Some Random Thoughts on Grief and Grace

I know many of you are wondering how we're doing. And I wish I could answer that easily. 

On the one hand:

• We are adjusting to caring for Eden. 
• We are getting used to sleeping less. Really.  
• I'm more relaxed about a messy house. 
• We've had lots of wonderful meals brought to us (thank you!)
• We are getting out of the house more and returning to some normalcy. I even took all 4 to the doctor the other day. We showed up a little late, and Josiah had no shoes on and only one sock but we made it. 

On the other hand:

• This is hard and there's no end to that in sight. 

The same goes for Eden. On the one hand, she's doing great! But I'm not even sure what I mean when I say that; I guess I just mean that she's home, she's eating and sleeping, and nothing tragic or too frightening has happened yet. On the other hand, she struggles daily, sometimes hourly, with her secretions. She aspirates regularly, she sleeps sporadically (and her sleep is often interrupted because of the discomfort from the secretions pooling in her mouth), her g tube site is healing somewhat normally but has needed some extra tending to over the past days, and we're still trying to figure out how much food to give her and how often and over what length of time to help control her reflux (and it's a huge guessing game since the poor thing can't signal when she's hungry or full because we are artificially filling her belly). But we have made some strides in the past couple of days, and I'm thankful for that. 

So I weigh all of those things and feel like we still come out ahead. We're doing good. God is providing all that we need each day. 

I've been reading through 2 Corinthians regularly and in chapter 6, verse 10, Paul talks about being sorrowful, yet rejoicing. And I think that sums up our new reality. 

There is real rejoicing. We delight in Eden as our daughter. We enjoy her. I love to kiss her sweet cheeks and rub her little baby feet and legs. There is real celebration over her life. And there is real joy in knowing that God is in this for our good, that he has ordained this for our good, and that all of the suffering that we (and Eden) endure will be for our present and eternal joy.


There is still a lot of joy in our home. At any given time, you may find the boys jumping into piles of pillows with their bellies out or having a dance party in the living room. Luke provides almost constant entertainment for all of us as he's learning new words and phrases daily and has stepped right into his role as "little brother". The twins are constantly asking him to chase them or wrestle them or jump on the trampoline with them. He's delighted to join in on whatever escapades they are involved in, and the three of them have a good little thing going. They adore their little sister and are completely unaware that there is anything different about her. 

And Eden really is doing well- especially when you consider that the neonatologist in the NICU recommended that we make a DNR (do no resuscitate) plan before leaving the hospital, and the nurses recommended that we learn CPR right away, and that our home health nurse advised that we know where the nearest hospital is before we left for a family vacation. Basically every doctor or specialist we've seen has made us feel like our baby is a ticking bomb, but from our view she is doing so, so good! 

So why title this grief and grace? Because we're up to our ears in both, and it's seeming like that may be our new reality, some days leaning a little more heavily to one side or the other. 

There is so much grace! That there is still tons of laughter and JOY in our home is grace, grace, grace! That Eden is doing so well is grace! That we now feel like it's no big deal to suction her or hook a tube to her belly to feed her is grace! That we function pretty well on relatively little sleep is grace! We have all that we need every day- grace upon grace. 

And yet there is real sorrow, too. 

Many times when I hook the tube to Eden's tiny belly, my heart hurts because it's not supposed to be this way. Or when she wakes screaming because her mouth is full of saliva and she's scared and doesn't know what to do. (I think she's learned that it's not good to swallow, so she pools the secretions when she sleeps and sometimes they become too much for her and it seems to scare her). It scares me too and it makes my heart hurt. Or sometimes when I wake up and hear her breathing become high pitched and rapid, and I wonder if this is going to be the time when she just stops breathing and I fly out of bed to check on her. She's been fine every time, but I still return to bed and pray that God will help me not to worry about that day but to trust that he will be sufficient for that day, whether it's soon or years from now. 

So how do I wrap this up? We're okay to live with this tension. It's okay to live with a seemingly paradoxical set of emotions regarding Eden's life and disability, sorrowing and also rejoicing. I know many people (ourselves included) would like to just hear that we're fine and then put a nice little bow on that package and move on. This trial just isn't like that. 

But we know this isn't the final chapter- we live with this tension now, but one day it will be all joy. One day Eden will be freed from a broken body and a broken world, and she'll live in a perfect body, perfectly enjoying her God. And as Don reminded me early on, we'll have all of eternity to enjoy her as our daughter with no sorrow or grief or sadness. Lord, haste the day.