Tuesday, January 31, 2012

How do you parent?

This morning was not one of my finest parenting moments... I wish I could say it won't ever happen again, that I've learned from my mistakes and will now be more effective instead of affected but that would be a lie.  I am human... I have a temper... I hate to be disrespected.  I also want to raise responsible, driven, respectful, and empathic children and expect a great deal from them.  They are capable of it and it is required in our household.  To have blatant disregard for others and for what is asked of you is not tolerated... throw in some self entitlement and a know it all attitude and you've got yourself the behavior I witnessed from 2 of our 4 children last night and this morning.

When I first sat down to blog about this I was angry... way too angry.  I typed up several sentences all stating how completely appalled I was at them, particularly the Teenager.  None of it was sitting right with me though... yes, their behavior was appalling, that was accurate but there was something I was missing.  Then I spoke to a friend and realized my responses were too tied up in how I perceived their behaviors and actions to reflect on my parenting skills rather than viewing them as their own persons with free will.  Yes, they were wrong, they did not do what they were told to do, they ignored explicit instructions numerous times and when consequences were given there was more disrespect.  They did not own their mistakes and instead they chose to argue and lie, but, it wasn't personal.  It wasn't about me... it wasn't because we didn't teach them any better.

I will say it again, they were wrong.  They will be wrong again and again... they are 9 and 14... they will make lots of mistakes.  How can I be effective though?  How can I help them to see that their choices and lack of responsibility is not a short cut.  It will not help them?  Taking the easy way out doesn't work.  Not taking responsibility for your actions and choices, needing to place the blame on someone else is not acceptable.  It seems these are near impossible habits to break.  We continuously correct the behavior.  We try to teach them how this mentality will backfire but they haven't learned it yet.  We are always there demanding that they fix things before it's too late and the consequences are greater... particularly for the teenager.  Because we are the ones presenting them with the consequences I don't believe they've been able to make the connection.

How do I get them to understand that our punishments are nothing compared to what they would suffer later?  How do I keep it together when it happens for the millionth time?  How do you not lose your cool?

*on a side note... I googled positive parenting and one of the first sentences in link that came up said "Every parent goes through times when they want to shout at their kids to get their point across,".  I found this highly amusing... do you think this person really has kids?  I promptly closed the link.  ;)

Sunday, January 29, 2012

I hate it...

I have a lot to say... there's so much on my mind but it's too tangled and jumbled to get it out.  I have heard this from several different people... my friend, who writes Cira's Lyrics, said recently "I always think to myself it is when I have the absolute most to say, that I end up saying nothing.".  She's a smart lady...

I guess I will start with the Monkey... as I said before he has a lot of appointments coming up.  Wednesday he is scheduled for his first unsedated MRI (4th MRI in all).  I am so glad they are not going to put him under, it's really dangerous for him and each time his reaction seems to get worse.  I know it will be hard for him to stay still and to tolerate the noise but I also know he can do it.  I am trying to prep him for it but I'm not sure there is a way to truly prep a 7 year old for an hour and a half MRI.  I'm not sure how far self or assisted imagery is going to get us.  Hopefully he will be able to take some breaks in between...  He had a dream Friday night that he was in the hospital and the doctor wouldn't allow me to stay with him, Adam and Claudia were there though.  In his dream Claudia kept talking and moving and the doctors kept starting his procedure all over again.  He said it was the worst dream he ever had.

I hate this... I don't want to hold my son down for one more procedure.  I can't listen to him cry and beg me to let him go even one more time.  I can't lie to him any more... I can't make any more promises that probably won't be fulfilled.

But I will... I will and I will hope and pray that this time is different.  That this time we get the answers I've been promising him, that this is all for something... that he will be helped.


Thursday, January 26, 2012

"Best Dinner EVER!"

I don't make New Year's Resolutions... it's that whole fear of public failure thing I've got going on but this year I decided I would work on a few New Year's Suggestions.  ;)  One of them is to get out of the dinner rut.  I love to cook, love to eat, and love to make food that I hope people will enjoy... but then life happens and it's chicken or pasta cooked the same old way.  Kevin never seems to mind this as he's such a creature of habit but it drives me insane!  So, my goal is to make at least 1 or 2 new dishes a week and it's going really well.  This week we've had a new "recipe" every night and let me tell you last night was fantastic, and ridiculously easy!  The kids declared it the "Best Dinner EVER!!!".  That's a win in my book!

*once again, these recipes were inspired from pinterest!*

Roasted Tomatoes with Shrimp and Feta

Ingredients

Directions

  1. Heat oven to 450° F. Place the tomatoes in a large baking dish and spoon the olive oil and garlic over them.
  2. Sprinkle with ¾ teaspoon each salt and pepper and toss. Roast on top rack of oven for 20 minutes.
  3. Remove baking dish from oven and stir in the shrimp, parsley, and lemon juice. Sprinkle with the Feta.
  4. Return the dish to oven until the shrimp are cooked through, 10 to 15 minutes. Serve warm with the bread.   direct recipe link 
I only modified the recipe slightly... I used half a container of grape tomatoes and left them whole.  I also omitted the fresh parsley, because we didn't have any, and I didn't use a whole cup of Feta because Kevin isn't crazy about it.  He didn't seem to notice there was even any Feta in it at all though.  It was so good!

You must serve this with some type of wonderful crusty bread... the sauce it makes just screams for it!  So we made garlic bread... I'm sure you all know how but just in case here's a recipe. (I omit the parsley here too)
Garlic Bread 



The only bad thing about a recipe like this is that there's never any leftovers for lunch the next day!

Tonight it's homemade pizza... the kids have voted and we're having cheesy bread, bbq pulled pork pizza (left over from the other night), a regular cheese and pepperoni, and lastly, my favorite, caprese pizza.  Yum! 
(Leave a comment if you want any of those recipes.)

Wednesday, January 25, 2012

Self fulfilling prophecy

The Teenager joined the wrestling team this year and it's become an amazing outlet for him.  He has always seemed to have an immeasurable amount of energy and the 3 hour practices 6 days a week really help take care of that.  ;)  It took us, him, awhile to find the right sport... baseball is too slow, by the time the ball was actually hit to him he was in another world, Soccer and Basketball were a little better but they took too much attention and multitasking, wrestling on the other hand is perfect.  It's one on one, the matches aren't terribly long, and it allows for so much sensory input that he's good for hours upon hours after practice.  It's like getting 3 hours of intensive occupation therapy in a sensory room made just for him!  Amazing!

We were able to attend our first meet today.  Unfortunately, the Teenager didn't have a match since there was no one in his weight class on the other team but I am sure I would be re-missed in not at least mentioning that he is 2 and 0 right now.  We did get to see his friend wrestle his first match though and also stayed to watch the majority of the matches.  It's been awhile since I've been to a wrestling meet... 15 years or so... and I must say that my perspective hasn't changed much.  Still not sure I can grasp the desire to roll around on smelly mats while smushed against someone else's sweaty body all the while trying to grasp and grapple at your opponent so that you might be able to hold him down long enough to win.  It's all looks so painful and icky!

But then I continued to watch these boys face off and I couldn't help but see how driven they each were.  They wanted it... they wanted to win... and they were giving it all they had.  What really stood out though was the level of respect they all showed each other.  I was so impressed!  Kids, especially teenage boys, get such a bad rap... it seems we always hear how selfish they are, how they're lacking respect and any type of human decency, I am guilty of the same accusations too, but that isn't what I saw today.  They were all kind to each other and they were even very respectful to the opposing team.  There was a wonderful sense of comradery.  The older, more experienced boys were there encouraging and mentoring their younger teammates and the younger kids were in such awe.  I could feel the pride they each have in their team and I was proud of them.

To me this speaks to two factors... The coaches must be doing a phenomenal job with these boys.  They are instilling such a sense of self worth in them that it is gifted upon all those that they cross paths with.  If we teach our child that they are valuable and that each person is worth that same sense of value then they will rise up to that.  Which brings me to the second factor... When we expect greatness and integrity from "our" children then that is more than likely what we will be met with.  They are capable and of achieving amazing things.  They are also able to do so while helping others along the way.

Trust me, I know how infuriating they can be, and it doesn't start at 13!  But with some extra patience (please don't ask me where to find that though) and the belief that everything we instil in them is there, just waiting for the moment to come out and shock the hell out of us, we will make it through the teenage years... and they will too.

"Treat people as if they were what they ought to be and you help them become what they are capable of becoming." -- Goethe

Tuesday, January 24, 2012

Oh Pinterest... how I love you

If you don't know what Pinterest is you are missing out on a whole new online social connection and inspirational obsession... cause you know, we need another one of those things to glue us to the computer!  ;)  Seriously though, it's so cool!  Send me your email and I'll hook you up with an invite.

The best way to describe it is as a virtual scrapbook or visual bookmarks.  Basically, you "pin" things that catch your interest (get it pinterest)... whether it's a recipe, a craft, a quote, whatever.  Once you find something you want to pin you can categorize it into a folder.  From there it's shared with whomever is following you.  You can also repin ideas from your friends or the people you are following.  I believe I opened my Pinterest account in May and I have almost 2000 pins.  LOL!  I'm obsessed I tell ya!  It's so fun though and super simple... so easy to just click away.  Now, the question is, when will I find the time to try everything out.

Here are some of our favorites...

Cheddar Bacon Ranch Bread












  


Sock Bunny DIY


Cherry Blossom Tattoo

  

So, you get the idea... anything goes.  You see it, you like it, you pin it... and it's there for later.  Perfect!

If you're already a Pinterest junkie then go on ahead and Follow Me

Sunday, January 22, 2012

Live in the moment

Ugh... last night was rough.  Monkey threw up several times an hour from 9:30pm to 4am along with some mild seizures or possibly just myoclonus activity, too hard to distinguish.  There was no fever and no other complaints.  It was so scary though because he wasn't waking himself up!  I had to hold him up each time he vomited so that he wouldn't choke or aspirate.  It's been awhile since we've had a night that bad and I haven't missed them!

Morning came quickly... when I heard that little voice in my ear at 7am I flew upright and just stared.  He asked me "Mama are you ok?".  I almost laughed... am I ok, probably not but he was wide awake and talking about breakfast!  I quickly started prompting him to tell me how he felt... Are you having any pain - no.  Do you remember being sick last night?- Just a little Mama.  Do you feel sick now?- No, why?  Can we eat now Mama?  That's my Monkey!  Today he felt great... and we did it all!  I will not waste our days worrying.  We will take each day moment by moment and adjust accordingly.  I have never been one to wait for the other shoe to drop and I will do no such thing now!  We will live and feel and experience everything now... and then do it again tomorrow.

I know I asked him a million times how he was but he didn't snap at me once.  I am sure he knew I needed his reassurance.  Even though he didn't remember most of what happened last night he can read me so well he certainly knew something was up. 

The Monkey really did fantastic though.  He had been begging me to make pulled pork all weekend so he and the Princess helped me throw that in the crockpot so it would be ready for the games later.  Then we got ready and headed out to an awesome birthday party for a great little friend.  It was a pool party and the kids had a ball!  They swam and swam... it was really perfect.  The water is such great therapy for Monkey and Princess is such a little fish!  The teenager came along too which always makes things extra special for the littles. 

Next we went off to the Providence Bruins game!  I haven't been to a game in years and years... it was so much fun!  I had forgotten how much I liked hockey... I hope we can make it to another game this season.  My cousin was working at the DD Center and was so sweet to the Monkey and his friend.  He brought them pucks and gave the Monkey one of his old jersey's to wear.  He even took him on a little tour.  He was in heaven! 

We ended our day at home... the six of us finally together, watching Kevin and the Monkey's favorite team.  He didn't make it too long into the game but was more than happy and content just to lay on his Daddy and enjoy the moment with him. 

Today was a good day.

An old soul...

I tried to post this last night but Blogger was being difficult and wouldn't let me... sorry 'bout that!

The Monkey had no school yesterday due to a water main break in the building.  That, accompanied with the first real snowfall of the season made for a very happy boy.  He jumped and bounded through the kitchen, round and round the island proclaiming that he couldn't believe it finally snowed and that he had no school!  His second thought... "I feel so bad for my teacher.  I wish she could stay home like me and have a fun day off." he knew the faculty had to report as usual.  That type of response is so typical for my sweet baby, he always thinks of how someone else will feel.  The compassion and empathy he is able to display for others is boundless.  He truly has a heart of gold.

I am not sure where he finds it... all this empathy.  He has had so many struggles in his 7 years and there are many more yet to come.  But it's there, guiding him, surrounding him.  If you are happy he is ecstatic, if you are sad he is heartbroken, if you have been hurt he will protect you.  Now, don't get me wrong... these are not his only heightened emotions, he is not a Saint, if he is angry there will be war, if he is feeling mischievous... watch out!  He just seems to have such an old soul... his perspective and intuition is that of someone that has done this before...

Maybe this is his gift... maybe it's what gets him through and also what helps him fight?  The Monkey has an undetermined Metabolic (possibly a neuromuscular) Disorder.  He has undergone countless tests, screenings, and procedures but no definitive diagnosis has ever been reached.  We have always been able to get by with just treating the symptoms and for the most part I've learned to be ok with that.  He has an amazing team of Doctors that are wonderful to us, they all have developed a keen interest in the Monkey and have always gone above and beyond.  Things are changing now though, So, it's time to start from the beginning.  something is happening, it could be disease progression or it could be his growth putting more strain on his body.  We don't know and no one is ok with not having an answer to this one.  We thought this would happen later, maybe at age 9 or 10 but the Monkey is 7 and it's time now... time to start from the beginning. 

Yesterday and today were perfect days for Monkey (for me too).  No school, SNOW, lots of cooking and baking, tons of games... quality family time and some play time with friends too.  All the while I was watching him, keeping a closer eye on him than usual, especially today.  He had been whiny for a few days, his color was a bit off, and his usually ferocious appetite was very subdued.  These are all signs that something's coming.  Sometimes it's fatigue or a growth spurt, or even the weather, if it happens to be very warm or humid.  Other times it's a cold with mild respiratory complications and sometimes it's much more.  With any of these scenarios Metabolic or Lactic Acidosis is inevitable.

The Monkey started to complain of a mild sore throat earlier this afternoon and I thought oh, this is it, wonder where we'll go from here.  He seemed pretty good though... eating well, great spirits, etc.  I put the kids to bed early and snuggled on the couch with  Kevin.  We had been looking forward to some much need alone time and to finally watch The Hangover II.  Well, we got about 15 minutes in when I heard a noise... I bolted up the stairs and found the Monkey covered in vomiting and still mostly out of it.  I woke him so that I could clear his airway and clean him up... he was so upset, my heart just broke for him.

So, Kevin and I cleaned him and the bed, postponed the movie and our time together for another night and now, I lay here, in bed with my baby snuggled up against my side typing his story... PART of his story.  This... disease.... will not define him, it may have hold of a part of him but that is all....   

Wednesday, January 18, 2012

Mud, mud, every where!

Picking the kids up from school is a whole ordeal in our household.  We have four children, as you already know, 3 of which are in school (3 different schools) plus my 2 daycare babes and more often than not a friend to pick up as well.  Never mind the wrestling and basketball practices and meets/games, the geometry tutoring, occasional detention or class make-up for the Teenager (aka the Politician of the bunch).  So, basically I never know whether I'm coming or going... thankfully I've only messed up once though!

On a typical day, once we reach our last destination and all the pick ups are done, the kids are allowed to storm the playground... they love it and it works out perfectly.  They need the release after a long day of school and look forward to playing with their friends and I need kill some time before what can often be a long and arduous evening... oh, yeah, and I get to see my friends too.  It's a win win!  Due to this routine, rainy slushy muddy days are not our friends and the kids reinforced that yesterday.  Oh my goodness the mess!

I was able to contain their mud magnet abilities for a few minutes but once the Princess did her second graceful, yet accidental, swan dive into some seriously disgusting quick sand type mud all bets were off.  Initially she was horrified... it was cold, wet and completely covered most of one leg and side, that was just the first fall.  By the second her whole backside was covered and the boys were howling!  After some serious warnings, which were completely ignored, the Monkey, the Princess and 2 of their friends were shine deep in it!  The Professor thought better of it and stood off to the side enjoying the antics of the others.  It was as if he was the king and they were the court jester, strictly there for his entertainment, until someone jumped... hard... right into the deepest part of the mud puddle.  The boy, who was trying so hard to stay clean, to stay above the temptation (and grossness), got nailed!  Right in the face.  Oh, it was hysterical.  It quickly turned from us adults yelling at the kids to all of us laughing!

I didn't think it was possible but things managed to go even more downhill from there.  The monkey was so excited he turned to grab his friend and sent him sailing into the "puddle".  Then there was stomping and dancing with lots of slipping and sliding.  At one point none of them could even get out if they wanted to, the mud had sucked their shoes in so tightly.  They had a ball... my only regret, I didn't get any pictures!  

My disaster of a car is actually even worse now... which I never thought possible.  Everything else, from hats down to shoes, including everything in between and underneath, went in the washer, after some serious rinsing in the mop sink, and was as good as new for the next day's adventures.  While sometimes I wish I could command more attention from my children I wouldn't change them for a single second.  I love their excitement, their love of life, and their eagerness to dive into everything with their whole being.  It's contagious and quite possibly the best moments of my life.

Tuesday, January 17, 2012

Just what I needed

I exercised today!  I know for many of you it's a part of your daily life and for others it's more of an occasional affair.  Well for me it's neither.

I use to workout all the time... though it seems like a lifetime ago.  I was in the Army Reserves right after high school and I got more than my fair share of torture there.  After I got back I didn't do much of anything but I was only 19/20.. remember when it didn't matter what you did, you always looked fantastic, but I digress with my wistfulness.  A few years later, when I was in my early 20s, I started working out with my brother in law and a few of his friends.  I loved it!  I was dealing with some really life changing scary things and it was the perfect release, he was also a great teacher and motivator.  I continued to work out for quite awhile, taking breaks here and there but always coming back to it.   After having the Monkey I jumped back in full force and lost all the baby weight, I even looked better/healthier than I had before my pregnancy.  I felt great!

Then I got pregnant with the Princess and everything changed.  Perhaps it was the fatigue and morning sickness on top of having 3 young kiddos already or maybe it wasn't even the pregnancy.  Whatever it was I was spent!  Less than halfway through my pregnancy I was put on modified bed rest... I became the size of a house!  Well, not quite but it was bad!   I didn't care though, I love being pregnant and that was just part of it.  I was also remembering just how easily and quickly the weight came off the first time.  HA!  Those of you with more than one child already know how naive I was... and if it didn't happen to you with baby #2 then just quietly smile and nod.   So... baby #2 (by birth... we'll get into the details of that another time) and 3 terrors at home, along with a nasty New England winter, some questions and uncertainty in the Monkey's development and me being me = Postpartum Depression and Anxiety.  Fun times.  I worked really hard to dig my way out of that, there was too much at stake to give into it.  I am sure it was a combination of many things but exercising certainly helped.  Exercise alone wouldn't have been enough but it was there pulling it's weight in the cocktail of recovery... it helped bring me back to me.

Fast forward to two years after having the Princess... I developed 3 herniated discs.  It was horrible!  The pain was ridiculous!  It took me 2 full years to recover.  Since then I have been petrified of exercising.  Just the sheer thought of moving my body in the wrong way and going back to that pain filled place scares the crap out of me.  That's why today is so ironic...

I had no intention of working out, not a single embryo of thought... till I found myself at Rondeau's Kickboxing in Warwick  (they also have a location in West Warwick) this morning.  I went along with a friend just to check things out, or so I thought.  Other friends' of ours own the gym and another friend was holding her Super Woman class.  Let's just say things didn't unfold the way I had planned... that's how things are suppose to go sometimes though, isn't it?  The most important things seem to happen all on their own with or without our conscience choice.  Sometimes it seems we are guided to just where we need to be. 


I worked out... yup, I exercised and I can still walk!  It was just what I needed.  It helped me get out of my own head and my own way for that matter.  I also think it might help answer my question from yesterday's post...  we shall see!

Monday, January 16, 2012

How do you think effectively?

While sitting on the couch, curled up under a blanket with a hot coffee in my hand I had the privileged of  reading some very insightful comments referencing my last post about Amelia Rivera.  It was such a good moment... The girls were playing so sweetly with their little animals and the boys were having quite the Madden battle on Xbox and I felt... good, worthy.  I stopped for a moment to reflect and realized that I was feeling so fulfilled because I was thinking.  I was feeling intellectually engaged while still being here.. giving my kids everything they needed!  I was using my brain in a way that doesn't happen all too often any more... I then began to feel a bit pathetic.

Don't get me wrong... I have a some really wonderful, very intelligent friends, they are so engaging and self affirming but it always leaves me craving more from them.  It was such an odd realization... I mean we are all thinking, constantly (well, maybe some more than others) but this was different, I wasn't thinking through worry as I have been for years.  This was the higher order thinking that I've so been missing and don't get nearly enough of... maybe I was on to something with this blog.  Still feeling a bit pathetic though... ;)

Don't get me wrong I love being home with the kids, honestly, I would never change a thing, but I use to feel smart.  I knew things right off the top of my head... you know, not things like what to make for dinner or how to sooth a tantruming preschooler.  Now, I find myself coming up with pretty intelligent thoughts and then I seem to struggle through the conversation to find the right words.  I know what I want to say, the thoughts are still there, it's the execution that's lacking.  This is why I've been so reluctant to go back to school... again.  On one hand I am so excited about the prospect of starting something new... something I've wanted, but I'm dreading it all the same.

I fear my brain turned to mush!

Then it dawned on me... why starting the blog seemed to fit... yes, partly because my husband suggested it and I am never one to back down from a challenge (ever) but mostly because I miss thinking.  I am sure that I've learned many things in the past 7.5 years but I've lost any verbal acuity.  Writing is a bit of a struggle too... but that's possibly due to the million interruptions I get during a single paragraph!  Without an effective thought process I find myself struggling in many settings.  I guess the old "use it or lose it" adage works here too.

Check this out...
The benefits of developing thinking ability are manifold. By developing one's thinking skills one can make achievements; can become successful; can shine in social life; can attain emotional, social and economic maturity and so on. By developing one's thinking abilities it is possible to transform one's aggressive tendencies, bad temper and other negative tendencies creatively and constructively. It has been found by Dr.Edward de Bono that when school students were taught to think effectively, their ill-temper and aggressive tendencies reduced significantly. Clinical Psychologists have also found that those who have neuroses are poor thinkers compared to normals. Neurotics scored significantly lower scores in decision making, problem solving and creative thinking. Interestingly, when neurotics were taught to think effectively, they showed a remarkable reduction in their neurosis. 
I don't think I'm aggressive but I can certainly have a bad temper... and the crazy neuroses!  So, I need to start thinking, effectively!  If only it were that easy!  

Please tell me I am not the only one that feels this way sometimes!?!  

Still feeling a bit pathetic but if you know me you know a plan can make just about anything right in my world.




Amelia Rivera

I read a heart wrenching and infuriating story yesterday morning and haven't been able to stop thinking about it.   I have gone back and forth about how, and if I should write about this... it touches several topics close to my heart and it's quite difficult for me to "go there"... but this isn't about me.  This is the story of sweet Amelia Rivera and her amazing family.  They need help and their story needs to be heard.  Things like this cannot continue to happen. 

Please read about the Riveras here and then come on back... 

There are so many things wrong with what is happening to the Rivieras.  I really am not sure where to begin.  I guess I will start with the obvious, the narcissistic transplant doctor who thinks that "mental retardation" is an appropriate term and how he seems to believe he is either a psychic or God.  I thought the deinstitutionalization of intellectually challenged people happened in 1965, please explain to me how this is any different?  Where are the Kennedy's when you need them?!?

How can this "doctor" believe that being intellectually challenged should limit anyone's life... dare I say he speaks as if Amelia is not worth the life saving procedure?  How does a handicap make one's life less valuable?  And to tell a devoted and loving mother that he has "been warned" about her... warned that she would do what... anything to save her daughter?  Fight with every ounce of her being to get what her daughter deserves?  That she won't allow her daughter's dignity to be disparaged?  Or that she just simply won't give up on Amelia? 

Although I do believe this doctor is grossly inappropriate and I would love to place complete blame on him (along with some other painful things) unfortunately it seems I can't.  According to the Transplant Guidelines it appears that hospitals have a bit of leeway when determining their eligibility criteria.  One hospital lists this in their guidelines...

Absolute contraindications or disqualifying conditions for kidney transplant include:  
• Severe mental retardation and/or multiple congenital abnormalities associated with severe limitation (cases to be discussed by the hospital’s bioethics committee)  
  
How should anything other than the standard medical contradictions disqualify anyone from a life saving procedure?  

Ohio State University published a study in 2006 that states-

Individuals with IQs between 50 and 70 were significantly disadvantaged in seeking heart and liver transplants and they were moderately disadvantaged in seeking kidney transplants, while those with lower IQs were even more disadvantaged.
 
It also states-

House and Thompson’s (12) review of the psychiatric aspects of organ transplantation asserted that patients with significant MR are poor candidates for organ transplantation. They did not explain this opinion other than to suggest likely problems with compliance. 

And then the most outraging comment-

Savulescu (13) questioned the public policy of equal access to donor hearts for people with Down syndrome. We should face reality, he urged, quality and length of life and probability of benefit (and cost of treatment) are relevant in determining who should receive treatment [heart transplantation]. Severe disability in some circumstancesshould disqualify a person from access to scarce resources .

Amelia's doctor and her social worker (whom I'd also like to kick in the teeth) at CHOP's (really CHOP's, really?  I expected better from you) seemed to be eluding to the same "concerns".  That because of Amelia's intellectual abilities and her need for constant care that she should not receive a lifesaving procedure.  In my opinion there is no choice... no decision for anybody to make!  We all give our children constant care, granted they are at many different levels and Amelia's would be extremely high, but it is done by us none the less.  It is our job, our duty as parents and for most of us our passion!  It is not for a doctor to tell us that it's not worth it.  No one should have to power to decide that someone's intellectual abilities make them more valuable than anyone else!  When will it be taken a step further?  When will someone be told that because their IQ is "only" 100 a different candidate, who's IQ happens to be 120, will receive the transplant first.  Or perhaps it will effect a child who is awaiting adoption or in foster care with no permanent guardians, after all it's about who will take care of them, right?

Although hospitals try to get away with barbaric discriminating acts such as these there are people fighting for the families.  The Convention on the Rights of Persons with Disabilities has specific rights in place and the refusal of treatment for Amelia is in breach of many.  The CRPD is in place to prevent and remedy offenses such as this and I have no doubt if this is forced to go to court CHOP's will lose.  Even so, the real point is that there shouldn't be a fight in the first place... the articles set forth by the UN through the CRPD are there for a reason for Christ's sake!

Obviously this is outrageous but what can we do to help... in the immediate this is a good start.

follow the above links and sign the petitions!  support the Riveras!

Long term... hug your babies extra tight and teach them.  Teach them that everyone is equal, everyone is valuable, and everyone is different!  No one is "worth" more than another.  People with disabilities are real people with many things to offer.  

Teach them compassion.




Saturday, January 14, 2012

Triskaidekaphobia

So, remember yesterday when I said "The first 2 got ready and for school surprisingly well... makes me wonder what I will have to deal with later since they were so well behaved at 7am.".  Um, yeah... That.  I must say though, it really wasn't anyone's fault but it sure was a hell of a day.  I am now a new believer in the powers of "Friday the 13th".


First off, we couldn't find our kitten Benny for several hours.  He is only 11 weeks old and doesn't ever really leave my side, much less go outside, so this was unsettling.  At least I knew he was in the house... Somewhere.  (A little background... 3 months ago one of our other kittens disappeared, for good, and it was and still is difficult for the kids... and I.  No way was I telling them it happened again.)  Well, after much searching I found Benny in the Monkey's bed all curled up under the covers.  My first thought was, how adorable he looked and then relief from finding him.  It quickly turned to dread when I realized he couldn't walk and was feverish.  He was also in such pain he cried out before my extended hand could even touched him.  I called the vet immediately and, after explaining to 2 different people why we needed to be seen ASAP, I was told Monday was the soonest.  Apparently, that was suppose to be a "favor" since Monday is MLK Day.  Gee, thanks.  We are lucky though, there is another animal hospital very close by and they were so sweet to us.  The veterinarian couldn't figure out exactly what was happening with our poor Benny boy but he was so kind and very encouraging.  After giving Benny a full exam and a shot of antibiotics we left with more meds and plan in place.  
Yesterday was very worrisome for the littles and I... Watching Benny was so sad.  He never left his bed, unless it was in my arms.  He did allow us to hand feed him though, which the Monkey took on as his main duty in life.  If I'm being honest, I really feared he wasn't going to make it through the night.  I worried that the Monkey would take too much of that on himself... He's so empathetic and affected by everything.  Benny did it though!  What a relief!  He's getting stronger... He even got up on his own twice today!  The Monkey and the Princess have been so patient and helpful nursing Benny back to health... I'm so proud of them.  I am so thankful we were forced to find a different veterinarian practice.   Oh, and the vet techs at the new place have called us twice today to check on Benny and have given us terrific advice... Love them!
Incase that wasn't stressful enough for one day the Princess some how banged her head hard enough that she ended up with a mild concussion.  Seriously.  There were 4 other kids in the room and 3 adults upstairs and yet none of us can figure out what in the hell happened!  The Princess just keeps saying... "Mama, I was just sitting there and then my head was hurting so bad and I was crying.".  I cannot believe how quickly she bounced back though.  She went from confused, slurring her speech, and very lethargic to practically normal in an hour and a half.  Kids may just be invincible!
Oh, wait... I almost forgot!  One good thing did happen yesterday.  We were visiting a friend and while there I volunteered to run out and pick up lunch.  Just a few minutes after I pulled away a gust of wind sent their basketball hoop crashing down... Right where my car had been.  Thank goodness for small miracles!
And to think there's 2 more Friday the 13ths this year...

Friday, January 13, 2012

I'm on a diet.


Sshhh... don't tell anyone.  Just kidding.  Well, not really... I have this tendency to not share new endeavors.  It's not that I don't want to talk about it or that I don't trust people it's because I have this ridiculously overwhelming fear of public failure and embarrassment.  The thought of having to explain why I didn't succeed is staggering to me... and there's always those people that have to ask, right?!?

So, more often than not I just won't say anything at all... but it's out there now!  Ugh!  I am off to a decent start though... 4.5 lbs down.  Last fall (2010) I lost about 30 lbs, realistically that was probably too much for me but it's irrelevant now as I did put most of it back on.  I can attribute the backslide to lots of things but the excuses won't make me skinnier or healthier so here we go again...

Really strict diets aren't too hard for me... it goes along with my "all or nothing" thinking.  I completely suck at moderation though... if I like it and it's there well, why wouldn't I eat the whole frickin thing!  Add that to my love of cooking and red wine and... well, hence the diet again!

Off to drink my 500 gallons of water and get the rest of the littles out the door.  The first 2 got ready and to school surprisingly well... makes me wonder what I will have to deal with later since they were so well behaved at 7am!  Happy Friday the 13th...

Thursday, January 12, 2012

Here we go...

I'm sure if you're reading this you probably already know me, maybe Kevin, and possibly our whole brood but if not, I'll fill you in.  I'm Laura, mom to 3 wildly crazy boys, that never ever seem to give me a break, and 1 precociously delightful bossy little (in size only) girl.  We are a blended family of 6 and though there are plenty of struggles the joys truly do outweigh them all... I know, I know, blah blah blah... Life is wonderful, we all love each other, everything's all roses and light.  

It's not.  It's hard as hell. 

Some days I'm not sure how I can get through the next 5 minutes never mind the entire day but when it comes down to it at the end of the day there is always enough smiles, just enough kindness, and plenty of snuggles (even if they only come from the youngest 2 now) that I am able to tuck everyone in and be so thankful for all that we've been blessed with.  So, yeah... I will get all mushy and sappy from time to time, you know, all mom-like... There's your warning.  :)

These are the moments that make everything else melt away...



I've worn may hats through out my adult life but for the past 7.5 years it's been running a small home daycare.  I've been more than happy to have a bit of hand in helping to raise and share in the lives of several other little ones.  Truth be told, I think I would have 10 kids if Kevin didn't need to be in agreement!  Right now we have 2 little girls that are so uniquely their own beginnings that you can't help but enjoy their company.  I'm not sure how much I'll share about them, I feel it's not my story to tell, but it wouldn't feel right to not share their presence in our lives.

While we're on the topic of full disclosure, you should also know that I live in a state of utter and complete "organized" (as my best friend likes to call it) chaos.  It's the only way my ADD brain has ever worked and I am sure my writing reflects my ping pong ball type thoughts.  I can guarantee I will cover tons of topics... Parenting, children, education, health, anxieties and neurosis, cooking, crafts, anything related to shopping,  maybe even a little bit of politics and current events, possibly a flit of firearms talk ;), and a healthy dose of ranting and raving about anything that's pissing me off in the moment.  Don't worry though, I am always right so you can believe every single word I say with no need to ever question a thing... Just ask my husband.  ;)