Roller Coaster Life

Okay, I am trying so very hard to be positive and happy all the time with respect to Micah and his health...as a matter of fact, for a very short few days, my only concerns about his health had to do with whether he was going to pull that darn button out of his tummy.

But the craziness that is Micah's heart has started in again, and I feel almost betrayed by it. I have always been told that Micah's heart is in good shape, which I know in comparison to many other hearts, his is...but why does his heart go into heart failure so fast? Why do I still have to sit and watch how fast he is breathing, how sweaty he gets and how puffy his eyes look to me? I know that he will forever be a "heart baby" in my eyes, but why can't I just see it as something about him. I am not wanting his health to define him...he is such a special little boy...so curious, full of life, excited, energetic and smart...but all this health crap just keeps getting in his way.

I am very scared...but the problem is...I do not know what to be scared of. Like I said, I have always been told that this heart will last him his lifetime...but how long is his lifetime going to be? I know that is a question that none of us can answer, as there are buses out there that hit people, planes that crash and wars that kill millions of people...but I just want to know that my precious, sweet, charming little boy is going to beat his heart problems.

I guess that is the main thing going on right now...I feel like I truly am on a roller coaster since one minute I am fine and the next I am crawled up on the floor crying like a baby. I just want to be able to drift through life and enjoy every single minute that I am given with my three precious children, but all I seem to find myself being is mean, tired and sad. So, hopefully, now that I have gotten this out of my system, I can go and have a beautiful day.

The saga continues

If you have not read the first email from my sister, please do that first...then this one:
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Ok, so maybe I didn't mean everything in the last email. Sending emails like that is how wars get started. I was upset and worried and did not follow Dad's cardinal rule, of waiting at least 24 hours. I am upset that I didn't know what was going on and it, well frankly, kinda pissed me off, as I love all three kids very much.

I was just disappointed and hurt that you didn't think enough of your me to let me know.

I also understand that this is not about me, but about the Micah so I need to let that go.

So that's all.

By the way, J--- went to opening day for the D-backs last night and went got some things for kids. I am sending the box, but J--- was the one who got the the gifts. He wanted to send them something.

That's all. Can you please keep me posted?
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So much drama....I am just too tired for this...I am getting too old.

Sisterly love!

Is it any wonder that I do not have a closer relationship to my sister...here is the email that I get from her the day before my child goes into surgery....isn't this just wonderful!


Samantha,

This will be the last correspondence that I plan on having with you, unless it is in regards to our parents. I just wanted to let you know that I think you are a very cold and mean person. It is unacceptable that writing a blog on line is an acceptable form of communication with your sister. I don’t read your blog every time there is an update, as a normal kind, loving sister would call if there was a family health issue or concern.

I did not know that your son was having surgery tomorrow, as you didn’t care enough about your own sister to call and tell me. I have a hard time believing that you didn’t have time, as you obsessively write updates on your blog. Please don’t insult my intelligence with statements like you didn’t have time, because anyone who can write novels on line has time to call their sister. That is if they care about their sister, which is clear you do not.

I am no longer a part of your life or your children’s lives. I guess you got what you have always wanted Samantha…to get rid me. I hope you’re satisfied now. I would have thought that as a mother with three children you would appreciate having a sister, but apparently it only made you realize how much you hate having a sister.

You have hurt me for the last time; I have no more emotion or tears for you.

Internet quizzes!

Okay...my friend Kellie got me going on these things...I must say that most of this stuff is true...hmmm...

What Your Little Black Dress Says About You

You are lively and outgoing. You are naturally friendly. You enjoy meeting new people and making new connections. Your style is whimsical and unique. You're good at putting together interesting outfits. If you were a shoe, you would be: High heeled boots

The Little Black Dress Test

You've Changed 44% in 10 Years

You've done a good job changing with the times, but deep down, you're still the same person. You're clothes, job, and friends may have changed some - but it hasn't changed you.

How Much Have You Changed in 10 Years?

You Have Many Alpha Tendencies

You're not a total alpha female, but you certainly know how to - and like to - get your way. You're forceful without being intimidating. You're confident without being vain. A perfect mix.

Are You an Alpha Female?

The Part of You That No One Sees

You are powerful, passionate, and dominant. You have a vision of how things should be, and you do your best to make things happen. People rely on you for your strength. You are a rock to many. Underneath it all, you aren't so sure about your passions. So many ideas spark your interest, it is hard for you to get behind a select few. However, you see indecision as a sign of weakness. So you pursue your goals full force - no matter how foolish they turn out to be.

What's the Part of You That No One Sees?

You Are a Boston Creme Donut

You have a tough exterior. No one wants to mess with you. But on the inside, you're a total pushover and completely soft. You're a traditionalist, and you don't change easily. You're likely to eat the same doughnut every morning, and pout if it's sold out.

What Donut Are You?

You Are 56% Lady

You're part lady, part modern woman. Etiquette is important to you, but you brush aside rules that are outdated or silly.

Are You A Lady?

What Your Sleeping Position Says

You are calm and rational person with a good deal of balance in your life. Friends consider you to be kind, caring, and truly loyal. You are easy going and trusting. However, you are too sensible to fall for mind games. Open to the world, you are not afraid to be yourself. If you don't get enough sleep, you are: Able to cope It's hard to sleep next to you because: You're a bed hog

What Does Your Sleeping Position Say About You?

You Would Choose Love

Money may buy a little happiness, but not the happiness of true love. You rather have a true soulmate than a private jet. And while many people may claim they would choose love too... You're one of the few who would really do it.

Would You Choose Love or Money?

You Are a Rainbow

Breathtaking and rare You are totally enchanting and intriguing But you usually don't stick around long! You are best known for: your beauty Your dominant state: seducing

What Type of Weather Are You?

Let the worrying begin

Here I go again with my major worries and fears, and again, they are for good reasons, but there are others with so many more serious issues (like little Eli who is going to have open heart surgery really soon). I am so afraid of this whole g-button thing. I do not want Micah to have to go through anymore surgery, but here we are. I have the confidence in this being the right thing to do, especially since Micah has been about the same weight for the last year! That is just disgusting to me. I just looked back in his journal and at his 9 month appointment he was 17.5 lbs and in the 10th percentile...now he is 18.5 lbs and below the chart. So, I know that this is the right thing to do, I just need to explain that to my head and my heart...I don't want this. I am one big disaster...that is about all I can say.

I want out

I want out of this heart world. I am exhausted. I find myself saying how unfair this is and I don't even have as sick of a baby as so many others out there. I feel guilty that I am being this way...look at how lucky I am. I have three beautiful children...the sick one is still doing terrific in the eyes of his cardiologist, so why do I fear for his life every single day? Why do I wonder if he is going to be taken from me way too soon? I don't fear this with the older two...maybe I should? I don't know. I worry...I always have worried, but not like this. I think that as I am approaching the two year mark of living this life of constant worry, I am finding myself as a person I never expected to know. Why have I learned all this medical crap? I wanted to be a doctor a long, long time ago, but even as late as in high school, the most medical I ever wanted was psychiatry. As much as I admire and respect all the other heart families I have met...I wish I could turn back time and never have entered this world. Why did I take that damn medicine when I knew in my heart I was pregnant? I know, it is not rational that I did this to him, but what if I did? What if I have single handedly destroyed this beautiful, lovable, almost perfect little person who struggles every single day to gain weight and who has had to endure more procedures and surgeries than his own mother and father combined? I want to not be a heart mom anymore. I want to return to my life of not even knowing that there were pediatric cardiologists, pediatric GI docs, pulmonologists, urologists, genetics doctors and so many more in the world...to a day when I did not even know that there were such things as feeding tubes, nebulizers and RSV. I want to return to the life where I had never heard of three babies dying within one month of each other and finding myself crying over them, even though I had only met one in person. I want to return to my last pregnancy and be able to enjoy it instead of worry and cry constantly not knowing if he was going to be born alive, or if that beautiful boy would not be strong enough to fight. I look at him (and the other two wonders in my life) and I am so thankful...but do I have to be thankful for the heart defect? I really don't think I do have to be thankful for it. I also do not think that I am strong enough to pull myself through this. I look at myself in the mirror and I no longer see happiness...I see a scared woman who is always angry and sad. I want to be happy and I want to see all of my babies thrive and be successful. That was my every intention in this motherhood thing, and now, I do not know if I did them any justice.

Selfish?

Okay, I am going to be selfish yet again and complain just a bit. I am so tired of people expecting everything from me and then just "taking on" the good things that I have found and cherish.

I know that this does not make tons of sense, but there is a friend that I have that seems to want to take, take, take and can do nothing for herself...literally...a totally dependent person who cannot take a stand on anything. Anyway, I in no way "own" the friends that I have made online...and I have found all these people from others who are going through similar things...but when someone just "latches on" to people so fast, it is irritating to me.

Anyway, I know that this is all irrational, childlike and crazy, but I have just had enough! The people that I follow tend to have similar situations as I do (right heart issues, heart failure, failure to thrive/eat, etc)...there are a bunch that have totally different situations, but I enjoy their blogs and their kids anyway. I just don't feel like someone can sit and give all this "insight" to someone when they have absolutely no idea what they are talking about. It is all scary and everything, but until you have walked the path for more than 2 weeks, don't pretend to be an expert. I know that facing any kind of heart problems are scary and emotional, but when your child is the picture of health outside of seeing the cardiologist every 6 months, on no medicine, eating and perfectly healthy in every single other way...you just don't get it.

People who have lived a small portion of this hell and their child was lucky enough to be considered "fixed"...I have no problem with either...especially when they say, "I don't understand what such and such is like, but I am here for you". That is not what I am talking about.

The person I am speaking about does not read this, so if you are reading, you are not this person. I am sorry, I just keep holding on to this and needed to release it even further. One of you have listened to me rant about this many times on the phone, but I just can't seem to get it out enough...it is such a toxic thing for me...as are a few other things that I will be writing about soon as well.

Thanks for letting me vent...please, if I have offended you, I have not meant to...this is truly about one person who I am really struggling with emotionally right now, and like I said, this person is not reading this.