Thursday, October 11, 2012

The secret strong Mom's don't tell you!

I'm going to let you in on a little secret............. Shhhhh don't tell anyone...............

Even strong mom's get scared! Actually probably more, it's that fear that drives their strength. But, every once and a while that fear creeps up not as strength but sometimes in other forms like sadness, or resentment. 

For every 100th day that I wake up and look at my little guy and think, "God, you're so perfect you're going to have such a great life", there's a day where I go into another room where ever it is in the shower or late at night and think "This isn't fair!"

When I found out I was pregnant I kept thinking "I hope it's a boy so he can play pee wee football and Bella can be a pee wee cheerleader" I know this is a silly little thing but what makes me happy all fall/winter is weekend football and I love it in every form from high school to NFL. Even to the point that we're hoping to reach out to the Western MA Warrior's semi-pro football team when we start fundraising for out Rock N Roll for with Team Warrior Eddie! I think my little man is such a warrior! By definition {a person who shows or has shown great vigor, courage, or aggressiveness}.  This, this is the strong mommy talking.

The other day I overheard a couple of ladies talking about their sons playing pee-wee football. For some reason it hit me so hard. I get that my little guy is going to do so many amazing things. Things I can't even imagine right now but for some reason that little thing, the idea that I won't get to watch him run around in those adorable little football uniforms and me getting crazy aggressive and nuts watching him. (Yes, I am that crazy person while watching a football game) That equaled an in the shower cry, then I see him bright and early in the morning holding that little monkey giving it kisses and then passing it to my face for me to kiss it and then burying his face in mine to be lovey. That's when I realize that this kid is so cuddly and lovey, let's be real, he's no football player. He may be a warrior but I can't see him going after and tackling another kid. I see him nicely asking for the football. That's when I realized that no matter what, my kids are going to pave their own way and not the one that I made up for them. Kind of like how Bella is all about pink and princesses and Barbies (none of the things I know anything about) not the tomboy I envisioned. These are not disappointments just a new scenic route. That's the whole point of having kids right, to see them develop themselves and find what they love and do great or not so great! 

So get up strong mommies and no more pity party! Get over your "plan" for them and let them make their own "plan"! 

So, go Patriot's! go put your kids in some crazy fan clothes or whatever you love because one day they'll be a Giant's fan and you'll think what happened to my kid? (Just ask my family, all Red Sox fans and I'm a Yankee fan!)

An old photo, but one of my favs!

Monday, October 1, 2012

One year!

October is Spina Bifida Awareness Month and it reminded me that it's been almost exactly one year since we got the SB diagnosis. Wow, I can't believe how far we've come. I remember not sleeping the night before the appointment because we were so excited to find out if it was a boy or a girl.  I remember Eddie's literally jumping out of the chair in the ultrasound room when she said it was a boy. I remember how the air in the room got so thick right after that when the laughing and joking stopped and the tech got very quiet. I remember the words I'm so sorry said over and over again to us in that room without any other explanation.  I remember being ushered into the doctors office by all of these people who looked like they were about to tell me my baby had died. I remember balling in the doctors office waiting for someone to come tell us what was going on. I remember hearing words like "birth defect" and "death" and "termination". What I don't remember of that first appointment was anything positive. Maybe there was but as far as I remember it was a death sentence or a child that was a vegetable.  Don't get me wrong, I have an amazing OB but there just isn't enough awareness about SB even in the medical field. After we met with the MFM specialists things were much more positive but even throughout this journey even now, we heard and still hear the "I'm sorry" line.  I'm not!

My little man is my warrior not doubt, he has beaten the odds given to him in the beginning.  Barreling through surgeries like a super hero!  He is also my little miracle, but so is my daughter.  I don't see him as a miracle because he beat those odd to get here or because he has SB, I see him as one because any mother will tell you that bringing a baby into this world is a miracle! The fact that you grow something inside of you and can love it as much as you do is a miracle! I see Bella as much as a miracle as I do Eddie.  I even see it in my friends eyes when they look at their child. Their miracle is just like mine! It's tough to see others look at him and say "Wow, what a miracle!" and not mean this baby like all others is a miracle. I see him sitting next to his little "bestie" and to me their just two best friends for life. Who can celebrate their birthdays together one day! 

Sometimes it's tough to hear people introduce him and follow that up with the SB conversation. I think inside, "why do we always have to open with, he has Spina Bifida?" I understand though that every conversation is a chance to erase the stigma of SB and bring awareness. I heard about a recent episode of Sons of Anarchy where someone was introduced to have had SB and it was because their mother did a lot of drugs.  Fact #1 That's not how you get SB. I did not take drugs, I was not on antidepressants even. We just won the SB lottery so to say. Trust me in the beginning I spent a lot of time trying to figure out the magic formula that made SB, if scientists can't figure it out I'm not going to be able to.  Best we can figure is that my body doesn't absorb folic acid properly. So folks, take you folic acid!!

This month I'll be trying to post as many links to for SB awareness and I hope that you share this blog with others this month so we can spread it! Just like any cause, the more awareness the more we can understand and maybe one day find out and maybe stop  this birth defect from happening!

First link here;

What is Spina Bifida -

Folic Acid -