a smattering of guts... it gets real up in here

For the past 6 weeks I have struggled valiantly to write a deep and profound post about all of the things that have happened so far in this extraordinarily eventful year. For six weeks I’ve been reading about how faithful and good God is, and a lot of Scripture has been quoted by others and come to my mind unbidden in times of need. Bethany’s sister, Sydney, has written a breathtaking account of those first moments and days of crisis. I will not attempt to recreate my own version. What I will do is be a bit more honest about what’s been going on inside of me. At times, it can seem downright easy to say on Facebook or to my friends’ faces that “it’s been a struggle, but we trust the Lord” and all that. I’ve been told that although no family should have to go through this, our family is kind of a prime candidate because of our strength. We are the type of family that can handle this.

Encouragement. It can be a funny thing. Most of the time, it can take you from a darker place into light. That’s sort of the standard. Unfortunately, there are rare exceptions, usually in the form of a weird flaw in perception that the one being encouraged possesses. I think I may have that flaw. When I hear about how good God is, or about how He’ll see us through, and how great it is we trust Him (which we are saying we’re doing), and how strong and resilient we are…well, now I have no choice but to be super trusting in God. Now, I have to stay upbeat and share all of the happy stuff, and qualify bad news or personal hurt in the light of “well, I know it’s going to be okay because I know God knows what He’s doing”, and I have to be as strong as everyone thinks we are. And this is no one’s fault but my own. I can guarantee that there is not a single person who has showed care for me this year that would be disappointed in me for showing a chink in my armor.  And the rub of it all is that not only am I not the only one really hurting in all of this, I am actually nowhere near the epicenter of the hard parts. Joseph is not my child. Stephen and James are not my children. I’m not looking at the intimate details of the many diagnoses or spending hours alone watching for danger signs in my sick infant. I’m not at work, thinking of my spouse alone with our child in the NICU and possibly feeling helpless. The finances aren’t going to be my responsibility in the end.  So, how can I reasonably look people in the eye with their sentence or paragraph-long exhortations and not say, “yes, this is hard, but God is working this out for His glory and we trust Him.” But it’s not how I feel. At all. However, I can’t say what’s going on inside of me when I talk to people. I am, in fact, a magnificent coward.

Terrified. That’s how I really feel. I’m terrified because Joseph is still in danger with an uncertain fate. I’m terrified because his long-term prognosis of Down Syndrome means that not everyone will understand him, or want to understand him. I am speaking honestly here, so don’t judge me- I am absolutely terrified that Joseph will be collateral, some sort of person whose job it is to teach other people how to be gracious and kind. When I hear stories of those who have been positively affected by someone that they find somewhat distasteful because of a mental disability or lack of intelligence (which, if you think about it, is a great thing that God is using people to help us grow and change), it makes my stomach physically hurt. I’m kind of a hypocrite in that way. I think those kinds of people are so special to God and loved by Him in a unique way… but the thought of that burden on one of my little guys is just terrifying. I want him to be protected and cherished by all, not just those whose hearts have been softened.

My ongoing life theme has been joy in the face of all else, due to the unwavering grace of God. Maybe my problem is that I’m not seeing His grace so much in this. I mean, I see lots of good things that have come from all of this, especially in the ways that God has worked through His people to take care of my family. It just doesn’t outweigh the pain. When I think of the pain I feel, the kind that stifles all air no matter how wide open the windows are, I just don’t see the grace. I don’t see His goodness. If you rank God’s goodness in terms of the events unfolding on this earth, He isn’t good at all. And it’s hard to keep the perspective that we can’t see it all, we can’t judge it because as humans, we are finite. We are essentially blind.  I celebrate Joseph’s life, but I can’t help but acknowledge that a lot of the parts of this are the freaking worst. I hate that I get annoyed because sometimes I feel like, to so many others, he was a novelty and now people are getting tired of him. I hate that I assume the worst in people far more than I ever have- that I assume that some of my friends don’t care just because they don’t push to talk about him when the subject naturally changes. I don’t want to always have to talk about him and hash out my feelings, yet I condemn those who would talk about anything else. I kind of really suck right now as a friend and family member.

One thing I am thankful for- in all of my doubts and frustrations and hurt, when I get to hold that sweet boy, my heart is restored for those brief moments. I see a little life that is so vibrant. He is such a fighter and yet such a sweet little infant. If he can keep going, then what more can I ask for?

My hope is that my feelings will eventually catch up to the truth, the reality that I thought would never sway in my life of knowing that God is sovereign and trustworthy and faithful. Until then, I know I have to obey. And be nice to people. And not expect them to read my mind when I speak the opposite of how I am actually feeling or thinking to protect myself.

I don’t really know how to conclude this post. It’s kind of a raw one. I certainly hope that no one that has tried to encourage anyone in my family feels marginalized. I (and I know I can speak for everyone in the fam) am SO thankful for the shockingly high amount of support that has continued to bless us tremendously. Please keep praying for our sweet little Joseph. And truly, thank you for being my friend (this is me, not the fam). I’m sure it’s not always been so easy this year.