Friday, June 28, 2013

Moving Back

We have had a few people ask about us moving so we thought we would share a little bit about our plans. We are moving back to Austin bright and early tomorrow morning. Although we are excited to be back among different family and friends, our hearts are aching to leave a city and place that has felt more like home then anywhere we have ever lived. If you've been to Houston, you may think we are crazy for loving it the way we do. Crazy, does seem to fit us, but we also believe that God has given us a heart for this city. It's a place that eventually we would like to make home again.

The easiest way we can explain our decision is this:

Jackson's journey as our nurse always says is a marathon. He will always be monitored and followed closely for his life. Eventually when his pacemaker is implanted he will have it his entire life with battery replacement and lead surgeries as needed. His surgeries required are complicated, in fact his Double Switch (2nd surgery needed) is one of the most complex heart surgeries to do. This is partly why the decision to operate on him has been so weighted. The decision process has been whether to put him at such risk as a child or to with go that route and hope he makes it as far into life as possible with as littler intervention until possibly a heart transplant as an adult.

This explains a little bit of why we are often so torn and so emotional after appointments as we are left with this lingering choice. Where we stand now is continuing to discuss and watch for the remainder of the year, still leaving all of our care here in Houston. An MRI will be scheduled for January 2014 and more than likely we will begin with his first surgery and pacemaker following that. If all goes well, his Double Switch will be about 6 months after.

We have been sprinting this journey not treating it like a marathon. We have been signing short term leases, moving our stuff around, shifting Chris' job, and even mentally handling everything in small short chunks. We now stand at a point where we are a little burnt out and we realize what a long way we have to go. It's our plan to move back to Austin to have the support we need to collapse a bit, retrain some habits, grow closer together, and allow the Lord to work through the areas we are most hurting.

With such heavy hearts we say goodbye for now to our tiny apartment just down the street from our hospital and move back to a place where we know God has given us so many tools to prepare our hearts for whatever lies ahead. Broken hearted is sometimes the hardest place to be and yet it's the best place to be humbled and shaped into the person God has called me to be. My heart aches for what seems to linger ahead but I know with confidence that as the time comes to finalize the decision for his life, we will stand with peace. Not without tears, but with unimaginable peace that God who created Jackson's very special heart still holds each of ours.

Wednesday, June 12, 2013

Already on God's Radar

It’s appointment day tomorrow. That day where you want in every way to prepare yourself for the worst and hope for the best. The few days leading up to appointments are not always my best. I am a little more short-tempered, less patient, and anxious. It’s literally like clockwork that the week before big appointment days I gradually become less and less fun. I usually have dreams of heart surgeries, sometimes even dreams where I wake myself from crying. I sleep less, worry more, and ORGANIZE. I don’t know what it is, but the more stressed I get the more I just start ripping things out of closets and drawers and reconfiguring how to put them back in….c’mon, I know I am not the only one out there that organizes to stress relieve. Oh how my husband loves these days ( ;

Yes, these are my human tendencies. They are flawed and point to a very real need for a God that relentlessly pursues a relationship with me. That even when He has faithfully carried us in the past and He sees me worry more, He takes time to assure me. Even when I try to fix things on my own, He gently reminds me that it’s not my job. That in the blackness of the night where I find myself weeping over the outcomes of what may be, that He comforts me in His timing and divine plans.

As appointments start to pop up on my radar, I find the utmost comfort in knowing that they have always been on God’s radar. There isn’t a single detail of tomorrow morning that He doesn’t already know or care about. He knows the position of each chamber, the regurgitation of the tricuspid valve, the ejection fraction, and on and on. There isn’t one thing that He hasn’t already prepared us to hear tomorrow or one thing that He won’t equip us to handle. It’s never easy watching Jackson forced into such an adult world or Ava watching from the sidelines, but God’s growing such an incredible little army out of my family. One of courage and compassion, Love and commitment. Jesus, we choose to honor you tomorrow. In the good times and the bad, you are worthy. You are worthy.










Thursday, June 6, 2013

Balancing Marriage

We haven’t been very good about updating the last few months. It’s been a bit of blur of a sweet time and a reality check kind of time. It’s hard to sum it all up, but in a nutshell here is what we have concluded:
God has given us an incredible journey to travel. We’ve had our ups and downs as a family and have been overwhelming blessed by God’s faithfulness in providing in the different seasons of joy and sorrow. Over the last two years since Jackson’s diagnosis in May of 2011, we have truly experienced so many extremes. Jackson’s life has and continues to reveal so much about our own character, our purpose in life, and the unwavering love of an unchanging God.

God has used these past few months especially  to uproot and reveal so much in our own hearts. I do believe that there is beauty in allowing the Lord to use your vulnerability in sharing the raw emotions that you experience as you journey through trials. I will say that we are learning so much about failing hard and getting back up again. It’s about to get real right here…

I believe that outside of my relationship with God that my husband is the next greatest gift; though if I am being honest, the last few years have not reflected that. My time, my emotions, and my love have been poured into my children. They’ve been thrown into trying to balance saving one child’s life while making sure the other one isn’t growing up faster than she should have to. My days are spent caring for the kids and my nights are spent in what seems like medical school. While I know that this is needed, I also know that finding a balance and creating boundaries are essential, something in which I have failed at miserably.

If you think about the things you discuss in parenting you can imagine the intensity and emotions that surround our very repeating conversations on most experienced heart surgeons, pacemaker options, surgical risks, and best transplant facilities. The weight of the issues we carry within our marriage and the things we share in responsibility with are difficult. They are things that have taken over and created a very supportive and still very loving relationship, but one that we know needs some restructuring and redefining. A lot of the last few years caught up with us very quickly in the last few months.

We are imperfect people serving a perfect God. Long before he gave us Jackson, God gave me a husband that I am called to cherish. If you know him, you know that he is incredible! Although we have both struggled to know how to comfort each other and meet each others needs during these last few years, I can say that God has given us a commitment to each other that I am so blessed by. At times I feel lost in how to comfort him when he weeps for our son or how to relax into the fun loving sporadic wife that he desperately needs even in the midst of stressful times.

I know that I am not the first woman to ever unbalance the love given to children and to her husband. It’s a hard one to figure out, but one that I know is worth seeking out to do my best at. God knew every trial we would face together and he couldn’t have picked a more committed and loving man to bless me with. God desires a fruitful and life-giving marriage for us and we are confident that as we are willing to seek Him, he will show us how to not only journey together, but to have fun doing it! Here’s to a summer of diving back into fun dating!!


Monday, February 25, 2013

Thank you for your support

As most of you know last Wednesday our car was stolen. After getting things settled with the police and insurance here is what we know so far:

1) The insurance company has to almost treat you like the theif to get all their information. God bless my husband as he tried to keep his cool while being treated like a criminal. After they ruled that out, they informed us that they need to wait for 20 days while the police try to turn it up before they can classify it as a loss. Then they will cover the vehicle. They will minus our deductible and try to get us a decent price for it.... I have a feeling I might have some negotiatng ahead of me ( :

2) Our car insurance will not cover anything in the vehicle because that is seen as personal property. We have checked with our renters insurance and unfortanatley there was miscommunication in the plan we had. We had gotten the policy thru our complex and got the required amounts but it turns out it is just liability insurance which doesn not include personal property.

Thankfully our car was not filled with valuables which is why we have wondered the reasosn the theives chose our car. It was however holding our 2 carseats. If you know me, you know car safety is something that is a passionate subject. I researched for months with each of our kids car seats before we bought some of the best. I am so sad to see them go, but at least my kids weren't in the seats too ( :

We have had several people ask about helping us replace our car seats and wondering how to help. If that is something you would like to be part of, the easiest way is to hit the donate button on the right hand side of our blog. Thankfully we have a wonderful friend who is letting us use her car seats from her children that have outgrown them for now. We have been so blessed by the outpouring of support and concern as we face another road block in our journey. We are constantly encouraged by people asking how to help, what they can do, and how they can pray. In the midst of uncertainty, we are forever changed by our unchanging God. He is so good to us and we are determined to produce good fruit out of this unfortunate situation. Thank you to everyone who is trudging along with us!! Day after day we find hope because we know we serve a God much bigger than our current circumstances!

Thursday, February 21, 2013

A stolen Car

After months of debating whether or not to stay here at our place, we have multiple times settled on our apartment being the right place for us now. Everytime that we come to that conclusion, something stops us dead in our tracks. This last week has been one hard slap after another as we have battled through some very difficult battles. Some of which have dealt with Jackson, others that have been with family issues, and now we face the most current slap.... a stolen car!

We came home last night from our church small group and parked on the 4th floor of our gated, 24 hour security watched apartment garage. We spent a little bit of time talking about a phone call that I had gotten earlier in the evening and how we felt it had solidified the purpose of us being where we are at. With our lease only awaitng Chris' signatures this morning, I left to take the kids out for just a bit and found our car was not in the garage. I have to admit that my first reaction was actually laughter becuase the thought of it just seemed ridiculous.

The amount of stuff on our plate at the moment seems impossible but perspective changes everything. Daily Chris and I are faced with the reality that 2013 could be the year we lose something much more valuable than a car. With each passing moment we live in a world where the things we hold most precious are not a guarentee. The theif took our car, our money, our car seats, and the little bit of togetherness I started with today. The theif robbed us of a physical means to make our life function the way we need it to. But, I do beleive that the ultimate Theif is attempting to steal much more.

Well, that's just not going to happen in our house.  I am going to spend the afternoon soaking up precious times with my kiddos, enjoy tucking them into bed tonight, and then I am going to get on my knees with my husband. Petty theives can take my car, selfishness can cause foolish acts, but nothing can steal me from the plans the Lord has for us. Now, if only we knew the plans??? But, I don't have to know, I just need to be willing and committed to whatever the Lord has for us.

Would you join us in prayer as we make decisons about where to live, how to handle our car situation, and that God would continue to provide as we travel through the giant waves in our life? If you haven't been able to yet, please join us on our new facebook page as well so you can see more picutres, videos, and up to date info on all of Jackson's adventures!/FightingForJackson. Thanks for coming along with us!

Thursday, February 14, 2013

A Tribute to my special Hearts

What I love most about Valentines Day is that although we do special things to celebrate, it doesn't feel that much different than any other day. It's not to say that everyday is a romantic blissful walk in the park, but everyday at our house love is expressed in ways that make me proud to be apart of my family. It's not uncommon for me to wake to the sound of laughter from my children or for my kids to come downstairs to a simple surprise that says I love you. It's not rare for my husband to help with the lunch dishes or for me to find a note that he has written to encourage me. No, not everyday s valentines day in our house. Most days include sweatpants, digging around for a lost shoe, and silly arguments about who said what. Our lives are far from perfect, but our days are filled with love. And who couldn't help but love these hearts that fill my home?

My Husband: Chris

He stole my heart around the time I turned 17 and has held it ever since with his committment to continue loving me in different ways with each new day. He is such a blessing to me in so many ways but lately he has been the ultimate source of comfort as we travel this rough and winding road together. Almost 6 years ago I vowed to stick with him through anything not knowing the craziness that would lie ahead. As I sat there on Monday at the hospital waiting to see if Jackson would tolerate sedation with his MRI and held his hand, I found myself thinking about how beautiful love can be. A love so deep can be so rare to find and how blessed I am to have found such an incredible hand to hold during the hardest time of my life.

My Daughter: Ava

She taught me to love in a whole new way when I held her for the first time. She is as beautiful on the outside as she is on the inside. She brings light and life into anything she does. She is as stubborn as I am and keeps me on my toes as I go about my day. There isn't a day that has passed that she hasn't brought laughter to our home and joy to my heart. She is as thoughtful and sweet as kids can come and all girl. From her headbands to high heels to dresses and sparkles, she is a whole breed of her own. She has taught me how to be persistent, to enjoy the simple things, and to dance like no one is watching. She has had to grow up fast in a lot of ways this last year and I am so proud of the gentle and supportive heart she has become.

My Son: Jackson

What else can I say about this little brave heart that I have been blessed with? He is the motivation behind so much of what I do and the constant reminder to me of how precious life is. He has forever changed my heart as I have tried my best to care for his. He has taught me about heartache, about fighting, and about gratitude. He is courageous, ambitious, and most of the time just as crazy as his daddy.   What a joy it is to watch him grow and see his life touch so many others as we all watch his story unfold. There is no word special enough to touch on just who he is, but hands down he is my hero!

I pray that as I take today to just simply celebrate the incredible hearts that I have been blessed with that all of you take the time to do it too! Life is filled with ups and downs, but find a way everyday to appreciate the hearts that beat in your life. Love is a beautiful journey....take the ones around you on yours and embrace all the imperfect moments as a challenge to hold on a bit tighter!!

Monday, February 11, 2013


4:15 the alarm sounded and I was stuck somewhere between springing into action and wanting to bury myself in the covers pretending the reality of today was different. By 5:20 we were off to the hospital in our true fashion.... a little bit of sanity and one bag too many!  All went as planned and even after registering and retrieving everything we were at our check in point 10 minutes early.

Watching your child being pinned down to find the best veins, putting in IVS and pulling for bloodwork is hard. What's even more awful is when you are there as we always are stroking their head, helping hold them down and having to say things like, "You are doing so good. It's almost done. What a brave boy. We love you Jackson." You seem to repeat as long as needed all while your child screams for you to make it stop. I stayed strong, not even a singel tear shed as we went through the prepping process, talked about the risks, and laid him on the table to put him to sleep. After all, that was my job. As a mom I wanted him to see confidence and joy, not fear and pain. Then came the moment where time stood still.

Just a small glipse of what we had to do. Just wanted for people to be exposed to our reality as we fight for a better life for him. It definitley is a fight!

They gave him the medicine to fall asleep. He was screaming being pinned down again, grabbing for me as I stood over him. I was talking to him and then his face went blank, his eyes rolled back into his head, his hand dropped from grabbing my sweater and his body went limp. In that second I bursted into tears as they gave us a brief second to kiss his lifeless appearing body as they carried him swiftly away. As they carried him into the MRI it was if his whole life flashed before me. First smile, first step, the laughter, the memories, and then the door shut.

An hour and a half went by before we were able to be with him again. The great news is he did wonderful. There were no issues with his heart reacting and he only took the minimum 30 minutes to recover afterwards. Clearly, he is a fighter and truly my little hero. He was so brave all day and even smiled and gave a fist pump when his IV was taken out.

Waiting for our car, finally he got to eat something!!

Jackson is incredible. He is special beyond words and everyone who comes into contact with him can see it. He's the patient that other nurses like to check on, the one that makes doctors laugh, and other parents a little bit more at ease. How hard it is to hold his hand through all of this, but what a joy to see the life he brings to others. Today was hard, but today God is still good. In our weakness is where God shows himself strong. I know this to be true as I walked out of the hospital with a rock solid marriage, a smile on my face, and a stable but still loopy little boy. Praise the Lord for another day in our beautiful and crazy life together!

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 ( :