Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Thursday, May 17, 2012


The I LOVE XAVIER'S HEART bracelets have been designed and are on there way.  Nate and I paid up front for lots and lots of them.  If you would like one...please email me at ...we have both adult and youth sizes.  They are $4.00 a piece which includes shipping.  I will ship to anyone, anywhere!!  The proceeds will go toward Xavier's insurance premiums and co-pays.  They are black with red letters that say "I LOVE XAVIER'S HEART"  Please wear your bracelet with pride and share Xavier's story to anyone who asks what your bracelet means...Spread Awareness about HLHS and show our little dude support!!  Thank you all so much for your well wishes and your support!!!  HEART HUGS FROM THE ROSS FAMILY!!!

Tuesday, May 15, 2012


MOTHER'S DAY!!!  I never dared to dream that we would be here...NEVER.  I had hope..but I never let myself even imagine that we would make it this far.  Last Mother's Day I was VERY pregnant and very scared about what the future held.  I often prayed and just asked for one hour to hold my baby boy and tell him how much he was I loved him long before I even knew that he was a part of me.  I wanted to tell him how hard we fought..and that I would see him again someday...That hour came and went and I began to pray for a week, two weeks, a  month, another month...and here we are..days away from a year.  And he is going strong.  I take NONE of the credit.  Xavier was not willing to give into this disease and God has a plan for him.  And  I am so blessed to be a part of this journey.  What a blessing it is to be his mother...years and years of living...of experienceing different things...and it took five seconds of holding this tiny little baby on my chest to figure it out...the meaning of life...LOVE, FAITH, LAUGHTER AND FIGHT...that is all you need.   Every day is a celebration for us.  I don't need a day like Mother's Day...for me everyday is HAPPY TO BE YOUR MOTHER DAY!!

On a totally different note, I have been working on a little fundraiser and a way for people to show their support for Xavier.  I am working on wristbands.  They will be black with red letters and will say "I LOVE XAVIER'S HEART".  They will be for sale through the blog and facebook...or you can just call me up.  I am trying to get a feel for how many to if you think that you would like to order one ($4.00) please message me here, on facebook or email me (  I will mail them to you or if you are local, I will drop them off.  I will also have some in PA and my mother's house and they can be bought from her.  All the proceeds will go to help us with our insurance premium and co pays.  This is a great way to celebrate Xavier and spread awareness for know that someone is going to ask you what your wristband means!!  Once I get them ordered, I will post a picture so you can check them out!!!  SUCH FUN!!!

Saturday, May 5, 2012

A soft place to fall...

Life never world crashed around me, but life never stopped.  I took a week off of work, but lesson plans still needed to be written, loose ends needed to be tied.  Nate had clients that still had deadline, gigs still needed to be played..Life never stopped.  Bills needed to be paid...Life never stopped.  I struggled with how to tell my family, my friends, my co-workers.  Would they think that I had done something wrong, would they wonder what horrible thing I did in  my past that would result in my being "punished" this way.  We knew NOTHING about I was pretty sure that my inner circle would also know NOTHING!!  I hit my knees and just starting begging, pleading with God to please change this path..didn't he know that I was not going to be able to do this...I was not equipped to deal.  This kind of thing was not meant for me.  I was was too weak.  I spent a week in bed...crying, praying, holding onto Nate like he was a raft in the middle of the ocean.  I look back at that time now and selfish of me.  He never had the opportunity to break because he was too busy picking up my pieces.  He was my soft place to fall....

We finally started educating ourselves, excepted that this was our reality and to be honest we really pulled it together.  Our families rallied around us and held us together.  Our friends kept our spirits up.  I was determined not to have a baby shower, but my best friend convinced me that I had to be positive and not give up on my baby.  I don't think she knows, even now, how much I needed that kick in the butt.  We had a plan for our son, he had a name, he had a crib and freshly painted walls.  He had all the essential and not so essential things that a newborn needs.  We had a great team of doctors.  We had a amazing hospital.  Xavier was growing and his heart was holding stable.  CHOP   and our local cardiologist kept a close eye on all of us.  We were being taken care of on all fronts.  All of these people were my soft place to fall....

Xavier has had a pretty awesome year (almost).  He has done pretty well.  I take comfort in knowing that his year was harder on all of us then him.  I still lose my breath when I think about how fast he rebounded.  I am often caught off guard by how amazing he is doing.  To look at him, he looks happy and healthy.  And I guess in the world of CHD he is both.  But no matter what, he will always have half a heart...nothing will change that.  He will always need extra care.  I will always stand at the edge, just waiting to spring into action.  But I am comfortable with that.  Nate and I have, for the most part, learned to be heart parents.  Our families have learned how to be heart families...I have lost some things on this journey...mainly friends.  It is just not the same.  I can't leave Xavier with a babysitter, I can't send him to day care.  I really only feel comfortable leaving him with our parents...and they are all states away (PA , FL, RI).  I am sure it is difficult to be my friend now.  I am sure that some of my friends can't handle the thought that we could lose X.  Why get close to him if something horrible like that could happen.  I am at the age now when my friends are really starting to build their lives...getting married, buying houses, having their own children...I even think that maybe seeing me, reminds them that bad things could happen to them too...I use to rely on Nate to be my friend and he will always be my best friend, but he needs space and time for himself.  He can not always be entertaining would be easy to become depressed and lonely.  BUT....I am not.  In fact I feel very fulfilled.  I have the honor of being a part of an amazing community of mothers.  Mothers who know exactly how I feel.  Mothers who can offer advice besides "Oh he is just being a baby".  Mothers who laugh with me and cry with me.  Some who I get to see, some who I talk to on the phone, some who I just know from the internet...but they support me, love me, pray for me, comfort me and give me the will to keep going.  Who remind me to not sweat the small stuff.  They snap me back into reality and help me realize what is important.  They share their pain and struggles with me.  They are my soft place to fall...and I just wanted you all to know...Nate, my mommy, my daddy, my in laws, my family, my friends and my heart community how much you all mean to me...thank you all for softening the fall!!

 Growing up so fast...
 Mom..what are you doing??
 Hey..this is kinda fun!
 Is that dog TALKING???
 My reason!!
Our family...on our visit to MA