Standing in the hospital room, rocking my sweet baby boy to sleep, I listened to the surgeon talk about Easton’s case, and did all I could to hold in every ounce of emotion that I could. There is nothing more daunting than hearing one of the nation’s best heart surgeons discuss the severity and riskiness of operating on Easton’s heart. Nothing on this planet prepares you for parenthood, but even more so, parenting a medically high risk child. Sometimes, the hardest part in all of this, is that Easton looks healthy. Looks can be so deceiving that there are even some days I find myself forgetting just how complicated and severe his congenital heart disease really is. Then, in that moment (or in the 45 minutes that we sat with the surgeon), I am brutally and quickly reminded of how Easton’s heart isn’t normal. Hearing that he needs an ALL day—like sun up to sun down, if not longer, where his little body is put on a bypass machine and his chest is cut open, is a hard pill to swallow. I always knew that Easton would have to have open heart surgery (multiple ones), but there isn’t anything in that moment of actually hearing the surgeon discuss how soon it needs to be, that prepares a momma as her own heart begins to break into pieces. The surgeon was frank, didn’t dance around the subject, and was completely honest. The only thing he is certain on is that this will be a risky operation, with no guarantee that Easton’s heart can be “fixed.” (Insert crying momma) He also went on to say that if we didn’t do anything, Easton would begin to deteriorate and no parent wants that for their child, either. So, with confidence, the only thing to do is to move forward, in a month, with this life altering surgery. I say life altering because all of our lives will forever be changed.
It’s in this stillness that my mind races with thoughts (mostly fears) of what our future holds. And, honestly I don’t know what it holds. I so desperately want my son to live, as any parent would, but I don’t want Easton to suffer in this life. I don’t want the obstacles of living to be too daunting on his little body. I want to expect great things of the surgical staff and the great physician (God) but I want guard my heart from the potential hurt. And there in that moment, I find myself towing a fine line between being optimistic yet realistic. If I teeter to the optimistic side, I don’t want to get ahead of myself and not be prepared in a worst case scenario. If I teeter to the realistic side, I find myself in constant fear and angst about what is to come. On either side, I’m setting myself up for unhealthy expectations. Ultimately, I’m finding that it’s hard to surrender that I don’t have any control in this. None. Not even the surgeon. I mean, he is going to do what he can, but in the end, he doesn’t determine Easton’s future—the Lord does.
In the midst of all of this, I’m struggling to pray. I don’t know what to pray for. Deep down, I know that I should pray that the Lord would be sovereign but it’s hard. I think eventually I will get there, but for now, I have to start taking baby steps. My own heart, even in all of it’s "normal-ness", isn’t perfect, and I am in need of some healing from the great physician. I appreciate being told how strong I am and that others telling me that they couldn’t go through it, but there’s nothing special about me; I’m just like everyone else—I have thoughts, fears, anxieties, hesitations, and buried deep (at the current moment) happiness. It just so happens that the Lord has chosen us, particularly Easton, to be a vessel for His kingdom. Ever since we found out about Easton’s heart, several hundreds of people have followed our story, his story. You’ve read my blogs (even though they have been sparse lately), you’ve commented on pictures, you’ve sent us encouraging messages, you have committed to praying for our sweet boy. It never gets old hearing how Easton has opened doors for people to hear about the goodness and faithfulness of God’s perfect plan.
And yet, I fear the worst, leaving the hospital without my boy. Him not making it through this surgery. Or him making it through the surgery but not surviving the recovery. I see nothing wrong with having fears, it’s just what I do with them or better yet, don’t do with them, that can lead me down that a winding slope but even in my greatest fears (potentially losing my sweet boy), I know that God would still be good and His plan would still be perfect. Just because God’s plan is perfect, doesn’t mean I don’t struggle. My struggle and hurt is very much so real, it’s tangible, and It penetrates deep down in core.
Every time I feel angst, what I want God to remind me of is how His kingdom is better. I used to ask Stephen all the time, how can Heaven possibly be better than the joy that you bring me? And now Easton? Well I can tell you that after experiencing the hurt and pain of infertility, the hurt and pain of not knowing if my unborn child would make it through delivery, and now the pain in knowing that his challenges aren’t over. He faces a massive major open heart surgery. I am starting to relinquish the idea that this life is “as good as it gets” philosophy. Is this life all that it’s really cracked up to be? This is not to say that God doesn’t bless us with immense joys and pleasures here on this Earth, but with that comes the lust that lures people into thinking that this is as good as it gets. I don’t want that. I want more. I want to wake up every morning and go to sleep every night with the hope that there is “more” (in Heaven). I know that this is God’s redeeming grace to me because if Easton doesn’t make it, then I know that what awaits his sweet body is more than what he could ever have here on this Earth. His heavenly heart will be perfect—no transpositions of the great vessels, no MAPCAS, no pulmonary atresia and stenosis, and he will have all four chambers that work. Believe me, even as I type this with tears in my eyes, it doesn’t take away my hurt. It doesn’t take away my fears of what it would be like to wake up every day and go to bed each night without seeing his big ole gummy smile. What it does give me is a flicker of hope, that in this wasteland where I am living, that he is the crack in the door filled with light, and that is a sweet reminder that there is MORE.
I write all of this with a heavy heart, not knowing the future of my sweet blonde haired, blue eyed boy. His smile and laugh are enough to melt you to your knees. When you look at him, you see his sweet sweet spirit and personality. He makes being a mom everything I wanted it to be and more. He makes me want to be a better mom, wife, and person, in general. Does this situation suck? Absolutely. But if I said I wish it were different, I wouldn’t have my sweet boy. The situation we are in is unbelievably hard, it shakes me to my core, but I have to believe, with great conviction that Easton has touched the lives of many people, and for that, I am eternally grateful to be a small part of God’s bigger masterpiece.
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