETERIA!"
In yelling at myself though, I realized none of it is mindless games and late night tv. I don't want to think about my baby possibly dieing. I didn't want to do it in the cafeteria and I don't want to do it at night. I don't want to think about it! But late at night, unless I'm too exhausted to think, I do think about it. I can't help but think about my sweet, sleeping children, happily dreaming in their beds and how reality is hurting them. When I don't pass out from exhaustion, I can't help but think about DQ's upcoming Pinkalicous birthday party and how this might be her last birthday. My mind won't let me escape the worry over how to help TRex and DQ cope.
But, if I stay up way too late, doing nothing but occupying time--doing the trivial and meaningless--my brain will focus on something other than my thoughts and feelings. If I force myself to stay awake doing something, anything until I'm certain I will fall asleep immediately, I won't have to think about what I don't want to think about.
So, I'm exhausted due to lack of sleep. I have many nightmares when I do sleep. And, in the light of the day, I'm not emotionally prepared to deal with questions or things that come up because I won't let myself ever think about my feelings about DQ's prognosis.
But now I know and I can begin to work toward a healthier way to deal with it all.
Saturday, February 16, 2013
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!
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!
Thursday, February 7, 2013
Is this my life?
I walked into the garage Tuesday morning and TRex and the Dancing Queen were fighting. DQ insisted the Mickey was going to die on Wednesday. His heart was sick and the doctors had nothing more they could do, so Mickey was going to die. DQ was devastated. TRex was fighting with her, telling her "NO! Mickey is not going to die. The doctors keep researching and they are going to find a cure. You're wrong DQ. You can't be sad. Mickey will not die tomorrow!"
This morning, I had the following conversation with DQ:
How can I explain life and death to an almost 5 year old and a 6.5 year old? Why should I have to help my daughter understand when the doctors tell us that they are going to do nothing more to help her feel better; that they're not going to fix her heart; that they don't know what to do?
Monday night, that is exactly what we were told. DQ's heart will continue to go into worse heart failure and the doctors do not know how to make it better. They don't know how to save her. They know she won't grow to be an adult.
TRex was with me when I learned this news. He heard it all. We had to explain to the kids before we could comprehend everything. Why should I ever have to explain this?!?
I hate congenital heart defects!
This morning, I had the following conversation with DQ:
Mommy, I'm sad. People have been hurting my feelings and I feel sad.
"What have people done, Dancing Queen?"
They hurt my feelings, Mommy.
"How did they hurt your feelings?"
They said I'm going to die. And not die as adult like everybody else. They said I'm going to die as a kid.
"Who said that DQ?"
I don't know, Mommy, but it hurt my feelings. I'm very sad. I don't want to die.
How can I explain life and death to an almost 5 year old and a 6.5 year old? Why should I have to help my daughter understand when the doctors tell us that they are going to do nothing more to help her feel better; that they're not going to fix her heart; that they don't know what to do?
Monday night, that is exactly what we were told. DQ's heart will continue to go into worse heart failure and the doctors do not know how to make it better. They don't know how to save her. They know she won't grow to be an adult.
TRex was with me when I learned this news. He heard it all. We had to explain to the kids before we could comprehend everything. Why should I ever have to explain this?!?
I hate congenital heart defects!
Sunday, January 27, 2013
You Don't Know
It seems that I only come back to this blog these days when life is too hard, too messy, too much. I think that is okay. I created this outlet because too many people judged my feelings and my choices when I posted to the Dancing Queen's carepage. I wasn't allowed to worry. I wasn't allowed to question "what if". I wasn't allowed to worry about other children dieing. All because it made friends and family uncomfortable with the thought that the Dancing Queen could also die. I was told that I shouldn't put my energy into strangers I've met on the internet because it only made me sad and introspective. But, the thing is none of those same friends and family have any true idea of what I go through. And when I tried to open up, I was shot down and told "don't worry." Who are you to tell me not to worry? Are you responsible for trying to find an answer? Have the doctors told you they can't do anything? Have you sat in the room with a surgeon minutes before your daughter was going to have her third open heart surgery to be told they would NEVER be able to fix her main problem?
And now, years later, the Dancing Queen appears so well that when I say I'm concerned that the doctors won't be able to help her, I get the same thing--it's no big deal; she looks great! That's all fine and good, but I watched her today in swimming class. She isn't strong enough to lift herself off the side of the pool to slide into the water. She tired from walking the 15 feet of the pool, so much so I thought she might collapse in the middle. She can't keep up, no matter how hard she tries. So, yes, she looks good, but you don't know what you're looking at!
For the past several weeks, we have been in the process of getting more information as to why I've seen DQ decline over this last year. The cardiologists found a significant problem. They told us they could fix it. Then they said they can't. Now they are saying they might be able to, but won't tell us how and whether it will require another open heart surgery. Or we just might have to let it be, which will only make things worse. So much uncertainty, but she looks good. Heart disease is a silent killer! You can't see it lurking beneathe the surface, but you pretend all is fine. It's not you who has to look for minute differences. You're not responsible for keeping her alive!
You're not the one who has to pry her little body off of you when you drop her off at school in the morning because she doesn't want to stay where the other kids get to go outside and run and she can't. You don't have to remind her that the cold air makes it difficult for her to breathe and that is why she stays in. But, she looks so good.
And you've never had to explain to a 4 year old that it wasn't likely to get better. You didn't answer the questions: "Mommy, when I'm a mommy, will I still be sick?"; "When I'm a mommy, will I still not be able to play outside?" Did you have to explain to an almost 5 year old that her heart and lungs were the best they would ever be, so when she was a mommy, it would probably still hurt to be in the cold. Did you grasp for some silver-lining for her; promising that as a mommy, she'd be able to make her own decisions and could go outside if she wanted. And all the while, you begged yourself not to cry because the likelihood she will ever be a mommy is so very slim.
I know she looks good to you. And I know she is much healthier than she was at 2.5 years old, but she not quite 5 and is doing worse than at 3.5. Instead of getting stronger, she is weakening. Instead of being able to walk farther, she is traveling less. Don't let the smile fool you and don't discount my genuine worry. You have no idea because you won't look past the surface.
And now, years later, the Dancing Queen appears so well that when I say I'm concerned that the doctors won't be able to help her, I get the same thing--it's no big deal; she looks great! That's all fine and good, but I watched her today in swimming class. She isn't strong enough to lift herself off the side of the pool to slide into the water. She tired from walking the 15 feet of the pool, so much so I thought she might collapse in the middle. She can't keep up, no matter how hard she tries. So, yes, she looks good, but you don't know what you're looking at!
For the past several weeks, we have been in the process of getting more information as to why I've seen DQ decline over this last year. The cardiologists found a significant problem. They told us they could fix it. Then they said they can't. Now they are saying they might be able to, but won't tell us how and whether it will require another open heart surgery. Or we just might have to let it be, which will only make things worse. So much uncertainty, but she looks good. Heart disease is a silent killer! You can't see it lurking beneathe the surface, but you pretend all is fine. It's not you who has to look for minute differences. You're not responsible for keeping her alive!
You're not the one who has to pry her little body off of you when you drop her off at school in the morning because she doesn't want to stay where the other kids get to go outside and run and she can't. You don't have to remind her that the cold air makes it difficult for her to breathe and that is why she stays in. But, she looks so good.
And you've never had to explain to a 4 year old that it wasn't likely to get better. You didn't answer the questions: "Mommy, when I'm a mommy, will I still be sick?"; "When I'm a mommy, will I still not be able to play outside?" Did you have to explain to an almost 5 year old that her heart and lungs were the best they would ever be, so when she was a mommy, it would probably still hurt to be in the cold. Did you grasp for some silver-lining for her; promising that as a mommy, she'd be able to make her own decisions and could go outside if she wanted. And all the while, you begged yourself not to cry because the likelihood she will ever be a mommy is so very slim.
I know she looks good to you. And I know she is much healthier than she was at 2.5 years old, but she not quite 5 and is doing worse than at 3.5. Instead of getting stronger, she is weakening. Instead of being able to walk farther, she is traveling less. Don't let the smile fool you and don't discount my genuine worry. You have no idea because you won't look past the surface.
Tuesday, January 1, 2013
Mickey is Dying
I was sitting at my computer, losing myself in a little Pinterest before dinner on New Year's Eve. The Dancing Queen walked in, Mickey Mouse in her arms. She had the saddest look on her face.
"Mommy, Mickey is very sick. He may die. He needs to go to the hospital."
I asked her, "Has he gone to your clinic for a checkup, yet?"
"No, mommy. He is too sick. He must go to the hospital. Will you make it?"
I got up and went directly to the basement to build the hospital. It had been waiting since Friday night when DQ got it as a gift from her aunt and uncle (the Editor and Car Guy) and I had to help save my grandmouse.
As I popped out cardboard holes, cut doors and windows, and folded tabs, DQ and TRex discussed the seriousness of Mickey's situation. He needed a cardiac MRI at midnight (it was New Year's Eve remember). Mickey was very concerned about the procedure, but DQ consoled him:
"Mickey, I know you are scared, but mommy is here. I'll have to leave you when you go back with the doctors, but you need this. You are going to die if you don't have your MRI. The doctors will take good care of you until mommy can get back."
I asked DQ why she thought Mickey would die if he didn't have the MRI. She said "Mommy, Mickey's just like me!"
"But, DQ, you're not having an MRI because someone thinks you are going to die. You're having that done so the doctors can get better pictures."
Very seriously, she turned to me and said "Mommy, when you have an MRI, they put you to sleep. Sometimes, when you go to sleep, you don't wake up."
We discussed how scared she was to have an MRI on Friday. I tried to help calm her nerves--tell her it is just like an echo cardiogram (which she thinks is fun), except she would be asleep. I told her that the Mad Scientist and I would be with her, we'd bring Mickey and Lamby, her pacifier, and her computer full of movies. She seemed to be okay, but then TRex said it was time for her to go to the waiting room as Mickey was going back to the MRI.
DQ held her baby close and told him that she loved him. She promised he wouldn't be alone--that the doctors and nurses would take good care of him while she was waiting for him and as soon as she could, she'd be with him again. She let him know it was okay to cry if he needed to and that she always loved him.
Luckily, the Mad Scientist saved me at that point by requesting that I help with dinner. Otherwise, I would have had other things to explain.
I don't know whether to be sad or happy. I mean, I know I am happy that DQ seemingly understood what I was telling her, but so very sad to know she has to understand at 4.5.
Thankfully, today, I've been informed that "Mickey's heart is good. . . . Every day his heart bothers him, but today Mickey's heart is good."
"Mommy, Mickey is very sick. He may die. He needs to go to the hospital."
I asked her, "Has he gone to your clinic for a checkup, yet?"
"No, mommy. He is too sick. He must go to the hospital. Will you make it?"
I got up and went directly to the basement to build the hospital. It had been waiting since Friday night when DQ got it as a gift from her aunt and uncle (the Editor and Car Guy) and I had to help save my grandmouse.
As I popped out cardboard holes, cut doors and windows, and folded tabs, DQ and TRex discussed the seriousness of Mickey's situation. He needed a cardiac MRI at midnight (it was New Year's Eve remember). Mickey was very concerned about the procedure, but DQ consoled him:
"Mickey, I know you are scared, but mommy is here. I'll have to leave you when you go back with the doctors, but you need this. You are going to die if you don't have your MRI. The doctors will take good care of you until mommy can get back."
I asked DQ why she thought Mickey would die if he didn't have the MRI. She said "Mommy, Mickey's just like me!"
"But, DQ, you're not having an MRI because someone thinks you are going to die. You're having that done so the doctors can get better pictures."
Very seriously, she turned to me and said "Mommy, when you have an MRI, they put you to sleep. Sometimes, when you go to sleep, you don't wake up."
We discussed how scared she was to have an MRI on Friday. I tried to help calm her nerves--tell her it is just like an echo cardiogram (which she thinks is fun), except she would be asleep. I told her that the Mad Scientist and I would be with her, we'd bring Mickey and Lamby, her pacifier, and her computer full of movies. She seemed to be okay, but then TRex said it was time for her to go to the waiting room as Mickey was going back to the MRI.
DQ held her baby close and told him that she loved him. She promised he wouldn't be alone--that the doctors and nurses would take good care of him while she was waiting for him and as soon as she could, she'd be with him again. She let him know it was okay to cry if he needed to and that she always loved him.
Luckily, the Mad Scientist saved me at that point by requesting that I help with dinner. Otherwise, I would have had other things to explain.
I don't know whether to be sad or happy. I mean, I know I am happy that DQ seemingly understood what I was telling her, but so very sad to know she has to understand at 4.5.
Thankfully, today, I've been informed that "Mickey's heart is good. . . . Every day his heart bothers him, but today Mickey's heart is good."
Friday, October 19, 2012
Growing Up
My baby is growing up. She is looking so old and so incredibly beautiful. I often marvel at how far she has come.
I mean, look at her. She is simply amazing.
I look at this picture, taken earlier this week, on DQ's first official picture day, and I think "how can this child only be 4.5 years old?" She just looks so much older (at least in this picture)?
So many things she does these days are grown up. Yet, she reminds me that she is still so very little all of the time as well. It is a hard age. She wants to be big. She is big. But she wants to be small. She asks me to cradle her in my arms and hold her like a baby. She is so, so tiny, I can easily rock her in my arms, just like I did when she was a baby.
How did we ever make it this far? How is it possible that I planned kindergarten for her just last week? Wasn't it last month that she was still demanding baby food at every meal? (I guess that was last year.)
I am so proud of my children and how far they have come. I've known that TRex is big for years now. He blows me away with his depth, his compassion, his understanding. Wise beyond his years and unfortunately, gaining more experiences no 6 year old should face. Yet, he takes it all in incredible stride.
Yet, DQ, I've not let myself see her get big. Yes, I agree with her that she is big when she makes the statement. But did I really believe it? She's not big. She weighs less than 30 pounds, but my goodness has she matured.
I can't wait to see what more she will do and who she will continue to become. Who thought this would be possible before she was born or that dreaded day in December 2009, when she was given two years at most to live?
I don't know. Maybe not.
I was drawn to this picture, stared at it for a good 10 minutes late last night, thinking "how did she get so old and why are her lips blue?" I searched other recent pictures to see if was just the lighting, but no, her lips have a constant blueish tint in all of them. Pictures taken at the same of TRex, show perfectly pink lips. When did that happen? Her oxygen has been okay, hasn't it? Why is she blue?
Why do I have to have reminders of the bad when I notice the wonderful?
Monday, September 17, 2012
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.
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.
Saturday, June 30, 2012
Slumber Parties & Parks
Last night, the Mad Scientist and Papa drove to New York to help the Editor and Car Guy pack up their house for good and move to Michigan. That left Ma and I with all four kids. So, we had an experiment. The first of what we hope will be many, many slumber parties with all four kids. The night was filled with pizza, popcorn, movies, and lots of fun. The kids did really well. When the last movie ended and lights were out, they all fell asleep without trouble.
This morning, they played together, ate well, and just had fun. It was so wonderful to watch. My heart swelled with love for all of them and how good they are with each other (even if there was some bickering). Little Car Guy, who should really be called the Screen Bandit, was very good about helping the younger kids. And the younger kids look up to him with so much awe and love. My heart was melting, watching it all.
Before it got oppressive outside, we headed to the park. After half an hour/forty-five minutes, Ma was pushing DQ in the swing and the boys were climbing climby things, so I had a couple of minutes to sit and watch some more. I was in my glory and decided to check my email. The one I was waiting for was there: "Yay! They will vacate on July 29." Our realtor was letting me know that our new house will be completely ours on July 29th! I was ecstatic. My world was complete--my sister and her family are moving close to us so our kids can become best friends, the kids were getting along, and our new house was becoming real! I, of course, called the Mad Scientist to share.
As I talked with him, reveling in the news that we will be moving the first weekend of August, I looked at Ma & DQ. They had stopped swinging and were heading to the shade. I hung up with MS and asked what was going on. Ma brought DQ to me. She had a nose bleed, was complaining of stomach pain, and was obviously in distress. She just wanted me to hold her and I did. Her heart was beating so hard. I tried to round up the boys, but they didn't want to leave. I was hanging on by a thread. DQ had only been swinging. She wasn't running! She had been regularly drinking! SHE WAS JUST SWINGING! My emotions were a roller coaster as my baby was turning limp in my arms.
Ma rounded the boys up and explained why we had to leave. The boys started joking that DQ was dieing. And I broke. I knew she wasn't dieing, but hearing out loud the fear that is always lurking in the far reaches of my mind took me over the edge. I sobbed. I tried not to let the boys see me and DQ was so out of it she didn't really know I was doing anything, but I couldn't hold back the tears. I took DQ in my arms, racing toward the car as Ma continued to talk with the boys, tears streaming down my face.
We got to a picnic table next to the car and sat. DQ with her head on my shoulder and tears flowing like a faucet by then. Luckily, by the time the boys got to us, I had calmed down. I got DQ in the car and we decided to go to one of DQ's favorites--Olive Garden--the one restaurant with gluten free food (for me), vegatarian fair (for Screen Bandit and Chef), and stuff everybody likes. Except DQ didn't want to go. She wanted to go home. My baby was passing up basgetti!
Ma took the boys out to eat and I brought DQ in. She just wanted to sleep, but only after trying to vomit. She is now napping, but not well. She cries out in pain every couple of minutes. I'm sure it was the heat, but it was only about 80. And she was just swinging.
Swinging.
I can't stop thinking that she was just swinging.
I hate this. I hate that my daughter can be so happy, doing the thing she loves most in the world one second, and a puddle in my arms the next. I hate that she continues to have nosebleeds for no apparent reason. I hate that she has so little reserves. I hate that life is so unfair to her. I hate that everyone's day gets turned upside down because DQ's body can't handle life. I hate that I can be riding a huge high and that I let DQ's normal life take me down so low. I want to be able to rejoice in the happy that we have and not let the sad parts get me down, but I don't know how. I want my baby to have one day where she can play with the kids and not worry that she could die if we let her play with the kids.
Friday, June 1, 2012
Am I Bad?
Is it wrong that in looking for a new home to buy, our forever home, I am consciously considering how the home will work when the Dancing Queen's health deteriorates? Is there a bedroom on the first floor for when she can't climb the stairs and is too big to carry (after all, she is 29 pounds now!)?
And should I be condemned because while she is busy planning how her new bedroom will look (pink and purple with butterflies), in the back of my mind, I wonder how much medical equipment will we have to fit? What would you think of me if you knew that I worry if we have steam heat that could pose a problem for an oxygen concentrator?
I love the look of hardwood floors in a home. But, now, as I look for our new home, I see hardwood floors as an added bonus because they will help keep down infections should the doctors decide DQ may qualify for a transplant (which is really the only option she will be left with someday, should someone decide she is deserving enough). Does that make me bad?
The Dancing Queen is doing pretty darn well these days. Since we set a new baseline, DQ is not showing signs of worsening. I feel like we are living a "normal" life, even if it is just normal for us. But I know we are on borrowed time (or is it just time?). Will it be tomorrow? A year from tomorrow? Five years? Twenty? I'm planning for forever. And in the back of my mind, I'm haunted that we're going to build this new home and it will be home from which we tell our daughter goodbye. I can't help it. I want to believe that DQ will be here for much longer than me, but I simply can't believe it. I want to ignore that DQ has ever been sick at all, but that is not possible. I want to embrace that is doing better than ever before, but I know that will not always be the case.
I'm not planning on bringing in the medical bed when we move. But I also can't ignore the fact that we may have to do that in the future. And having these conflicting feelings is really hard. I don't want to plan for a future where my daughter is sick, but I nobody has EVER promised me that won't be her future. They've never even told me it is likely that it won't be her future (like is told to most of the parents of children with tetralogy of fallot). And believe me, I've asked.
Yet, I feel guilty thinking about the practicalities of a DQ's precarious future while buying a new house.
And now that I've said it, hopefully, I can leave the guilt behind?
And should I be condemned because while she is busy planning how her new bedroom will look (pink and purple with butterflies), in the back of my mind, I wonder how much medical equipment will we have to fit? What would you think of me if you knew that I worry if we have steam heat that could pose a problem for an oxygen concentrator?
I love the look of hardwood floors in a home. But, now, as I look for our new home, I see hardwood floors as an added bonus because they will help keep down infections should the doctors decide DQ may qualify for a transplant (which is really the only option she will be left with someday, should someone decide she is deserving enough). Does that make me bad?
The Dancing Queen is doing pretty darn well these days. Since we set a new baseline, DQ is not showing signs of worsening. I feel like we are living a "normal" life, even if it is just normal for us. But I know we are on borrowed time (or is it just time?). Will it be tomorrow? A year from tomorrow? Five years? Twenty? I'm planning for forever. And in the back of my mind, I'm haunted that we're going to build this new home and it will be home from which we tell our daughter goodbye. I can't help it. I want to believe that DQ will be here for much longer than me, but I simply can't believe it. I want to ignore that DQ has ever been sick at all, but that is not possible. I want to embrace that is doing better than ever before, but I know that will not always be the case.
I'm not planning on bringing in the medical bed when we move. But I also can't ignore the fact that we may have to do that in the future. And having these conflicting feelings is really hard. I don't want to plan for a future where my daughter is sick, but I nobody has EVER promised me that won't be her future. They've never even told me it is likely that it won't be her future (like is told to most of the parents of children with tetralogy of fallot). And believe me, I've asked.
Yet, I feel guilty thinking about the practicalities of a DQ's precarious future while buying a new house.
And now that I've said it, hopefully, I can leave the guilt behind?
Monday, March 19, 2012
Can you hear it?
I creep in there each night. I check to be sure they are the proper temperature--that their blankets are where they should be. I find a spare pacifier and put it on DQ's pillow so that I don't have to wake at 2:00 am when she can't find one. I place gentle kisses on each of their foreheads and whisper "I love you" in their ears. I try very hard not to pick them up and hug them tight, so I don't wake them.
Then I listen. I stand in the middle of the room and listen.
Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum.
There it is: the gentle sway of the Dancing Queen's heart beating its own little groove.
I can hear it now in my head as I type this.
Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum.
It's like a dance tune. 110 beats per minute, measured out in perfect rhythm.
And it's always the same . . . until it isn't.
The Dancing Queen's birthday was a complete success. She had the time of her life. But, at the end of the day, her poor little heart and lungs couldn't keep up.
The rhythm is faster now; the breathing harder, making it more difficult to hear.
I guess I should be happy that I can hear the tune at all. And most days I am. But, today, I'm just scared.
Then I listen. I stand in the middle of the room and listen.
Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum.
There it is: the gentle sway of the Dancing Queen's heart beating its own little groove.
I can hear it now in my head as I type this.
Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum. Thump. Thump. Thump. Da dum.
It's like a dance tune. 110 beats per minute, measured out in perfect rhythm.
And it's always the same . . . until it isn't.
The Dancing Queen's birthday was a complete success. She had the time of her life. But, at the end of the day, her poor little heart and lungs couldn't keep up.
The rhythm is faster now; the breathing harder, making it more difficult to hear.
I guess I should be happy that I can hear the tune at all. And most days I am. But, today, I'm just scared.
Saturday, January 14, 2012
I Wish!
I hate being an atheist. I hate it. I hate it. I hate it.
I wish I could believe in God, in heaven, in the hereafter. But no amount of wishing will make me believe something that I do not believe.
Tonight, as I was tucking TRex into bed, he asked about death. He asked what happens. He asked where do you go. He asked about the cemetery and whether everyone goes to the cemetery. The Mad Scientist and I explained that not everyone does. He asked what we will do. The Mad Scientist explained that we plan to give our organs, tissues, and whatever else they need to save another person's life, then cremate the rest.
First, he wanted to know what happened to the ashes. I explained the choices availble and told him about my grandpa's ashes in the memorial garden. "But what if you die mommy, where we will bring flowers?" I had to explain that he could buy my favorite roses and have them on his table to remember me by.
Then he wanted to know why people would donate organs. We of course explained that it was the greatest gift you could give and how tissue donors saved the Dancing Queen's life. On his own, TRex came up with "the gift of living".
Next, TRex wanted to know if it would hurt when they cut you up to get the organs. When I explained that you are no longer there after you die, he asked in a shakey, scared voice "And the doctors do nothing?" I had to say "if you are dead, there is nothing that can be done."
I watched him very closely up until that point. I saw the connections being made. I tried to change the subject to something positive, but it was no use. He needed to go there. "What do you mean, mommy?" I told him that when someone dies, you can't hug them any more, you can't kiss them, you will never be able to talk to them again. "Mommy, that is very sad. Do some people cry when someone dies?"
Of course I responded that most people cry when someone they love dies.
"But what if you die tomorrow, Mommy?"
I was sobbing silent tears. "You will be sad and it will be hard, but you'll go on with your life, make new memories, and be happy. You will always know that I love you forever and ever and always. And know that we live each day to the fullest, loving each other and getting lots of hugs now."
"I wish life didn't have to be that way, Mommy."
"I know, baby. I know. But this is how life is. Everyone is born and everyone dies."
"But I wish it didn't have to be that way."
"Mommy, why are you crying?"
The Mad Scientist stepped in, kissed TRex, hugged him close, reassured him of the wonders of life and how we expect to be around for a very long time. I composed myself. Then I kissed TRex good night again, closed the door to his room, and broke down completely. I have never seen that sweet little 5 year old boy so scared in my life.
I wanted to tell him when you die, you go to heaven. I wanted him to know that there was more, that he'd see us again. I wanted to give him anything that I could to help him be less scared. But I don't believe that. I can't. I've tried. It would so much easier if I believed. I wouldn't have to expose my children to the pain that is this life without the ultimate silver lining.
I guess in the end though, if we make each day count, like we try to do, we don't need the silver lining at the end. We'll make sure we find the silver lining in each day.
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.
Monday, December 5, 2011
Scary Noises
Saturday night, around 10:00 pm, we heard it--the sound that has the ability to stop both the Mad Scientist and I dead in our tracks. I looked at him and I could see the fear quickly envelop his entire being. The tension and stress in the air could be cut with a knife.
Are you wondering what noise could cause such a reaction? Was it the sound of breaking glass or a crackling fire? Was it the sound of sirens blaring or an animal knocking something over outside?
No, the noise was a simple cough, heard over the baby monitor.
We are not overly protective parents by any means. We do not chase after our children with clorox wipes. And, as any regular readers know, both kids attend school and day care, chock full of germy kids with questionable hygiene practices (they are kids after all).
Yet, we totally freak out when we hear the Dancing Queen cough.
We didn't start out this way. If she coughed, she coughed. We treated it like we treat TRex's coughs--a simple cold that would lead to runny noses, but would go away in a couple of days. No big whoop. But, we've become jaded over time. Or are we more realistic?
Either way, we know that all too quickly a cough can turn into something more. We've seen a fever take her from a normal kid to almost intubated in a matter of hours. And 10 day stints at the hospital usually start with just a cough. Even without hospitalization, with each bug, DQ takes one more antibiotic and inches herself closer to the day none of them work any longer. (I counted, since this day last year, DQ has had 27 courses of antibiotics, well over 200 days.)
I'm happy to say that Sunday, she was fine, save some blood in her ear (normal for her).
This morning, she did wake up coughing and complaining of chest pains, so she stayed home from school and saw the doc. It "appears" as though we caught the bug quickly. Hopefully, course 28 of antibiotics for the year will take care of it. Until the bug is gone though, the Mad Scientist sit here waiting for the other shoe to drop. We try not to worry, but we've been burnt too many times before.
Are you wondering what noise could cause such a reaction? Was it the sound of breaking glass or a crackling fire? Was it the sound of sirens blaring or an animal knocking something over outside?
No, the noise was a simple cough, heard over the baby monitor.
We are not overly protective parents by any means. We do not chase after our children with clorox wipes. And, as any regular readers know, both kids attend school and day care, chock full of germy kids with questionable hygiene practices (they are kids after all).
Yet, we totally freak out when we hear the Dancing Queen cough.
We didn't start out this way. If she coughed, she coughed. We treated it like we treat TRex's coughs--a simple cold that would lead to runny noses, but would go away in a couple of days. No big whoop. But, we've become jaded over time. Or are we more realistic?
Either way, we know that all too quickly a cough can turn into something more. We've seen a fever take her from a normal kid to almost intubated in a matter of hours. And 10 day stints at the hospital usually start with just a cough. Even without hospitalization, with each bug, DQ takes one more antibiotic and inches herself closer to the day none of them work any longer. (I counted, since this day last year, DQ has had 27 courses of antibiotics, well over 200 days.)
I'm happy to say that Sunday, she was fine, save some blood in her ear (normal for her).
This morning, she did wake up coughing and complaining of chest pains, so she stayed home from school and saw the doc. It "appears" as though we caught the bug quickly. Hopefully, course 28 of antibiotics for the year will take care of it. Until the bug is gone though, the Mad Scientist sit here waiting for the other shoe to drop. We try not to worry, but we've been burnt too many times before.
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