Tuesday, December 18, 2012

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.

Friday, December 14, 2012

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!

Thursday, December 13, 2012

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!

Tuesday, December 11, 2012

December 10, 2012 (Surgical Consult)

As you know we had our surgical appointment for Jackson today. It wasn't surprising, but none the less it was our worst fear becoming a reality. We haven't been able yet to compose to pick up the phone to call anyone, but at least wanted to get an update out that explained a little further.

The plan at this point is this:

January 24th- Echo/ekg and doctors appointment with our EP doctor.

Early February- They will use the data from the January appintment to present at a surgical conference where all doctors (cardio, EP, surgeons, etc) will be present.

Late February- Will get a call for another surgical consult where we will discuss everything that was talked about at the conference and shcedule Jackson's 1st surgery. Should be scheduled for something quite quickly after this consult.

1st surgery- PA band will be placed to condition his left ventricle to be switched with his morphilogical right ventricle. A dual chamber pacemaker will be inserted as well.

We then wait an estimated 6 months to a year for this ventricle to condition before we attempt what seems the impossible.... the dreaded double switch.

2nd surgery- The double switch is actually called one of the most difficult and complex pediatric surgeries. They will go in and actually flip his heart (to try to put it simply).

So, all in all, we could technically be gearing up for 2 major surgeries in 2013. We are somewhere in between completly devastated and relieved that someone actual has a plan since the day Jackson was born. We have lived with the stress of waiting and watching for a year and half and now we will switch gears to the stress of watching him suffer for a season.

To be honest, it is all still sinking in. It is much like the day of his original diagnosis where life seems like an impossible blur. I don't know how to get up and do tomorrow. However, this time we are in the hands of an incredible team. Today, 2 very important things were confirmed.

1) We will remain in Houston this next year. Our lease is up in a little over a month. We are having a really hard time finding something that we can afford that is even close to the hospital. This is an area that we are being streched in faith. We continue to tithe and continue to beleive that the perfect place is out there..... but truly we need to find something like as of yesterday.

2) Dr. Fraser and our team at TCH is the place to be. We won't be pursuing other opinions. We feel completley at peace with his care and his judgment. Something we had prayed that would be clear to us today.... and it was!!!

So tonight I wonder how I will ever look at my son recovering and sufferng. I wonder how I will recover as well from a parents worst nightmare. I know that Chris & I are strong, but this is something no parent should ever have to face. I wonder how to get up tomorrow and the day after that with all of this hung over our heads. It feels paralyzing. It feels like our life has come full circle back to our first appointment. Devastation.

What I can say is this. What I have seen in the last 2 years as it seems to have come full circle, is that we have seen with every turn that God has and will continue to be faithful. Where I have watched my heart ripped to sheds, He has made it abundantly full. When I have felt like our finances couldn't continue the fight, God's provided all our needs. So to him who He is able to do abundantly more than I could ever imagine, I lay all my fears, all the details, and all my deepest pain. I know He can take this trial, this test, and turn it into an incredible testimony. I am believng and clinging to that promise. That through the heart of my most precious that anyone who sees and hears the good work that is being done would taste and see that God is good!

Tonight I am going to be in denial, watch the voice, and toast my husband with a glass of wine. But, you better believe that tomorow I will be back at it..... gloves on and ready to fight!

thanks for the support, prayers, and love. We will all get through this! Keep this little face in your prayers... isn't he worth all of this??? What a sweetheart he is.