So, yeah. It’s been quite a while since I’ve actually written anything here. Life is hectic, and often my mind is running a million miles an hour and I don’t even stop to process all that has gone on and all that continues to be our day-to-day life. Other times, I’m so exhausted that my mind can’t muster a single cognitive thought, and I am quick to fall into being numb for a little while. Some days, I wake up so filled with joy that I sit down to write and share all that God is doing, only to have my entire perspective on life flip over something trivial and I spend the rest of my day wallowing in despair. I make notes here and there to myself, knowing that at some point this season of life will be over, and I will find myself overturning any rock just to grab a faint memory of the richness, joy and difficulty of it all. It has been such an extreme whirlwind already, and much of it feels like a blur.
I suppose you have stumbled across the myriad articles, blogs, and forums about my family that seem to be stretched to the far corners of the Internet. What started as me sitting down with a Tennessean reporter for coffee here in East Nashville has blown up into something that I never saw coming. It seems everyone has picked up on Pearl’s story from The Washington Post and Daily Mail UK, to USA Today and probably the most visible being The Huffington Post. There are even a few political forums and atheists’ blogs who’ve felt the urge to chime in on things.
It’s tough to not go and read what others have to say about my family, and I admit to giving in to that urge too much. There are so many assumptions, accusations, and misunderstandings being discussed, and it is a fight to not engage the insults, so I haven’t much. There’s something strangely sanctifying when your weakness and character (some of which is actual, a lot which is completely untrue) is put in bold letters, all caps, and displayed for anyone in the world to read. It’s humiliating, but not completely in a bad way, when you see that the majority of the 7000+ comments on The Huffington Post are from people who are overwhelmingly unimpressed with you and your decisions. When you get shredded to the degree that we have, you’re left standing naked with nothing left to prove. Which is where we were all along, but never realized it. It’s freeing to know that even if we tried to prove ourselves, our efforts would return void, so we ought not even try.
Instead, we look the other way.
Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. Philippians 4:8 (ESV)
The amount of darkness seeping in through all these outlets pales in comparison to the amount of beauty and life pouring in through other means. It’s not as though we retreat into our church community or our other friends, but instead we stand alongside of them. We don’t escape into a false reality where nothing stings and suffering doesn’t exist.
We engage actual reality, which is this: God, himself has written a beautiful story. A story that he wrote before he even started building the world. He has an endless reserve of everything that he needs to accomplish his purposes and sustain us in order to fulfill our roles in his story. We can’t exhaust this. He sometimes chooses suffering as a means to accomplish his purposes, and then invites us to enter into that suffering rather than avoiding it. And then he meets us there. He pours himself out for us and fulfills every single promise that he has made to be with his people. He privileges us to participate in this together, as a community and with him. And at some point, we will receive a reward for being given the grace to persevere, and for not losing sight of the One who has actually been carrying us the whole time. How incredible is that? We actually receive a reward for receiving a gift! There’s really not much we bring to the table. It’s all a gift.
So that’s what we dwell on. That’s what sustains us. That’s what makes us not avoid suffering. And that, I believe is what drives others to join us in this. In spite of all appearances, our life is filled with beauty and wonder, and we are sustained by a God who is gracious, patient, and crazy with his love for us.
And this same Creator, who is gracious and crazy in love with us, is also sustaining Pearl. According to every doctor she has, she is not suffering and her seizures aren’t painful for her. They are disorienting, and they are exhausting. However, they have been very much under control for a few weeks now. We constantly revisit and adjust her prescriptions, finding that balance between using enough medication to keep the seizures minimal, but not giving her so much that she is completely disengaged from the rest of the family. Is life hard for her? Yes, it is probably very difficult for her. Though she is not on oxygen and breathes without the help of a machine, breathing is extremely tiring for her. Her nasal passage is abnormally formed in such a way that air does pass through it, but not always easily.
Life is hard for Pearl, but her Maker gives her all that she needs. He is with her, and she belongs to him. He is the Good Shepherd and he looks after her. He opens her eyes when he is ready for her to wake up, and he gives her body rest when he is ready for her to sleep. He makes her to lie down in green pastures and he leads her beside still waters. Pearl is his. He will sustain her long enough to glorify him in living until he is ready for her to glorify him in dying… and she will be with him forever. Those decisions have never been up to us and never will be.
And life is hard for Brennan and Abigail as well. They have made many sacrifices over the last few months. Every time Pearl is readmitted into the hospital, their lives turn upside down. One of us is always there with Pearl, so they are left with only one parent to kiss them at bedtime. Brennan has mentioned more than once that to him, this is the saddest part of Pearl’s hospital visits. They have had to cancel many play dates and trips to the park because of situations that arise with Pearl. Abbey celebrated her 3rd Birthday at the chicken strip shop across the street from Vanderbilt, because Pearl had to be admitted and one of us had to stay with Pearl. They live in the constant tension of knowing that their baby sister will probably not be with us for a long time. So, are they suffering through this? Absolutely. Are they learning and experiencing things as toddlers that many adults never learn? Yes, they are. They are growing in so many beautiful ways. We play ninja swords and change baby doll’s diapers when we can, but it’s not nearly as often as they would like. Brennan is struggling with his identity and his role in the world. He’s down on himself sometimes and at other times, thinks he deserves to be the center of attention in whatever room he just walked into. So what do Ruth and I do as parents? We walk humbly and cautiously. We lean further into Christ asking him to equip us and give us insight into how to best shepherd them. We know this is hard for them, and we never take that lightly. The same God who is sovereign over me, Ruth and Pearl, is also wholly engaged with Brennan and Abigail, and he has their best interests in mind with everything he is doing.
So there you go. Life is hard. And beautiful. And filled with awe. And wonder. And suffering. And peace. God is sovereign over all of my family and there is not one particle of dust on our living room fan that he isn’t in control over. He is the Good Shepherd, and we trust him. He is here with us, and sometimes he ordains that we suffer, all the while we know that it is for our good and his glory. If he didn’t spare his only Son from suffering, but rather ordained it, why would he spare us from all suffering? I’ve got to be honest…I read ahead and I already know how the story ends. Jaws are going to hit the floor. Actually, knees will hit the floor as well. All of this suffering, which is true suffering, seems quite temporal in light of what’s to come, and what’s already here.
by Eric Brown