{{{Erika}}} You're right - it's not fair. I'm sorry you and your family have to go through it.

i understand your fears completely. we have a sedated MRI schedule in 1 week and i am just at a loss. The idea of another surgery may just push me over the edge. My son also has a CHD, truncus arteriosis. Doing great for the moment, but otherwise, i understand and feel your pain. hold on tight.

Go ahead and throw things!

I can't begin to imagine what you are feeling; to say it is unfair doesn't even touch the surface...

Please know I am thinking of you, and I am here if there is ANYTHING you need. BIG, BIG, HUGS.

I started reading your blog for your empowering teaching posts..then you got pregnant, and you were so transparent! It was amazing! And when you found out Sammy had heart issues, I cried..and I kept him in my daily prayers..and here he is, all this time later..a true inspiration! I share your blog with anyone who might be in a similar position..because you, Erika, are a light...an amazing glowing light in this world that is the keeper of a little miracle! I'll continue to keep you and Sammy in my prayers, even though I've never met you (tho maybe someday, you'll come to Jersey and visit Christine, Chris, and little Zachary and then I'll convince Xine that it's time for a party ;) ) I'm sure everyone else who got sucked in by your compassion always have Sammy in their prayers as well!!

i agree with everyone, what is happening to your beautiful little boy is really, really unfair. your courage and soul are an ongoing inspiration to me.

you are totally strong enough for this, but it really, really sucks that you have to be.

I hate the effing overwrought mother on that commercial too.

Erika,

You have every right and its normal to feel all those emotions. If you did not I would be very worried about you. The desire to just speed past and be over yet the worry so the desire to just stop time and focus on him now. It is exhausting to say the least.

Sammy is an amazing little boy. He has faced life with great joy and strength and that is also because his Mommy and Daddy have shown him great love and strength.

Our prayers are with you.

Terri

He is amazing and truly a blessing, but I really cannot imagine going through what you guys have. You seem to handle it with such grace and I am sure he draws strength from you. You have tons of wonderful family and friends behind you, but I know it doesn't take away how alone you must feel sometimes. Rant and rave all you like. It isn't fair and I hate it for you. I'm really not saying much. But I do care.

I just read a new study done on CHD's from AHA back in Jan. that say's it's now 1 out of 85 babies that are born with a CHD. Why? What are they doing for research to find ways to change this? I'm determined to raise awareness and think you do an awesome job of this here. Praying for Sammy and all the CHD families.

Its not fair and I would certainly feel the way you do if I were in the situation. I keep your family in my prayers everyday because thats the only thing I can do.

Not quiet a live in the moment thing, so don't hate me, but have you read anything about heart babies that are now all grown up? Teens? Maried? If you look for the downside in things, you're going to find it. Likewise, if you look for the positives, you'll find them, too. I know two heart kids in their teens now, you see. My perception is drastically different because I've had a positive exposure to it.

Also, I wouldn't always hold back in writing if I were you. It's the downs as much as the ups, the transparency Caroline wrote about above, that keeps me (and others) reading years later. It's real and it's raw and has more of an awareness spreading effect than you know.

I learned about the at risk teen center issues through you and Alisa. And since Sammy, I've been trying to pitch a twist on the Valentine's day stories at work. (I'm in journalism.) They've done the anti-Valentines, the age/race/culture different couples. I want to see a heart story now. Your first V-Day post with Sammy triggered that.

In fact, I printed it and posted it on our wall of ideas here at work, a year and a half ago now.

Hang in there!

I was looking back over some of my older blog posts and found a comment from you. Funny enough, the comment was on a post I did about feeling angry and sad. So I just wanted to let you know that you are not alone. I wish I had the magic words to say to make you feel better, but I have been there too and I know there's nothing to say. Sometimes for me it helps to know that there are other heart moms out there who do get it.

I'm so right there with you. Doom and gloom. Can't shake it!!!

It's so much easier to live in the moment when that last surgery isn't right.there.over.your.shoulder. You can run but you can't hide from it. It's NEXT F-ING YEAR.

OK - I'm not helping am I? LOL

I'm in that same boat with the same dixie cup trying to bail water out of our ship - because if we could just get it moving, we can avoid reality and the Fontan. But ... our Dixie cup isn't going to make much difference so I guess it's time to put on our life jackets and hold on to each other so we can get through the rough spots together.

It sucks. It really truly SUCKS. These kids are amazing. True miracles and it's not so much "why me" but "why them?"

I'm handing you your life jacket and it's that ugly orange color. While it's ugly - they tell me those are the best for surviving (vs the fancy ones that are blue and don't show up in the ocean). So let's put on our life jackets and strap in for the ride. I promise to be there for you because I know you'll be there for me.

Lots of hugs and love,

Tricia

You are so right...
You always write just what i am thinking and feeling. We must be stuck in the same place....
I am here, even if it is to cry together, laugh or bitch!!!!
You are not alone, even though it does fell like that most of the time.....
I am sending good vibes your way!

D.

If you didn't have days like this, I would seriously worry about you. God, how else are you SUPPOSED to feel? You know, I never read a heart blog until you shared Sammy's diagnosis-and then I started reading, and I haven't stopped. It's raw and it's scary and you can't get away from it, because it's YOUR reality. You can't simply shut off the computer and not think about it like most people can. Because it's there for you every day.

I can only imagine the dilemma...being drawn to talking to other heart moms because they GET it in a way the rest of us can't...and then wanting to stay away from it because it's too HARD to read.

I think you just have to feel it-when you're up, you're up...and when it hits, let it hit. Accept it...this is your way of dealing...

Your optimism has always amazed me...but you're allowed to be afraid, Erika.

Screw the living in the moment theory-and do what you need to do...get it out when you need to, as often as you need to.

I swear, you are one of the strongest people I know. It's ok to let go of that once in a while.

And remember...I can recall all your silly phobias from when you lived alone when you moved near me...so I know you're scared of some pretty silly things (or at least you used to be, lol)...and you're still one of the strongest people I know.

I can so relate to the feelings you so eloquently put into words. Really, Erika, I can. And with that, I know that there is absolutely nothing I can say to make this time easier on you. But I do want to let you know you're not alone. You think I can sit here now and read carepages and be OK with it? Not so much, yet. I used to be able to. Then I had to stop reading altogther and then felt like I was missing out on being a part of what was so much of my life. Now I'm back to reading, again, wondering, myself if I need to stop. It's such a catch 22 it's not even funny!

He's your CHILD, your heart's desire, your precious Sammy...and he is so loved. You are a wonderful mom and you will get through this. You will. And you have so many people who will be loving you through it, as well. Hold on to that.

I love you!
Shari (wife to Bill and mommy to 3 fabulously wonderful boys...Michael (9), Matthew (5), and Marcus (3, HLHS, carepage: MyheartbeatsforMarcus)

I would be shocked if you DIDN'T feel this way. I think that writing it out is helpful and don't hold it all in. Do whatever it is that you need to do to deal with these emotions (within reason, of course :-) ). It totally sucks and you shouldn't have to deal with it. However, you are doing a fabulous job with Sammy. You are letting him be a "normal" toddler. You let him run and jump and paint and swim and play music and dance. He is not living in a bubble and that is the best thing for him, even if it makes YOUR heart skip a beat every now and again. You are in my thought for a healthy future.

Just climbing out of the woodwork to echo the words of support, good vibes, positive energy, and whatnot. I can't begin to feel or imagine what it's like, but I've been a reader since long before Sammy was a glint in Jay's eye (is that silly to say? Is that something only someone my parents' age is supposed to write? Ah well... I'm a geek, afterall!) You've become part of my "virtual family", and I've prayed for you all many times, and will continue to do -- as much for the wonderful times as for the why-the-h*ll times.

An early commenter here nailed it on the head -- what drew me to you was your amazing lack of pretense. I actually went back after I became pregnant and re-read your posts about depression and fear and what *isn't* true about pregnancy (where's my pregnant glow?!) and it really helped me through my own journey.

Without sounding cheesy or stalker-ish, I love your family and hold you, Sammy and Jay in my thoughts...probably even more now that my daughter is here and I truly realize how precious and amazing she is every hour of every day (even when she's ripping my glasses off my face or emitting some foul odor or substance I never before imagined existed outside of a toxic waste dump.)

Much love and good vibes, to you, the li'l monkey, Jay and your extended family.