The real dirt on me

This is based on the list of questions from a former Theme Thursday post.  I didn't have time to do that one in time but here - I finally got to it.  I answered all the ones I thought I had a good answer for.  Thanks Jenn!

1) What's worst drunken episode of adult life?

 

Blacking out in front of my new mother-in-law.  No- not AT the wedding but like 2 months after I married her darling son.  We were all up at our place in Maine & it was HOT as HADES!  Mr. Database & I had gotten a bottle of Rumple Minze to drink on ice.  Well I was really thirsty and as I said - it was HOT!!  So I kept refilling my glass whilst hanging with the fam at the kitchen table.  Next thing I know, I wake up in the dark in the bathroom and every is asleep (thank g-d!).  But how did I get there??? When did I go to bed??? Did someone put me to bed?  After surviving the worst hangover of my life - I asked these questions.  It was very embarrasing but apparently I was fine, just talked like normal and then said I was tired and I went to bed.  Guess what I have never done again?

 

2) What's the dorkiest thing you're gay for?

 

The gayest thing I'm gay for is women.  Enough said.  
 

4) Do you have any irrational fears and what are they?

 

I am dealthy afraid of snakes.  I'm not afraid they will bite me or poison me specifically.  I'm afraid they will breathe at me.  Or look at me.  Or just exist in a real-life type way.  Also, have you read this? Pretty irrational stuff.

 

5) Why do you blog?

 

Because I talk to much.

 

6) If you could have a super power (x-ray vision, invisibility, etc) what would it be and why?

 

For fun? Flying.  Obviously!  For real-skis?  Healing touch because I know too many kids who need it!

 

8) If you could retire anywhere in the world, where would it be and why?

 

Maybe Cyprus.  It was an amazingly beautiful country and we met very nice people.  Either there or Italy.  For the art, the food, & the wine. 


14) What's the worst date you've ever had?

Funny enough - my first date with my husband.  And the second.  The first date, I really wanted to go eat in the North End (Boston).  I had just moved to the area but had loved this Italian neighborhood on previous visits.  I got my first paycheck and I wanted to go out for a nice dinner but I had no one to take.  So I asked Mr. Database - my then new friend withbenefits .  We went & it was like -200 outside, snowy, and though our reservation was for 8, we stood around for like 2 hours waiting for our table.  The management was barely even apologetic.  We have never returned to Dolce Vita that place.  Dinner was good but Mr. D was sooooo uncomfortable and cranky the whole time.  Turns out, he'd never had a woman pay for him and he was not sure how to cope.  So dinner was awkward and it was just not good.  To make up for it, Mr. D wanted to take me out on him.  So he had tickets for Phantom of the Opera.  omgphantom!!! I was pretty much pissing myself with excitement.  The big day comes, we get dressed up, and head to the car.  He looks at the tickets, just to make sure of the time & venue.  And it was yesterday.  We missed it.  I actually cried.  I felt so bad and like a baby but I couldn't stop crying.  So he felt like the worst dude in history.  And yes, we somehow got to date 3 - The Charm they say.  And well, the rest is history.

15) How I lost my virginity.

 

Insert boring - standard - highschool era action.  Nothing special - it wasn't in a phone booth or with Brad Pitt or anything. 

 

17) Is there someone you wish you could apologize to?

 

Yes.  I wish I could apologize to That Person for my previous behavior that was all I could have done at the time but that caused alot of pain.  I wasn't ready for a healthy relationship.  I totally lacked the tools and I was still figuring out how to commit to a healthy life - as in wtf does that even look like?  He got dragged through alot, just waiting and hoping and it burned him alive.  I don't think that was my fault but I'm still sorry.

 

 

19) If you could commit a crime, and absolutely get away with it, what would you commit and why?

 

Murder because rapists deserve to die.

 

23) If you could be a contestant on a game show, which one would it be?

The Price is Right!

 

25) What's one accomplishment in life you are the most proud of?

 

Coming through a really messed up childhood & surviving.  Turning my life around and making something of it.  Breaking the cycle and getting out.  I'm proud of the work I have done to have come so very far.

 

 

What Mr. Database is Thankful For

Mr. Database (my husband) wrote this recently and after many requests, I am reposting it here.  He may guest write from time to time. 

This year has changed my perspective on life - a LOT. In all the usual ways that having a child changes your perspective on life, but additionally in the ways that having a child born with health issues does as well. In the blink of an eye, my wife and I discovered that the pregnancy we thought up until literally the very last moments was going perfectly, can go very sour and you can be left with a whole new set of worries that you never even considered.
As the past several years have gone by, and my life has become more about how it involves someone else (Sara) than it does just me, I have found my views on life and politics changing gradually. My once selfishly motivated desire to see a world in which I wasn't forced to give anything up without wanting to, became one where I could see firsthand the value in mandatory giving via taxation. (And let's be crystal clear - since 2/3 of the federal budget goes to medicare, social security, and medicaid, that is exactly what taxation is. I still have a problem with the amount that goes to unrighteous wars, but I know that most of my money is doing good, and I am happy for that.)

When Moe came, and we found out about her heart when she was 6 days old, that worldview was shattered in an instant, rather than continuing it's gradual decline. Completely and utterly annihilated by the reality of the situation I found our little family in. Having been lucky enough to live in a state that was rich enough to enact the health care reform that it did, I knew that I would not have to go through the same nightmare that my parents did of having my daughter cut off by her insurer for using too many benefits. For someone facing a life that might include a heart transplant and anti rejection drugs that would cost literally millions of dollars, this was a very, very good feeling to have. It dawned on me that watching this same kind of reform being pushed and tested in the national stage was the single most important issue I could possibly think of in my life. Having met so many parents through the groups that Sara and I joined who were going through even worse situations than we were, I realized that all I wanted was for every parent to have the same feeling of security that we did, knowing that no matter what happened to them, their children were going to get the care they needed and deserved.

I am very happy and thankful today, knowing that the hard fight that was put forth to give parents that security will stand. Regardless of any other issues or any other history that was made in the last 4 years, nothing means more to me than that. Parents who I now care about, parents with three month old babies who received new hearts, parents with babies who have had half a dozen cardiac surgeries before they were a year old, parents that sit wringing their hands watching their childs life hang in the balance of the incredibly talented medical professionals that care for them, they can know that their kids will continue to receive the care they need and deserve. Nobody can cut them off, nobody can tell them that anti rejection drugs cost too much, nobody can tell them that their 6 month lapse in coverage means they are on their own when it comes to their poor little broken hearts. I don't care what cost it comes at - right is right, and this is right. I am thankful for every one of the Americans who believes that this is the right thing to do, and for the incredible gift they have bestowed upon my family and countless others.

I am incredibly thankful for the family I have, the friends I have (old and new) and their support this year. Having parents who have been through the ringer with critically ill children, and knew exactly what to say to me when I was feeling at my lowest.

I am incredibly thankful for the wonderful care team that Moe has at Boston Childrens Hospital, and I feel incredibly lucky to be so close to such a talented and dedicated group of people, who have been supportive, responsive, and compassionate. It is impossible for me to overstate how wonderful it feels knowing that she has and will continue to receive the very best care available on earth. We are lucky beyond belief for that.

I am thankful every time I see one of these new friends post on an email list, message board, or facebook that their child has received the organ they needed, while simultaneously being heartbroken for the family who, in their greatest moment of tragedy, saw fit to bestow the gift of life upon a child they did not know, had never met, and had never considered in their lives before someone asked them "Will you donate your childs organs?" I urge in the strongest possible terms, any of my friends who are parents to take a moment to have this admittedly morbid conversation with your spouse about your feelings on the matter. Most people never take the time to have this conversation, because they never think it will ever come up - time is of the essence in the situation of organ donation, and having just gone over an emotional cliff is not the time to discuss it. I urge you for the sake of every family who is out there praying every night for a match, to have that conversation and be that giver of the greatest gift possible.

In darker thoughts, the inner challenge I faced reconciling the beliefs that were instilled in me growing up has gotten worse. I make no secrets of my thoughts on religion, god, and such spiritual matters. I was raised a Catholic, and I was taught my entire childhood in Church and Catechism classes about a loving and caring father figure who watched out for his children. I found this very hard to reconcile with the reality of the life my sister faced, and even more so now. I slip back and forth on an almost daily basis between being angry at a God who I perceive to either be letting these things happen to the littlest of lambs in his flock, or actively causing them to happen, and being apathetic about whether this proves that he is not real in the first place. I simply cannot find the place in myself to reconcile heaping praise on a deity that allows or causes so much grief to be delivered to so many families. Some people find new strength to their faith in this situation, and I simply cannot be one of them. This I am not thankful for in the least.

This has been a challenging year emotionally for me, but I can say beyond a shadow of a doubt that my heart has grown more sizes than the grinches because of it. To borrow a phrase from one of the parents that I have met on this journey, who in turn borrowed it from a parent they met on this journey, my life has become big and wide because of this. To further it, my mind, my heart, and my love have become big and wide. There is no going back.

What I want to instill in my child

Theme Thursday!  I'm a bit late writing publishing this and it's my first one.  I tried to think of this in a funny way.  Mostly I was like eh, I could get sappy and I prefer not to do that.  Or I could be ridic and talk about Star Wars!!!! Maybe I will do both.

The main thing I want to instill in my little Moe (7 months old) is that I want her to love herself.  Simple enough, right?  But not so much.  I want her to love the true part of herself that we know and love in a way that I have never even considered loving myself.  Even liking myself has been a bit of a journey - helped along by lots of abuse neglect loving hands and supportive others.  I mean I've done a lot to guarantee that Moe will have a much better home life and background that I had but I still know plenty of people from pretty awesome families who struggle with the self loathing monster. 

I know part of this struggle is about being a woman in America.  Or in the world.  We are supposed to be super heroes with perfect bodies that never age and somehow always want crazy sex whilst being perfect mommies.  If we opt out of any of those parts by being simply human, simply aging, simply exhausted, or gasp - lesbian *not choosing a man at ALL* - then we somehow fail at womaning.  I want Moe to feel like no matter where her life takes her, that she is 100% perfect and loveable, just the way she is.  I don't mean MYBABYISPERFECT&SHITSOUTPUPPIESANDRAINBOWS!!!.  I mean that she is a human being, worthy of being loved and supported and that her opinions count.  That she is entitled to control what happens to her body and her rights.  That she is beautiful.  That she is valuable.  I want her to smile at herself in the mirror the way she does now when she is 100 years old.  With true self loving and wonder.  *deadhorsedeadhorsedeadhorse* blahblahblah.  This all sounded much better in my head and last night when I told a colleague.

Here's what I said to said collegue.  I've decided that from here on out, I have to be true to myself.  I have to live my life FOR ME and not to impress someone else or to make someone else happy.  And the main reason I feel that was is I realized I can't teach my daughter all that stuff up there if I don't do it for myself. 

And now...the bucket list for my Moe
*Make her love STAR WARS!!! (IV-VI only - obvi!)
*Keep dancing til we drop
*Have wine & cheese
*Bond over shoes
*Laugh til it hurts and then laugh more
*Love Maine
*Teach her and learn with her
*Watch her fall in love someday
*Profit

This post is a part of Theme Thursday, a multi-blog collaboration. This week's theme is: "If you could impress one lesson, ideal, or moral on your children, what would it be?" To read everyone else's posts, or contribute your own please go to:

http://www.somethingclever2point0.com/p/theme-thursday.html

Movie reviews and stuff

OK, I'm writing like a crazy person today.  Moe is not home yet.  Shake it off.  Had to get the Other Stuff discussed but now it's over.

Halloween was last night and it was pretty much awesome!  We had tortilla soup for dinner and even though I had to run away from my bowl constantly to answer the door, I was so happy!  The kids were cute and I like making people happy, even if they are begging, ungrateful, poor mannered stranger's children at my door.  Why oh why are you talking about this.  You said MOVIE REVIEWS, ADD-WOMAN!  Yes Yes I did. 

Best tip of the night was from a young fellow in a Furry costume of some sort.  He was let's say 13.  He loudly proclaimed, fairly randomly, that Scream 4 is THE BEST SLASHER MOVIE EVER!!!!!  Mkay.  This coming from a boy who may have seen a dozen 6 less than 5 horror movies ever.  I know, I used to be just like him.  But I'm not and he's funny.

Me & Database watched Poltergeist after.  It was the bomb-diggity night for Mr. & Mrs. Database, let me tell you.  Too bad I had to go to bed after the first hour.  Did Carol-Ann ever get saved?  WTF knows???

The heart thing Part 2

So what IS CM-Left Ventricular Non-Compaction???

It's what Moe has!  OK that's not really the definition.  Cardiomyopathy is a disease of the heart muscle and for Moe, it means her heart muscle didn't form properly.  Her left ventricle has grooves in it where the wall should be smooth.  This means blood can pool in the grooves and when her heart pumps blood out to her body, alot of it stays in there.  So her heart has to work extra hard to get it's work done.  Which leads to failure.  There is no cure.  The only hope is drugs or a heart transplant if the drugs fail. 

Why does she have it? For her, it's genetic. It's rare - like less than 1:1,000,000.  Almost 1:10,000,000.  It often goes undetected for years, even decades before the person drops of a sudden cardiac arrest.  The survival for that is less than 5%. 

So now what?  I hope she won't be rehospitalized.  We get echos and other tests often and monitor her heart function based on her behavior daily.  If she goes back into failure, we try meds again.  We are lucky they say because at least we know.  At least we know that she might die need extra help to live. 

For me, I'm glad we get to get it.  I'm glad we know going into this that we need to make it all count because we just don't know.  Nobody knows what the future holds and we easily forget that life is precious.  My family just has it thrown in their face a bit more. 

I promise my blog won't make me cry be so serious all the time.  I want it to actually be mad ramblings 80% and heart/reality/Debbie-Downer 20% or less.  But I had to get the baseline done.  Now the elephant in my room is out from under the rug.  Now, let's dance!

The heart thing

***This was meant to be an explanation.  It ended up being The Story.  If you don't want to read an icky story with a great 80's tune attached, skip this.

I started this to talk about the voices in my head my daughter's heart and her evolving - never boring - health life.  What I hope will be a healthy and long life.  The husband Database challenged her to try to visit all the doctors at Children's.  By that, I mean he asked her if there were any other specialists she wanted to meet while we were at it.  She has picked up 2 or 3 since then. 

Right now we see:

Cardiology
Cardiology/Geneticist
Endocrinology
Nutrition
GI (Gastro-intestinal)
*Neurology (not yet seen)
*Neurosurgeon (not yet seen)

I think that is all but I could actually be forgetting one.  The short story (and it's pretty long) is this.  Moe was born 2 weeks late by natural delivery at a birth center induction at a hospital.  She was induced because they thought she had IUGR (intrauterine growth restriction).  For her this means she was normal size but at the end her growth slowed or stopped and they thought the placenta was breaking down so she had to be born ASAP.  As it turned out, the placenta was fine and they think she was small because of her heart.  Fast-forward zen-medicationfree birth in a jacuzzi psychotically painful "natural" birth on pitocin and out pops my daughter who did not, as I suspected, rip through my pee hole.  She had low blood sugar.  The hospital made a mistake and didn't give her enough salts in her IV so she had low sodium and was at risk for seizures and death and on day 3, gets transported to Boston Children's.  (I don't plan to give away my address, phone number, or shoe size) but I have to give props to the people who saved my baby's life and who continue to keep her in the Good Zone. 

Day 6 - Moe is getting much better & goes to a community hospital near my house.  That night she gets tachypnic (way fast breathing) and goes back to Children's. 

Days 7-22ish - Moe is in the NICU and then Cardiac Floor as they discover that while her blood sugar/ electrolyte balance is great now - her heart is failing.  Like really failing.  The day the doctor told us this information, I really didn't get it.  It was like a black out in my head where I heard his words and his "I'm sorry" but I still didn't get it.  It was hours later and the silence from The Database that made me realize this was Real.  Not Fixable.  BAD.  Test and more tests and mind numbing days of procedures and pretty much no sleep.  Moe gets diagnosed with Cardiomyopathy - Left Ventricular Non-Compaction.  Her ejection fraction was as low as 23% I think.  40% or less = congestive heart failure.  60% or better = normal.  Babies like this get listed for heart transplants STAT.  But she looked and behaved and fed and slept like a normal, healthy, but petite baby.  Her doctors were puzzled but we were assigned to the transplant team anyway.  And I love them.

Around 3 weeks, they sent Moe home with a Crap Ton of medicines.  We were beyond terrified and I expected her to quit breathing pretty much after every breath I watched her take.  Days became weeks became months.  Since then she has picked up additional diagnosis of a possible Mitochondrial Disorder, Hypothyroidism, Failure to Thrive, Dairy Protein Sensitivity & um maybe that is all.  She has fallen off the growth charts and is now back to 2% which has us dancing on the ceiling. 

It's been insane but she is off all her heart meds and is currently functioning in the normal range.  Her docs can't explain the recovery but she has been amazingly well on the outside through it all.  She is cute and awesome and smart and all those things you want your baby to be.  Go Moe!

Ugh, so that's the story.  I feel I have explained nothing so I will add a disclaimer at the top.