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.
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