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!!

MRI Day

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!

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!

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 ( :

December 18, 2012- Have you considered?

As all of our news is starting to sink in, we have been hitting about every emotional roadblock possible. Even things I thought were so solid, so unable to be touched, have not only been touched, but have been rocked. Our faith, our foundation, our marriage, and our finances have been through the fire this last week. As we have dug deep into our souls, our love for another, and our pockets, we have watched as things that normally come so easy for us to talk through and walk through have become like ticking bombs just waiting to explode.

One of the cruelest parts about the disease that Jackson has is that he seems so normal. People would never guess that beyond his charming little grin and converse sneakers that there lies a very complex and very unhealthy little heart. He is such a champ and plows through everything a normal little toddler would, but the reality of his little life is one that keeps us up at night and on our knees. Sadly, we are forced to make some of the hardest decisions for his life while he is tolerating his condition in hopes that we intervene at a point where he is strong enough to endure the corrections necessary to save his life.

These decisions are tough for Chris and I as we are two very different people and handle these situations very differently. As I have watched the last week rock us emotionally, mentally, and financially as we set ourselves up for 2013, I have these fears racing in my head.....

These situations are what make or break a marriage. Are we doing everything we should to protect ourselves?

Ava just accepted Jesus, how do we explain God's love to her as she watches Jackson suffer?

How do we afford all of this?

Will this save Jackson's life or are the risks too high for him?

The list goes on and on and on with very valid concerns. It literally keeps me up at night. The Lord layed something on my heart today. Although I have considered the worst in every situation, have I even taken the time to consider that maybe just maybe....

My God is big enough to not only sustain my marriage, but after this year to create an even better friendship amongst us. That in enduring the darkest of days together we would grow more in love with each other than ever before. That yes, Ava will see suffering, but she will also be living amongst miracles, and daily being shown how God truly provides for our every need. That she will be surrounded by people giving, sharing, sacraficing, and donating and she would declare in her own life that God is love. That any anxiety with our finances would grow our hearts to better sympathize with others that are struggling and yield in us a heart that gives more than ever before. That Jackson's testimony no matter how difficult the fight would reach others in a way that nothing else would. That people would see his life, his timeline, and his story and see that God is still a God of miracles even when events don't play out that way we wish they would.

 I don't know how that looks practically for us right now, but what I can say is this:

I have considered it. Am beleiving for it. Now please Lord let it be.

December 14, 2012- Ava gives her heart

Right when I was feeling like everything in life is impossible, this miracle happens:

 I was sitting reading a book to Ava and Jackson and leaned over to tell Ava that after I laid Jackson down for a nap that we would work on making our magnetic nativity set. She said, "Like for baby Jesus? I love Jesus. I want him to come into my heart." It took me completley off gaurd. We have always talked to her about it but I never expected her at this age to not only get it, but to desire it.

We walked down the stairs, Chris was able to take a 15 min break, and we prayed. She told us that she wanted Jesus in her heart becuase she knew He loved her and she loved him too. It was right there in that moment that the chaos of life stopped and it was perfect. We have all been so excited that we even baked a cake to celebrate. She said, "I love how Jesus knows I like to be a ballerina."

Boom! God gave me a promise before Jackson was born that out of him would flow "rivers of living water". The thing is that God's not done there. There are now and still are lives to be exposed to who God is through this story. Jackson's heart beats to a different rhythm. He is rare in the medical world and to those that know him know that he is one special little boy. We weren't just placed in this situation to save a heart. We were given a "broken hearted" little boy to heal those that don't even know their heart is missing something.

So as we continue to share, to fight, and to see lives changed, we ask that you stand with us. Here is the very real side of where we are at. Here comes the humility and vulnerbility.... Lord have mercy!

Places here within mostly a 30 minute drive to the hospital are:

$1400 to $1600 a month (nothing fancy, just super basic 2 to 3 bedrooms in a safe nieghborhood- This is still being conservative- welcome to wanting to live close to a top notch hospital)

1600 x 12= $19, 200, add in a few deposits and roughly we are at $20, 000 in rent expenses this next year. Add the growing medical bills that keep coming to that and will continue to throughout the year and ouch..... it hurts! Just trying to give you a clearer picture of some of the numbers we look at.

Being here with the top doctors is what Jackson needs. I can assure you that we have given this all we have. As the Lord leads, please help us. I believe that as much as the Lord directs, He also desires for us to lay our very specific needs before Him and before others. How do people know how to help if we don't declare the need? Please join us in prayer that the deposits for a new place and the peace to financially committ to this next year would come. So hard to fight this fight, but to Him be the glory for every single detail and every roadblock that we overcome!

Thank you for standing with us! Lives are being changed!

December 13, 2012- Gotta start the climb

After Monday's appointment, the last few days have been filled with a lot of tears, a lot of quiet moments, and a lot of "what are we going to do now" moments. We are literally at a stand still and the clock is ticking for us to get moving. If there is anyone else out there like me, there is the constant battle between trying to stay busy to keep your mind off the pain and the deep desire to climb into bed and sleep for as long as it takes. I spent a good deal of the night after the news sitting by the toliet feeling so physically nauseous. Never in my life have I been so emotionally stressed that it has literally taken over my body this way. I know that the right thing is to just surrender it to the Lord, but can I please just get an amen to the fact that as much as my mind knows what to do, there is still the very huge part of being human that says, "This hurts and it's going to hurt and I just don't know how to do it."

I really would just love to let this all sink in and just take our time with easing back into life as we "know" it. There are some very first practical steps of this next part of our journey that are causing us to jump into action. The only issue is that we don't know how to jump, where to jump, or have the resources to jump. Hmmm.... sounds like a good time for faith to enter in!

Our lease is up here in about a month. We signed this lease intially as a 6 month temporary place for us to get our feet planted here in Houston, learn more of what is normal for Jackson's condition, and just give ourselves a little bit of a break. It was never intended to be long term.... we truly can't afford it! I gave our 60 days notice to leave and then came our doctors appointment. We didn't expect the news we got. It looks like the hosptial will be much more apart of our life than we would like it to be this next year.

So, we have been relentlessly looking for a place to go. The only issue is that the only places that are truly much cheaper (at least $100 or more less a month) are fairly far from the hospital. We don't feel the need to be right down the street, but we also don't love the idea of being 45 minutes away in knowing that our family and Ava will need to make numerous trips back and forth during Jackson's multiple surgeries this next year.

So, we can't afford the place we have and we can't afford the places that are near. Our health insurance is wonderful but after already feeling the crunch of hitting our ANNUAL out of pocket maximum the last 3 years running and knowing that this next year we will hit that with just Jackson's 1st surgery alone, we are anicipating one huge bill early on in the year. Lord, how do we do this?

We have already sold our furniture, Chris sold his surfboards, and now we are left with a one bedroom apartment and small storage unit. There is nothing left to sell that would really make a dent and yet we have the weight on our shoulders that this fight is not a sprint, it is a lifelong journey. I have tried looking for work, I have even picked up a very tiny part time job. I so badly want to make this work, but the fact is that if there was ever a time that my kids have needed me, this is it.

We need to make a decsion by the end of this week since technically our place is up for grabs as we speak. We know we are not alone in this fight. God has orchestrated an incredible team of people that have surrounded us with such love and support. So, now we are calling on you. We need help. As we contnue to try to not only fight, but to do it the right way, we are asking that you stand with us.

It's not about just people giving. We need your prayers, your advice, and your encouragement. We are at a point where we need God to intervene... like overnight. We pray that as you follow along with us that you would keep us close in your hearts. It's a hard time of year to feel so completley overwhelmed, but life is all about perspective. With the risks we have to take this next year with Jackson's life, we don't want to waste any part of this incredible Christmas season. Please partner with us in any way that you feel able to. If you have ever met Jackson, or have even just followed his story, you know that he has a very special purpose. God knew when He gave him to us, that we would need others to come along and help fight for his story to be shared. We pray that you would consider helping us spread his story and his fight. We weren't meant to crawl under the covers and keep this journey to ourselves. This little man has a story that has to be told. I am brokenhearted and yet so very proud to have a front row seat to his incredible "special heart". Much love to everyone and Merry Christmas Y'all! Tis the season for miracles!