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!!