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.

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!

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? 

Dare I say that I am really planning for DQ's future . . . finally?!? Dare I believe it possible? 

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?

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.

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?

Not a Tiger Mom

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

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

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

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

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

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

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

Yet, I can't be a tiger mom.

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

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

Etching Memories

I laid in my bed this morning, listening to my family playing games with each other. The laughter was infectious as my babies delighting in their pretend adventures as pirates. I ran downstairs; the crocodile in me had to chase Cap'n Hook. When I captured him, we all laughed. I reveled in the sounds and embraced the moment. I tried to etch it all in my mind so I would never forget; never forget the sounds, the smells, the visions, the feeling, the love.

I've done this often--try to capture a moment in my mind. But we were recently reminded how fragile life can be and how all of this can go away in an instant. So, this moment, this morning, I tried extra hard.

I had started to feel like it was possible that the Dancing Queen would have a future. She would grow up. She would go to college, choose a career, be an adult. I began to think that would be possible. She has been looking so good, even sick. I thought we had finally moved passed the hard part. I could put off the major worries for at least a couple of years. Yes, I would have to be concerned about viruses and stuff like that, but the big things, like heart failure and lung disease, could just be underlying issues that are only part of our life in that DQ takes daily meds. I was getting there.

Friday came and changed it all. DQ's pulmonary hypertension is back. That means her heart is working too hard to oxygenate her blood and the pressure from it all damages the pulmonary arteries that are already inadequate. DQ's heart and lungs are being damaged. And the more they are damaged, the harder they have to work to oxygenate DQ's blood. It is a vicious circle and eventually, the damage will be too much. Unlike last time this happened, I already know what choices we have. I've already called all of the specialists. I've heard all of their answers. I know they have nothing to offer.  There is nothing to save her. NOTHING. nothing.

I have always felt in my gut that DQ would die young. I've hated myself for it. I've fought myself over it. I've tried to wish away the feeling. I've tried to will it away. I've even told myself that she will live to adulthood, figuring if I said it enough, my heart would believe it eventually. But my logical side keeps throwing questions as me: how long can her poor body last when it is beat up everyday? How long can an itty bitty heart that has been cut into and sewn shut, pruned, and messed with so many times keep working when it is forced to work so much harder than it should? How can her poor little lungs that take a beating daily keep working? Muscles can be overworked. Her poor little heart is worked so hard. And while it is healthier than it was a year ago, we've now reached her peak (or likely did a couple of months ago). Her heart will start declining again. What does that mean? How much time do we have?

I know nobody ever knows how much time they will have with their loved ones, but today, I wish I could believe that my baby will live a long, happy life with just enough troubles to know the value of hard work and just enough sorrow to appreciate when life is good. I want her to fail and learn from it. I want her to light up in wonder at the sight of winter's first snow. And I want to see her drive a car for the first time. I want to walk her down the aisle as she marries. I want to help her move into her own home and see the wonderful woman she will become. But, I can't even see how any of it is possible.

Today, I am making memories because these may be the only ones we get.

---

Please don't think by my writing my feelings down that we won't be doing something for DQ. I will be pushing like I always do. I've already started the process to have her placed on oxygen at night again. We will be getting her back on meds for PH. And should it progress, I will push for other meds even though the docs think they won't work. I won't be giving up on my baby. I love her too much.

Future

I feel like I've glimpsed the future.

Yesterday, DQ had to be placed on oxygen because of the RSV. That is not surprising. What got me is that just before bed, they gave her steroids for the first time this hospitalization. She did great and probably didn't need the oxygen, but I made it clear I wanted her to sleep, so the nurses let her be. She slept great! Her heart rate was closer to an average 3 year olds heart rate. She slept comfortably. It was as if she wasn't running a marathon in her sleep like she normally does.

DQ obviously needs oxygen. It helps. For the first time, I really see why the docs made her wear oxygen to bed last year. Her special lungs need the extra help and the rest of her body likes it. With the help, she could rest like a healthy child.

Today, DQ is in the best condition she will ever be. In the future, she will only decline absent some miracle. She will need more aids.  I glimpsed the future and I believe my baby will need to go back on oxygen at night. Eventually, she will need oxygen during the day. I don't think we will hit this point any time real soon, but it is there. Since the docs can't fix her lungs, this is her future.

Opinions

I have a lot of opinions. Opinions about politics, about government, about the law, about healthcare, ethics, morality, duty, and so much more. These are the things I thought I would write about when I started this blog. The problem I have is how to state my opinions and not run counter to my professional life. It's not to say that I represent clients who are diametrically opposed to my personal opinions and beliefs, but I never know who the next client may be and I don't want to take a position that could hinder that relationship or my representation of that potential client. That leaves me in a bind.

It is safe to say that I tend to have liberal views. I don't like political parties though. I think allegiance to a political party rather than a core set of beliefs is causing our country to only care about elections instead of governing and care about popularity rather than what is right. Somehow politics is no longer about compromise, but about giving prizes to the people with the most money spent on the topic at hand and lambasting the people who didn't put enough money on the table. It's not right. Any of it!

Unfortunately, I don't have answers. But, I can say this. I believe in taxes. I don't believe in wasteful government. I don't believe in earmarks that skip the majority vote process. I do believe in providing the country a strong military. I do believe in providing our men and women who fight for us with the proper equipment. I don't believe we should continue to concentrate all of our resources based upon terrorism, but based upon our national interests. Really, terrorism is not new and is not going to be stamped out through killing and violence. I do believe in free speech. I do believe in the power of the people. I don't believe corporations are people. I do believe we now live in an oligarchy dressed up as a democracy. I don't believe that is right.

I am scared by what I see in the news. I am scared that unions are being destroyed so that corporations can make more money. I am scared that making money is more important than saving lives. I am scared that education is being sacrificed to cut deficits, but taxation is not considered because the ultra-rich are willing to pay millions in lobbying rather than pay taxes to cover education.

I believe we are better off living in a society and by doing so are responsible for each other. I don't like it when people do nothing and get a check because I work hard. But I don't believe all people are like that. No child deserves to go hungry. No mother should have to chose between seeing their children grow and putting food on the table for them. We will only continue to lose our grip on power in this world if all our children are not given the chance to succeed, if they are all not fed, and if they are all not provided healthcare. I don't understand why our priority is on lowering taxes and not on future generations. Without the children, none of this matters.

Fears of the Future

I read a beautifully thought-provoking post by Law Momma about being the mother to a son yesterday morning.  I sobbed as I read the post because it was so real and true to me.  It raised feelings that I did not know were so close to the surface and those feelings have stuck with me over the past day.  I highly suggest you all read the post, especially if you are the mother to a son.  For purposes of this post, it is enough to know that Law Momma discusses sons growing up and marrying one day, leaving their mother's fold.

I am guessing that I had a very different reaction to the post than most moms.  As a heart mom, I have a special gift that is not given to the normal mom:  I know that my time with my children is limited.  Not only intellectually do I know this, but I know it with my entire being.  I ache with the thought at times. For that reason alone, I sobbed yesterday morning.  Beyond that, I had never considered my children leaving me by their own choice.

I have spent a lot of time particularly over the last year making sure my children know how much I love them.  I hug them constantly, to the point that all I have to say is "Do you know what I want?" and both kids will either say "a hug" or they come give me a hug.  Both of my children frequently tell me out of the blue that they love me.  So, reading the post yesterday morning was jarring because in my mind, this type of relationship would have no end.  Yes, there might be moments of "Bad Mommy" (which I am told at least 10 times a day), but overall, my children would always place me first and in my mind's eye they will always be pre-school age.

Of course, I know children grow up.  Boys become men.  Girls become women.  And they lead their own lives.  I don't talk with my mother nearly as often as I used to (but I do still talk with her a couple of times a week).  But, the thing is, at some point, I stopped envisioning my children growing up.  When TRex was born, I began writing letters to the man I knew he would be.  In the letters, I told him about us and what we were doing and how much we loved him because I knew he would never remember.  I dreamed of giving him these letters when he turned 21 or maybe on his wedding day.  I stopped writing them though when the Dancing Queen was diagnosed. I couldn't force myself to write a letter for my adult daughter who might not be there and because I couldn't write to her, I felt like I could not write to TRex any longer either.  From that moment on, both of my children only existed to me in the moment.

In reality though, my children are growing.  I know this--at least with my head.  I make plans for their future all of the time.  My practical side knows that I must make plans and keep moving forward.  I encourage them to dream big and tell them they can do anything.  We frequently discuss their futures and who they will be and what is expected.  Yet, over the last day, I realized that fear will not allow my heart to believe a future is possible.  I fear if I hope for the future and plan for real, my world will come crashing down.  But, I know that if the world does come crashing down, it is going to hurt like hell no matter what plans are made.  There is no way to hide from pain.  So, as of today, I am attempting to overcome my fear of the future and make plans--real plans.  Instead of saying the Dancing Queen is going to have a normal life, I'm going to give it to her.  I don't know how yet, but I'm determined.