Posts tagged ‘life ‘




Update


Sometimes I forget that there are people that read my blog that I am not friends with on facebook.  And I forget that I should update here once in a while, too.

We went to the cardiologist’s on September 26th.  Everything looked fine.  Sating at 93%, we believe the fenestration (hole) from the Fontan has closed.  (Yay!!)  But, they still want to do a catheterization in the spring.  This is the FIRST time I have ever agreed with the Doc when he said, “See you in 6 months!”  (I usually protest and make up reasons why we should see him again in 3 or 4 months.)  His new thing, (ever since I KNEW something was wrong after her 2nd surgery, and she ended up needing the emergency, LVOTT procedure) is “Give me two valid reasons.”  Last time I said 4 months and my two reasons were: “Because you just said you want to keep a close eye on her fenestration due to her stroke and she has a tendency to pull something funky after everything goes so well.”  He agreed.  This past visit I asked if we could stop her Plavix.  “Give me two valid reasons why I should consider this.”  1.)  It’s a pain in the butt to travel with, since it has to be refrigerated and 2.)  It’s such a new medication that there is really no long-term proof of whether it is good (or safe) to be used with a regular aspirin regimen.  He rolled his eyes at my first reason, but agreed with my second, and thus NO MORE PLAVIX!!!  Back to 2 medications a day!

School:  I was inducted into Phi Theta Kappa (National Honor Society for two year colleges.)  I’m very proud.  I have a 3.8 GPA, and I have worked, raised a special needs child, and run a household all while attaining that average.  I FINALLY got accepted into the Nursing Program for next fall.  (2012.)  That’s when I actually get to take nursing classes and go to clinical!  This semester is really boring, with Health Science Seminar (which I should have taken earlier because it is to help you figure out where you want to go with your career and give you study tips for Anatomy and Physiology, when I have already taken both of them and got 4.0’s in both.

Ben just applied to school though, and is going for machining.  I think that is a wonderful, dependable career that he will really like.  I’m proud of him.

The only good thing about this semester and psychology class is that my teacher is making us read “Tuesdays with Morrie.”  I read this book when I was in 7th or 8th grade, but I’m so glad to be re-reading it now.  It’s one of those books that you should re-read throughout life, because each time you’re going to get something new out of it.  It’s one of those books that truly inspire you, and if you’re a motivated person, it will actually change your life.

Legislation:  As you may know, I was the one who started the Pulse Oximetry efforts in Maine.  (Each state has an advocacy group that is working on making Pulse Ox mandatory on newborns.)  We have 15 days until the Legislative Council meets and decides if it will be voted on in the January 2012 session.  I’m pretty nervous.  I have put a lot of effort into this.  I have written OpEds, numerous emails, spent many hours on the phone, and most recently  I did a radio interview.  (I believe we are going to do a news segment about it soon, too!!)  It’s all very, very, exciting but very, very exhausting.  It’s a full time job in itself.

And after writing all that I just did, I’d like to state that I am very proud of myself.  Although my life is not perfect, and there are many things that I want but just can’t quite reach, for the most part I am very pleased with and very content about where I am in life.  For just having turned 22, I’ve accomplished quite a bit.

6 comments October 15, 2011

You live a crazy life


This past year, close to Christmas, I made the “mistake” of taking a “friend” along with me to get some things that I would be dropping at the Ronald McDonald House.  (I warn you, I will be using “quotations” a LOT during this post as there are a lot of words I am using LOOSELY.  I say “mistake” because it wasn’t a mistake at first, but I soon realized it really was.  And I say “friend” because as this tale unfolds you will realize she’s not a friend, and she never really had been.)  Wal-Mart was busy and I was whipping my cart down the aisles ready to be anywhere but there.  I picked up some Tupperware, a card, and then went to pick out some sprinkles and frosting for some cookies. 

Said “friend” was on the phone the whole time we were there.  Never mind the fact that I hadn’t seen her in months, but I wanted her help and her opinions.  She finally hung up and I was explaining that I needed a few more boxes of spaghetti, another jar of sauce and then I needed to pick out stuff so that the kids could decorate the cookies.  (I was dropping off cookies at RMH and I wanted to bring the things to decorate them so if there were older siblings at the house they would have something fun to do.)  And as I’m explaining all of this, and my schedule for the next week, “friend” says, “You live a crazy life.”

It probably shouldn’t have hit me as deeply as it did but, it left some questions in my mind.  “My life is crazy because I bring my child with a terminal illness to the doctors?” (I mean, yeah, we go a lot but they are all necessary appointments.)  “My life is crazy because I’VE been in the Ronald McDonald House and know what would have helped me, so I’m crazy to give back to them what I think could help someone else?”  “My life is crazy because this year I have money to help someone else and I WANT to?”

No.  Your life is crazy.  (Let’s not talk about the fact that you don’t care about humanity unless they are directly affecting you, or the fact that the most serious thing you’ve ever had to deal with in your life is a bad break up, orrrrr the fact that you could never be bothered to take a moment out of your drama filled life to give back.) 

That is my normal.  The Dr’s appointments, (even around Christmas!) talking about people I’ve met online that have been where I am in my life, and giving back whenever I can.  Reaching out because there is a possibility that I might touch someone else’s heart when I do.  Busy, yes.  Crazy?  Absolutely not. 

I’m sure it’s hard for people to understand why I talk so much about Ava and her CHD and about the wonderful people I’ve met online and all of their sweet babies.  I talk so maybe you can TRY to understand, just a little.  I talk so you’re aware.  I talk about the people I meet because they mean a lot to me.  I follow along with their journeys.  They let me into their life, a VERY personal aspect of their life, and I treasure that.  I love that these people have given me a chance to watch them, and their children grow.  I love to watch the awareness they raise, and the next steps in their lives.  Living day to day with a kid with a Congenital Heart Defect IS hard, but there is a lot about it that I LOVE.  I love that I have opened my eyes to the needs of the world around me.  I love so many people I have met along the way in our journey.  I love the energy I have for life now.  I do not live a “crazy life” I simply live a more enriched life now that Ava is in it.

2 comments February 7, 2011

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness Congenital Heart Defects Life with a CHD Tricuspid Atresia Uncategorized

Life with a CHD

beautiful daughter cardiologist visit CHD CHD Congenital Heart Defect Congenital Heart Defect Awareness Congenital Heart Defects Congenital Heart Defect surgery fear anxiety fear life strong Fontan Fontan Surgery Fontan Surgery CHD found out diagnosis tricuspid atresia problem surgery Giving back heart defect surgery Heart kid life life CHD life heart tears Life with a CHD life with a CHD fear life surgery scared worried life with a chd life struggles life with CHD Living with CHD Living with Tricuspid Atresia PICU
 
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