It’s been awhile since my last correspondence with a lot of you. It’s been a rough few weeks. In terms of the grieving process, it often feels like one step forward, two steps back. It seems recently, the hard times come more frequently than the easy times, though there is a theme of joy that is constantly yet quietly running in the background.
For you, it may seem like the news of Pearl’s diagnosis came ages ago, and that the grieving process has had time to run its course. It may already have fallen into the “remember when” territory of your heart. For us, I don’t know how to say how substantially different it is. We are still in it. She is still with us and is still growing and we are still being changed.
It happens over and over all day every day. Our hearts loop everything we hear right back to thinking about Pearl. Even amongst laughs between friends, we cannot escape these thoughts. Nor do we want to. We are constantly stretched by the tension of reaching out to others, trying to connect and even be comforted, only to realize that the business of life and humanity’s constant pursuit of trivial comforts and happiness have caused our efforts to return void.
I’ve heard it said more than once that for some, dealing with the pain surrounding all of this is too hard, and they haven’t allowed themselves to think about her much. The pain and confusion seem too much for many, so they choose to engage neither. That is a travesty. Pearl doesn’t get the chance to choose how she impacts others as the rest of us do. It’s up to the rest of us to pick up the tab and find ways to involve her life in ours. It’s up to the rest of us to absorb the cost, push through, and be changed, because she is going to be fine. One day, very soon, she’s going home.
One day, Pearl will transition out of this world and into the presence of the Christ whom she never had the chance to reject. As parents, our most simple hope is that our children will grow to lean on Christ, and they will know what it means to be loved by God. Pearl doesn’t have that choice, and in a way that is a gift. Her brain will probably never develop to the point where rejecting him will be an option for her. The first time she ever hears his name will probably be a face-to-face encounter, and she doesn’t have to wrestle through some 21st century, westernized caricature of Christ that so many of us see through a dirty glass.
She, like the rest of us, will never cease to exist. There will come a time, maybe 10,000 years from now when we are all still existing for eternity, that her short life will seem no shorter than the rest of ours. In light of eternity, there’s not much difference between a 15-hour life and a life of 90 years. It’s all very brief. Her life doesn’t matter any less just because most of it will have been lived inside a womb. Her impact is no less either, if you will allow yourself to be changed.
So many have privately questioned me about our decision to bring Brennan and Abbey into the delivery room to meet Pearl after she is born. I want to challenge you in this. I want to push you to think about things from a different perspective. If her appearance is as diagnosed, will my other children be stung by this encounter? Will they be confused and possibly frightened? Is there a chance that they will be scarred forever?
Yes, yes, and yes, but Pearl bears the image of the same God that Brennan and Abbey do. We do not need to hide image bearers from other image bearers. God knit Pearl together in Ruth’s womb exactly as he saw fit. He didn’t make a mistake. Things didn’t go wrong. He brought her form into being with the same intentionality that he has created everyone. So, what’s there to hide from? Again, in times of suffering, we pick up the tab for others. We push through the hard times, and we comfort those that are suffering. We weep with those that are weeping. We don’t just acknowledge that they are weeping. Brennan and Abbey may be scarred, but they will probably not be unchanged, and Pearl, by God’s grace will have her whole family there to walk her home. And what if this little girl with a hole in her face and bulging eyes does live? What if she lives to be 16 years old, and still has the same appearance? You wouldn’t say hide her for 16 years. Again, the length of her life on earth has nothing to do with the value of her life.
Obviously, we are in the midst of tough times, and I apologize if my words seem overly abrasive. You are dealing with two parents who are staring at a calendar, knowing that their daughter’s life on earth may very well be coming to an end, and we find ourselves constantly grabbing at straws with the hopes that Pearl’s life matters to others. There’s also a sense of all the good that we are experiencing through this pain and we want others to join us at the table and feast on it. Be changed, be awkward, be uncomfortable, have a sleepless night or two, but by all means don’t close your eyes and wait for the ride to be over.
We have another appointment next week as well. Please pray for that. I have a sense that Pearl is going to come much earlier than we have been expecting. I don’t have a lot to base that on, but I feel as though God is preparing my heart for this. You’d think that once your baby girl has been given a diagnosis of “not compatible with life,” that all the other news doesn’t really matter. It does. When you get that diagnosis, you find yourself hoping that at the very least, this, this or this will be good. When it isn’t, it can be devastating. You hope for small gifts amongst the hard times, and the small gifts matter more and more.
Thanks again for taking the time to read another of these long emails. If I can encourage you in any one thing, it would be this: sit still and engage the relationships around you. Even if you don’t know how, just try. Otherwise, you are saying that your comfort trumps the value of those relationships. Put the work into it. You’d be surprised how much a lot of the other stuff doesn’t matter at all… often times, not even a little bit. Don’t miss this.
Eric and Ruth Brown