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.

-Buddha



Wednesday, April 18, 2012

Well hello there NORMAL..nice to see you again!



It use to happen a few times a day...Slowly it was only happening once day.  Until I could go weeks without it happening.  It has been since Christmas...so now it has been months.  Then yesterday afternoon, while I was alone in the car driving to the gym, it happened.  I had a full blown emotional meltdown.  Thank goodness the gym is only 5 minutes away.  I just sat in the parking lot, struggling to breath and crying that a crazy person.  Usually something triggers it.  A huge milestone that Xavier has reached, a family get together that we never knew would be possible, finding out about a warrior who lost their fight, finding out from another heart mom that their child got a great report at the doctor.  This time, it was the overwhelming feeling that our lives were...wait for it....NORMAL.  I admit that it may not be normal in the conventional way, but it feel pretty damn normal to me.  Even the Lovenox shots have become very routine.  Xavier has even started to pinch his legs like I do right before a shot.  We only see the cardiologist once a month, now that RSV season is over, we only go to the doctor for well visits.  I only take sats once a week.  He is only on two meds.  He eats solid foods like it is his job and loves his bottle!  Sounds pretty normal to me!!



We went to the zoo yesterday with friends and their baby.  We have been doing more and more family things without me going into full blown panic mode.  I know this road never ends and that there are plenty of bumps to come..but I feel like we are out of the tunnel.  The darkness has given way to light.  And just last week we started to plan...Xavier's first birthday parties...yes parties.  This kid is having three months worth of celebrations!!  Of course our families are so spread out, that we have decided to have a party in each state.  PA, NJ, RI!!  Before, I never let myself think about the future for X.  I only tired to get over the next major hurdle.  All I thought about when I was pregnant was getting him strong and getting him here safe.  Then it was to just get him through the Norwood.  Then I concentrated on getting him out of the hospital.  Once home, my focus was getting through interstage without any major issues.  Finally it was October and we just focused on getting the Glen over with and getting him home again.  Now I am allowing myself to focus on the fun things, and really enjoying being his mommy. I am so proud of him.  He is such a happy boy.  He is such a trooper and truly has the spirit of a fighter....who am I go give up on him?  I am so sorry that I ever doubted him.  Giving up is not in his DNA!!




A little update on the collateral veins that were discovered in Xavier's MRI:  Upon further investigation by Dr. Gaynor (Xavier's heart surgeon) and by the team, they have decided to just leave them as they are.  Dr. Gaynor does not think that they will cause any long term heart issues and that if they coil them now, they will just have to go back in and do it again before his Fontan surgery.  So the plan is to just keep an eye on his heart function and wait till before his Fontan, go in then and coil them before surgery.  These veins are less likely to come back after the final stage. They also gave us a tentative surgery date....2 1/2 to 3 years of age..depending upon how his heart looks and if these veins are giving us any issues...so no cath lab for X!!  Which is a good thing.  I am also super happy to hear that Dr. Gaynor looked at his film and is happy with his heart.  Gives me some piece of mind!!  Please continue to pray for X-man and all his heart friends.  This is a journey that never ends!!



2 comments:

  1. Beautiful enjoy your baby he is amazing and your doing a great job...mwah

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  2. LOVE this post :) And the pics are fantastic!! You guys look so great <3 Can't wait till we can finally get together again!! Much love xoxoxo

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