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



Sunday, January 15, 2012

Tis the season to be Jolly...





What a wonderful holiday season we had.  It was picture perfect.  I would have been happy with a little more snow, but we had such an amazing time with our family.  We started off heading to Rhode Island.  We left at night so that Xavier could sleep and that is just what he did.  It was so great to spend time with Nate's parents who we have not seen since after we got home from the Glen.  They are so good with Xavier.  It took all of three minutes for him to warm up to them.  We also got to spend a little time with Auntie Shayna and Uncle Charlie who are excitedly awaiting the birth of their first child in February.  Xavier got to meet tons of his extended family.  He was so good...and everyone loved seeing him.  We were blessed to be able to spend a whole week up north.  Nate was able to work from his parents house and the band took a much needed holiday break.  On Christmas Eve, I was very emotional.  Christmas was a time that I was not too sure we would get to.  Actually standing at his crib, watching him sleep on Christmas Eve took me back to the day we got his diagnosis.  I was so scared and I was not sure that I was built to deal with all this.  I remember thinking, How can I live in hospital, How can I watch my baby suffer, How can I take care of him.  I have say I have impressed myself.  But I don't do this alone.  I have so much support.  If you have to live at a hospital, CHOP is the place to be.  Great food, awesome coffer 24 hours and people who do their best to make you feel at home.  CHOP took such amazing care of him.  They kept him comfortable while he recovered.  They taught me how to check his stats, give him his shots, deal with his feeding tube, take care of his incision, taught me what to look for in order to keep safe between surgeries.  They gave me a crash course in the heart and they were there to answer all of my questions.  Our cardiologist in Livingston, Dr. Fernandes, takes my calls at all times of the day and night.  He loves X as much as we do.  Our pediatrician, Dr. Kint, took the time to get to know Xavier and us.  They see me right away if I am worried at all.  My mother who travels 4 hours one weekend a month just so I can sleep or shower or actually go get  my hair done.  She visits with us and helps me with the house work.  Plus X loves her to pieces.  Nate's parents who we skype with all the time.  They shower Xavier with love and us with support.  Even though they are far away, I know with all my  heart that they would drop everything and come up north if we needed them to.  Our extended family and friends who pray for us and Xavier every day.  Even though X is doing well, we do not stop praying that God will continue to hold him tight, that he will continue to bless him with that perfect health that God alone can provide.  We praise God for all the blessings and the miracle that we have here on Earth.





















We heading back to Jersey for just a night and then we hit the road again, this time to BTC!!!  We got to spend a few days there with my family.  It was so great to see everyone.  My grandmother just gushes all over Xavier.  She was so happy that she was feeling up to holding him.  Connor was happy to see his baby cousin.  Xavier got to meet some of my friends from high school.  It was an all around great time.  I know that I seem to be saying the same thing on every post, but I AM SO THANKFUL!!!  IT WAS THE BEST CHRISTMAS EVER!!!

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