Desensitized

As we've spent the past 72 hours in the hospital, particularly the CVICU, I'm always reminded of God's faithfulness and peace, and being able to find joy amidst pain and suffering. No, it's not easy, but even in the hardest of times, God still blesses us with sweet little nuggets of light and truth. 

Before we left for Houston, I had the opportunity to catch up with a dear, sweet friend. As a mother, in general, it's tough to find time for adult conversations, but as a  mother to a medically needy child, life just looks different. Friendships are different, community is hard,  church--we are unable to attend, and expectations are constantly being broken and shattered. As I sat and talked to my friend, she made a comment and it was almost a revolutionary thought in my mind. She said that on the outside, Stephen and I make our chaotic life look normal. That to those we don't interact with on a regular basis or those who are outsiders, that it's easier to become desensitized to our situation. It's easily forgotten, when we are home and going through the daily rhythms of life with our sweet family, that some seem to forget the burden and reality that Stephen and I carry around on a daily basis. Our baby is sick. He's considered terminally ill. His heart will never be "fixed," on this side of Earth, and as we celebrate all of our highs, we are faced to push back the fears of the future. How many of "xyz's" do we get to have with Easton? 

Even now, as I'm sitting bedside in the CVICU, consoling my child, it's hard to think that it's easy for people to lose sight that this journey to help give Easton a shot at life, is not just fought in the hospital, it's a daily battle. One that is tiring and exhausting, but it is one filled with joy. God has given us a special little gift (well multiple ones), and He has allowed us to look a life in a new perspective. We know and understand the fragility of life and we embrace each and every day with Easton and each other as a gift. I rarely am consumed by or thoughts about "down the road" because I'm normally focused on getting through and enjoying the day. 

After Easton's surgery on Thursday, we got to briefly sit and talk with the surgeon and what he said blew us both away. He said that Easton had made it further than a lot of people thought he would make it!! I mean how cool is it to hear a very talented and distinguished doctor say (not in these words or remotely close but it can be translated) that Easton's life is a testimony of God's goodness and faithfulness. What a sweet nugget of joy to cling to and give praise for--that God has sustained Easton's life using the gifts and talents of doctors, surgeons, and modern medicine. Thinking back to that moment, I think about how Stephen and I painfully waited during his eight hour open heart surgery, including some time on a bypass, and what we got hear afterwards was such a confirmation of how God still provides joy, even in the hardest of seasons. 

As we bear and go through the hardships of life, marriage and raising our family, Stephen and I are very aware of our blessings and thankful that God has given us joy in the midst of pain. We know that this is just a season, and not all seasons last forever, so today, we find hope in that God has given us a nugget of joy to cling to as we help our sweet little man live his life to his absolute fullest. 

July Update

It’s been a little nuts around our home lately. After our last update, we have spent much time on the phone with Easton’s surgical team trying to figure out a surgery date, as well as try to secure lodging for our time in Houston, and try to get our house in order. 

As of now, what we do know is that Easton’s surgeon does not want to wait a long time before preforming his next operation. We were hoping to find out his surgery date last week, but due to scheduling woes, we will more than likely find out tomorrow. We’ve been told to expect as early as the end of next week to maybe two weeks out, just depending on what they can do on their end. It’s all very overwhelming to think about, on top of being 35 weeks pregnant with baby brother. 

With Easton’s heart anatomy being so unique, there is a tentative game plan for surgery, but unfortunately, we won’t know for sure until the operation has started. The surgeon will replace/resize the BT shunt that helps create blood flow and growth to Easton’s pulmonary arteries and it might finally be time to address some of the MAPCAS (collateral arteries that shouldn’t be there but are supplying about 50% of his blood flow to his lungs). Essentially, the collaterals are helping right now but they are not stable; with them supplying so much blood flow to his lungs, the cardiologist and surgeon want to make sure that they can salvage them but won’t know until the operation if now is the right time. Depending on what exactly is done, we’ve been told to expect a few weeks to a few months of recovery. 

Obviously, as you all can imagine, there is a heavy burden that Stephen and I both carry knowing that our sweet little man needs these necessary operations but it is scary to walk this path. We are constantly asked how can those around us help or to let those around know when we need help, so we are going to be connecting the link to Easton’s GoFundMePage to this post. Life in the hospital is not only physically and emotionally draining, it is financially draining as well. While God has blessed us immensely with great insurance, there is only so much insurance will cover. It is about $3000 a month for lodging (close to the med center), $350 a month for parking, and then whatever is spent on eating and food while we are there. All of the money that was previously given in the fund has all gone towards our medical expenses over the past 15 months that we have traveled back and forth to Houston. 

To those of you who are our diligent prayer warriors, not a day goes by that we don’t feel covered in prayer. To those of who have witnessed and experienced life with us and Easton, in both Fort Worth and Houston, thank you for the love and hospitality that you have shown our family. To those of you who feel compelled to give financially we couldn’t be more thankful for your contribution to help our growing family in a very hectic, daunting yet exciting season of life. 

We are utterly thankful and grateful for all of the prayers, support, and encouragement that have been bestowed upon our family. Thank you. 

https://www.gofundme.com/littleredninja2