Their names are Bob and Danielle. They are a young, newly married couple who just had their first child. As I read their post it was so humbling and encouraging all in the same. I ended my night by kissing my sweet daughter and thanking Jesus for my kids. I hope this post challenges your perspective too.
Here is Bob's post...
You guys have been awesome. We walk our days with happier steps thanks to you. We’re grateful for the kind things you continue to throw at us, mainly really sweet notes and good food. There is power in the pen, and quite possible more power in the spatula.
Baby June continues to climb the charts of cuteness. Its impossible for the nurses not to admire June’s long eyelashes, her full head of hair, and her well-groomed fingernails (thanks mom!). June is still everyone’s favorite.
Heading into our 11th week of NICU, it seems like we’re now the veterans here. We look at the new NICU parents and smile at how long they scrub their hands. It used to take us 10 minutes also. We were so scared a germ would jump out from underneath our fingernails into June’s mouth. New NICU parents also ask permission for everything (“yes you can take a picture of your baby, sir”) and are way too polite to the nurses (just kidding so are we…).
The hardest part of seeing new parents come and go, is being reminded that your little girl has been in here way longer than anyone hoped. This means something is obviously wrong…
And it is. Something is wrong.
The last few weeks have been the author of some of the happiest, and darkest moments of our lives. Baby June has experienced several miracles and has given Dani and I countless inexplicable moments of joy.
But on the other side of those sweet memories have lived some sad realities, mainly that June continues to develop major complications that extend way past her heart problems. Without going into great detail, new tests have determined that June’s brain isn’t developing the right way, along with her lungs.
The council of doctors at DiMaggio’s have determined not to move forward with treatment for June. They have based their decision after looking at things from every angle imaginable. The team here has been very accessible to us, and have thoroughly explained their reasoning. The things they say make sense on an intellectual level, but conflict with everything we’re feeling as mom and a dad.
Dani and I decided to seek other opinions. June’s files were shared to teams of doctors at other hospitals, including Miami Children’s Hospital and Devos Children’s Hospital in Michigan.
We were hoping somebody would see something with fresh eyes that would examine June’s case in a different way. Sadly, this didn’t happen. 3 teams of doctors unanimously decided to pass on heart surgery for June.
This leaves us with a short time with June.
We’re not sure what this will look like yet but have begun conversations with hospice care. Making sure June lives her remaining days without pain, and hopefully full of mommy cuddling, is our highest priority.
We foolishly hold out hope for a miracle of biblical proportions. So we ask for more prayers, as this is now, officially, that scene in the movie…
My greatest struggles with miracles, and faith, and sick babies getting fixed has less to do with the existence of God, or the power of God, but more to do with the will of God. I know God can, I wonder if He will.
After all, my prayers are usually offered in a hurry, right after I’ve done something bad, and hardly ever feel powerful. Why would He?
I also sympathize with a God that is really, really, really, really, really busy. How could He?
Why would He? How could He? One questions His love. The other His ability to multi-task.
The truth is, if the Bible is true, not only does He love Baby June more deeply than I do, but He’s also paying more attention to June’s every breath more than I will ever pay attention to anything.
He loves June with ferocity and pays attention to her with fierceness.
So please join us in knocking on the door, of the throne room, that hosts the God, that's big enough to breathe stars into existence, and close enough to notice the small things that fall. Like sparrows. And sometimes babies.
Once in a while He doesn’t let the baby fall… and that’s the scene in the movie we hope we get to see.
I pray this post challenges you to have a shift in your perspective as it did mine. Please remember to pray for baby June, Bob & Danielle- that the Lord would do a mighty miracle for His glory. What that might look like only God knows.
