Thursday, April 23, 2015

Supporting Our Family

It's official... On May 9th,we are moving to Houston for the year to be close to Jackson's medical team! The details are starting to come together as we make plans to go ALL in this next year to best support our family during the upcoming season. It's been difficult to once again box up our lives, but we are forever grateful that Chris' job will allow him to work from home for the next year as we do everything we possibly can to get Jackson on the road to thriving with his special heart.



Prayer changes everything! We believe in the power of prayer and we have seen incredible things come together as  people have rallied with us to pray over the many details that go into making all of this work. Here are specific prayers:
  • Healing over Jackson's heart!
  • Wisdom for Jackson's team led by Dr. Fraser (his surgeon)
  • Clarity for Chris & I as we make a lot of big decisions 
  • Peace and comfort for all of our kids (Ava, Jackson, Hadley)
  • A smooth transition of moving and getting settled before his first surgery


  • Pledge for Jackson's Funky Beat walk (Info below)
  • Make Jackson a card, give him a high five, and show him some love!
  • Take a cool picture or find something that reminds you of Jackson and use the hashtag #jacksonsfunkybeat
This little boy is only 3 and is about to face an intense battle for his life. Despite all that is wrong with his heart, he is filled with joy and is so perseverant. We would love to eventually organize a walk/run for everyone to participate in, but with his first surgery quickly approaching we've created a way you can still help encourage and support our family.


Jacksons Funky Beat Walk
On May 3rd, Jackson will take to the park to show off his super strength. He will walk a mile to encourage all of you that no matter what circumstances you face, with God's help you can do it! We are asking that you consider pledging any amount (nothing is too small) to encourage him and support his medical expenses. All donations will receive a #jacksonsfunkybeat bracelet! Please pledge to our Go Fund Me link to the right of this post. For more information, see our Facebook event: Jacksons Funky Beat Walk This is our biggest need currently as we face a lot of medical out of pocket expenses, moving expenses, lodging, etc.

Thank you to everyone who is reaching out to help our family during this time. We know that God is going to do amazing things this next year and we hope that each one of you that is investing in our family feels just as much a part of the journey as we are. We can't do this without the support and love of each one of you! We didn't choose this journey, but its a journey that makes life incredibly rich in so many ways. Join us in fighting for our boy... it's going to challenge you in more ways than you may even know!

Thursday, April 16, 2015

Battling the Dark Days

Two weeks. Two weeks since we sat in a consult room reviewing images of Jacksons heart. The heart wrenching reality that we face became all too real as we glanced through picture after picture of the many reasons our son will need to go through the unfathomable over the next year or so.

Four years ago I felt that God promised me that He would continue to sustain Jackson beyond each point the doctors would declare intervention needed on his very complicated heart. Four years of living on that promise with every crazy twist and turn along the way. I've sat by the bedside of his newborn body fully prepped for surgery to have it canceled only moments before heading into the OR. I've sat in front of his surgeon and had the call been made multiple times to start surgeries and yet the decision was always reversed after more thought. Until two weeks ago.

We sat in the consult room trying to make it through an appointment where there was no evidence of sustaining moving forward, only images of the beginning stages of heart failure. How is this happening? Where is the promise?

Two weeks. That's How long I have wrestled with God. I've fought, I've yelled, I've cried out. It's been dark and it's been ugly at times. I am convinced that very few things in life will challenge your faith like that of watching your children suffer. It's been a battle I didn't expect to face. It's a battle I am not prepared to fight. But He is.

My heart aches in ways I never thought possible. I start trying to worship and I can't even connect. I start to pray and all I can say is "Jesus". But in all of my failures, God has reached down and comforted and walked with me through these dark days. His graciousness to journey with me even in the times that I've accused him of leaving is beyond me.

Trials help reveal to us the heart of God if we let them. It is so easy to question, doubt, and worry in these times. But it's those moments of tension in our lives that we get to connect with God on a level much deeper. When I am stuck in fear and I choose to hit my knees and simply say "Jesus", there is power in that. Never doubt the power that is in His name. When I read the Word and I don't feel the truth, I have to choose to read it again and again and again however many times it takes to break through.

We are fully embracing the season of life we are in. It is a season of crying and grieving. This isn't our season of dancing and laughing, but it is still a season of trusting and leaning on a faithful God. We are confident that He will NEVER leave us. He has gone before us, he has paved the way, and only He can carry us through.

And on days where I wake up and feel abandoned and unloved I can remember his body broken and bruised for my on the cross. He was left alone for me. He was unloved for me. He was shamed for me. Because He loves me. We are not alone. We are walking with the most incredible God who in the midst of the battle is comforting and bandaging our wounds and strengthening us to continue the fight. What a gift to walk hand in hand with such love. Wherever the road may lead He is faithful to stay. And that is enough comfort for my weary soul today. Come what may... He is my constant.

Monday, April 6, 2015

Surgery Update

I have tried over the course of the last several weeks to update the blog and every time I would log on no words would come. Still today as I sit with tears rolling down my cheeks and a pile of tissues by my side the words are just not there to adequately explain the reality that we are faced with.

For the past 4 years we have watched Jackson from both inside the womb and the outside world battle with the destruction of heart disease. His body has done remarkably well considering the backwards structure and unlikely combination of his disease called LTGA.

Unfortunately his heart is under distress now and in the beginning stages of failing. Please forgive me as the next part of this update is so choppy. I can not for the life of me type anything eloquently about what we are about to experience.  After Jacksons MRI images showed his left ventricle dilated and his tricuspid valve with more regurgitation our surgeon has put together the following plan for Jackson:

1)  May 28th, 2015- 1st Heart Surgery- PA Band & Pacemaker (Hospital Stay 1 week & Recovery 6 weeks)

We will place a band on his pulmonary artery to begin to train (condition) his left ventricle in hopes to at one point be able to switch his heart back to the correct position. Along with the band he will be getting a dual chamber pacemaker that he will have for life. The battery pack will be inserted into his abdomen. He will have two incisions. One for his open heart surgery and one for the abdominal positioning of the pacemaker battery. The battery life is around 8-10 years and then will need to replaced or when needed for the rest of his life.

2) PA Band tightening

Our hope is that the original banding surgery will be successful and that no tightening of the band will be needed. However, because this is all very tricky to guess how he will handle the change of pressure, etc, our surgeon is thinking that we may need to go back in after about 6 months or so later and adjust the band to tighten it to condition the ventricle even more. This again is another open heart surgery.

3) 3rd Surgery- The Double Switch (Avg 2 week hospital stay- Tough recovery)

The goal is to have this done anywhere from a year to 18 months after his first surgery. This is the surgery that will actually "flip" his heart and correct some issues with it. It is extremely risky and not a guarantee that his heart will do well. We will explain more about this surgery as time goes on.

Over the course of the next 12-18 months our precious son will endure more than anyone should in a lifetime. The risks are stacked high, but this is our option right now. With the shape his heart is in if we leave it alone, it will fail. It is time to do something so that we can give him the shot he so desperately deserves.

As Chris and I spend every late night scouring over the details of how to make all of this work we believe that God knows exactly what we need. He will provide. I can tell you that we are standing in front of what seems like an impossible mountain. There aren't the finances, the strength, the wisdom, nor the ability to make it up. We stand confident that this is going to be ALL God and we trust that as He has shown his faithfulness through every twist in Jacksons story He will continue to every step of  this next hike upward.

Please stand with us and pray for our little boy. We are going ALL in to fight for him. Chris and I are throwing everything we have at this and we need your support to help hold us up. We need a miracle! In the coming weeks we will be updating the blog with different fundraising ideas we have and updates on Jacksons story leading up to surgery day. Our life just took a turn for the crazy, but we serve a crazy good God that always shows up in the craziest of ways on our behalf!

Jackson, you are loved beyond words. The torture that this decision has been is never something that words can describe. To willingly let anyone hurt you goes against everything in me as your mom, but I want you to see the world buddy. To live and experience all that God has created you to be. To one day testify of the struggles and valleys that He has carried you through. This is just one season among many in your life. The best is yet to come my boy! Love you to the moon and back, forever and always!!