These things I will hold in my heart

We all live in a world of unknowns.  Most people, however, don't live their life thinking about the unknowns.  That is one luxury that I am not afforded.  The unknowns about Xavier's life haunt me daily.  I find myself wondering what this MRI next week will show.  I wonder when his next surgery will be and how difficult it will be to tell a 3 year old that he needs heart surgery.  I think about what his life will be like.  Will he be sick a lot, will he find something that will make him happy?  Will he understand why we fought so hard.  Will he wish that we didn't fight?  Will he need a valve replacement, a heart transplant.  Will he struggle in school, will he live a full, normal, happy life?
I worry daily about the Supreme Court overturning the Affordable Care Act.  I worry about the fact that with one swift movement of a pen, Xavier could be denied health care, could reach his lifetime cap by the time he is 5 (if caps were legal now, he would be halfway there), and the out of control premiums that we pay now for private insurance could triple.  I worry and I worry and I worry....and then.....

In his own, simple way he says to me...."stop worrying mom!"  Look at that smile.  How can I spent our time together worrying.  I have made a promise to my family that instead of spending our time together waiting for the other shoes to fall, I am going to take in every moment and hold it in my heart.   Now I know that it is not realistic to think that I am going to give up my worry..I am however a human and a mommy.  However, there are things that I can not change.  I can not make the people of the country see that if we lose this act, everyone will feel the sting and we could be faced with the fact that we may not be able to give Xavier the best possible care.  I can not go in and tighten that valve.  I can not take away Xavier's pain or change his path.  All I can do is PRAY and PRAY some more, educate people about the ACA and the amazing things President Obama did for children who were born with birth defect or who are sick, and take Xavier to the top hospital in the world for his condition.  I do all these things..and I will hold that in my heart.

The Ross family got a little taste of normalcy this past week as we packed up our bags and headed South to  sunny Fort Myers, Florida .  I hate to fly..and now I am flying with my baby who may or may not need oxygen during the flight.  To say that I was a nervous wreck is an understatement.  We got to the airport super early, due to the fact that we would be flying with a ton of meds and incline needles.  I declared all of it in the very short family/meds line at the security gate.  We had no problem at all.  They did a bomb test on the stroller, but the guy said that is pretty standard when then strollers are too large to fit through the scanner.  The people were very nice, which was refreshing.  We waited at the gate and X fell asleep.  We finally got on the plane to our seats and then we just waited.  Turned out the plane needed a new windshield wiper.  Needless to say, the extra hour of waiting sent Xavier over the edge for a bit.  But he held it together, ate, slept and had no need to his sats to even be taken, let alone did he need oxygen.  He is such a strong little dude.  We had an amazing time in Florida.  Xavier had a ton of firsts including his first time at the beach, first time in the pool, first time at a restaurant, first time at the zoo and he started waving hello ( I think that is because he met so many new people).  He was just one happy little guy.  And Daddy and I really, really relaxed for the first time in almost two years.  Xavier's oxygen was the best it has ever been when we were in Florida...go figure.  I guess leading a normal life is good for the body as well as the soul.  He enjoyed himself and was all giggles and smiles the whole time...and that I will hold in my heart!!!

Many people has expressed interest in helping us with Xavier's medical bills and insurance costs.  Please know that anything that people give to us; money, gifts, prayers and love are greatly appreciated and make a huge difference.  I have provided a donate button on the side of the blog where you can donate directly to Xavier.  We are very, very blessed to have such amazing parents, siblings, extended family, friends, doctors, and a heart community that have taken care of our needs.  We pray for each of you daily and we smile when we think of you.  And ALL THESE THINGS I WILL HOLD IN MY HEART!!

Now please enjoy the pictures from our vacation!! <3

Enjoying our "holding pattern"

A few weeks ago, Daddy had to go to Boston for a couple of gigs..so Xavier and I packed up and heading West!!  We are super fortunate that Nanna come to visit us every couple of weeks and Pappy comes to pick her up, so we get to see them on a regular basis...but we really miss Cousin Connor, Uncle Tripper, Great Grandma, and many of our other family members and friends.  There are even a few that Xavier has never met.  We had a wonderful time playing and visiting.  Xavier went to church and met some of his biggest supporters.  All in all it was a great trip.  We made it home just in time to go to our local cardiologist.  We had not had an ECHO since January, so I was getting a little on edge.  As long as I hear, no change I relax a little. Of course I pray every day that we will go in and hear that the leak has gotten less, but as long as it is not any worse, I am one happy mamma.  And that is exactly what he said.  It is still there but no worse.  Everything else looks good.  We are in, as he puts it, a holding pattern.  We head to Philly April 3rd and 4th for an MRI of his heart and brain.  This test will give us a 3D image of his heart and will give us a definitive number on the leak.  Before it was 4-18% of the blood was leaking back..so I am praying that it is the same or less.  It will also let us look at his brain and make sure that there are no more clots.  We will also use all this information to make some decisions about medication.  He will be sedated, but an MRI is not invasive.  I still dread the idea of handing my baby off to the doctors again.  We should not have to be admitted, but you never know.  So I will go prepared.  We are also planning a little vacation to Fort Myers to visit Grandma and Grandpa Ross...so I will be sure to post some pics from sunny Florida!!  Thank you all for reading and sharing in our lives.  Please continue to pray for Xavier.  Every day our heart community has to say goodbye to another warrior.  Some are young and some are older, but they all touch our hearts.  Please know that we thank God for all the love and support.  Some people have contacted me about helping us with Xavier's medical bills.  As of right now we just have a pay pal set up at: jackielynnj@hotmail.com.  In the coming months we will set up a fund raiser page and a not for profit organization to help with his care.  I am even planning a fund raiser in his honor (any help would be awesome)...so stay tuned!!!

 Bath Time at Nanna's

 Xavier loves Cousin Connor!

 Playing together!

 With Nanna and Great Aunt Donna

Out for a walk!