Monday, January 7, 2013

Things are happening....

The start of the new year has packed in a lot of craziness. Although, with our life, I don't know why I would expect anything else ( : Here is an update on the mulitple things that are happening  (or not happening):

1) We still have yet to sign for a place. We have about 20 days to move and so far, nothing is in writing.We have passed on a few deifferent places for no other reason than just not feeling at peace with it. This has required trust, as we literally have had nothing else on our list at the time. But, as we have learned, we don't always know God's plans, but we have come to understand the peace that comes when you are moving according to His will. We BELIEVE that God will give us that as we strive to daily be where He wants us to be. There is a little something in the works, but it is all very preliminary (be praying it works).

2) The biggest change is that we got a surprise call this morning from our nurse that the heart team discussed Jackson's case at their surgical conference this morning ( a month earlier than we were told they would), and that they would like a MRI to be done to look closer at the right ventricle function. The basic consensus is this: A team full of brillant minds is not in agreement with what the plan should be for Jackson.... worst feeling in the world as a parent. Basically, there are some around the table that say that the risk for his surgery is too high and that we should wait to see how far in life he can go before something is needed. Then there are some that say that although the risk is high, the chance at a longer lifespan is worth it. They argue that doing something now while his stats are stable is the best opportunity.

This is all summed up very generally, there is a lot of information behind all of this. The type of information that makes you hurt behind belief. As a parent to know that either road you choose comes with very high risks and very unknown outcomes is like a heavy burden that feels unbearable.

Good thing we have an awesome God to toss that burden on!!! It's not easy, but we are believing that God will continue to direct us as parents and give us peace to know which decision is best for Jackson. We have been given a great team of care here, one that looks at Jackson's life from every angle. We feel confident that as we continue to move forward with these next steps that God will give us wisdom beyond anything to confirm the very best for our little guy.

Chris and I are starting a 21 days fast on the 10th. We truly are clinging to God for everything. When there is confusion, doubt and uncertainity.... "When you don't know what to do, do what you know." As we stive to  figure out our finances, our living situation, and Jackson's line of care, we will continue to do what we know. To run after Him who first loved us. To pray, to give, to fast, to seek, to share, and to love. We are excited to see how God teaches us and restores us in the next few weeks!

Wednesday, January 2, 2013

January 2, 2013- New Years Resolutions?

My kids have a fascination with pictures. On phones, on walls, at resturants, on our computer, and even more for the ones they can get their little hands on. So for Christmas I made them each little photo books. I filed them with our favorite pictures this last year doing all the things that we have grown to love in Houston. As I pushed each printed memory into it's own little sleeve, I realized just how much I have to be thankful for. This last year has been an emotional roller coaster as we clung to our sanity with doctors apppointments, sold our house for money for medical bills, moved away from our family and friends to Houston, and ended with the news that Jackson is now on board for 2 heart surgeries in 2013. And yet, amidst all of it, not one picture in those books had even a hint of stress, a tear of sadness, or a hint of fear hidden in it. Not because it didn't exsist (oh boy, I can say it was all there), but because God has continually restored us.

2013 is gearing up to be a year I am feeling very unqualified to face. When I read these articles on patients and look at pictures of children doing what Jackson will have to do, I will admit it paralyzes me. How can we do this? How can Jackson do this? There is the reality that no matter how much we prepare ourselves for this, there is nothing we can do to ease us into watching him endure such great risks to fight for his life. As a mother I can tell you it is shattering to anticipate the outcomes of these very serious and risky surgeries.

As 2012 has come to a close we are so very thankful for the incredible memories we have had with both our kids. As we stand at the beginning of the new year very tired, emotional, and feeling weak, we know that only GOD can do 2013! My resolutions for this year:

I commit to starting this year and every day in it EXPECTING greatness from the God who I have grown to know as an constant COMPANION, an almighty PROVIDER, a giver of PEACE and WISDOM, the ultimate COMFORTER, the GREATEST physician, and a miraculous HEALER.

I commit to stop trying to plan the things I can't predict, answer the questions I don't know, and achieve goals that I have unrealistically set for myself. I simply want to REST in knowing that God already has it all planned out. There is no statistic, no amount of knowledge, or science that can out do what God can do.

I am starting today by saying this: I am EXPECTING 2013 to be the biggest part of all of our testimonies yet. I pray that for any of you reading and watching the events this year that through a very special heart your heart and lives will forever be changed.

Let's journey together..... I can say with confidence that there is something very special about my little boy and all of his complexity points to something much more than a diagnosis. He is a rarity that people and doctors wait with anticipation to see what happens next. I'd hate to spoil anything, but I have a feeling all the best stuff is yet to come ( :