Surgery Day

The day is here. The moment is now. The very time that we dreaded the most and tried our hardest to avoid is presently our reality. We arrived at the hospital at 6 am to prep for surgery at 7:15. Everything went smoothly and Jackson was a champ getting ready for it all. The doctors gave him some medication to make him drowsy and then told us it was time.

There was a moment where time stood still and even a brief second that I wanted to tell them I wasn't going to give him up. He's ours. My sweet and innocent baby that is in part my own heartbeat. I looked at him; his perfect blonde curly locks and soft skin kissed cheeks. He is perfect. In every sense of the way he is the most perfect gift that we have been able to love on for the last 3 and half years.

You have those thoughts that creep in that tell you it may be the last hug, last kiss, last snuggle, last everything. But then you suppress those thoughts and smile in his eyes because it's been a beautiful ride. An incredible journey and you know that no matter what happens next you have done everything you can. You've embraced the days, you've spent the time, you've laughed more, played hard, and just lived life.

And then you feel every emotion you possibly can. You feel joy as the memories dart across your mind, you feel pain for the road that lies ahead, and then you feel overwhelming peace. A peace that we expected, that we knew would be there. Because the God we serve has promised us that he will never leave us. We are walking and living the very promise that we can have been clinging to in Philippians 4:6-7.

"Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."

Then you pass off your baby into the arms of a stranger and watch them swiftly carry him away from you to fight his biggest fight. You smile and wave and walk to the nearest bathroom and collapse in the arms of your husband and feel like every bit of your body is being crushed. You almost feel like the life is being sucked out of you... and it kind of is. You cry and then you breathe and you unlock the door. You take a step, the same step you took the day after the diagnosis. One slow step and you just know that God's got it. He's always had it and He always will. And that makes each step away from the OR a little stronger.

Thank you Jesus that in the middle of the holding room for surgery and in the waiting room you are giving us peace that is beyond anything we could have comprehended.We are standing firm that the best is yet to come for our sweet boy! Now it's time to wait, cry, and trust. Another 4-8 hours before surgery is done. It's a road we never wanted to walk, but any life no matter what it looks like with Jackson is extraordinary. I am so glad God chose us to love on him. He's pretty special! One step at a time!

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.

WAYS TO SUPPORT OUR FAMILY

PRAY FOR US

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

ENCOURAGE US

• 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.

#jacksonsfunkybeat

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!

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.

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!!

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.

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.

 

 

 

 

 

 

 

 

 

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!!