Dear Heart,

“Have courage, dear heart, for there is nothing to be afraid of and never has been.”

This has always been one of my all-time favorite quotes from C.S. Lewis, and the irony is not lost on me how very fitting it will be for the rest of my life as I walk alongside Griffin, daily caring for him and his mighty but fragile heart. Perhaps God was preparing me, because this line runs through my head every day, several times per day. I even have it on a letterboard that sat by the TV in our apartment in Salt Lake, and now sits in my living room at home as a daily reminder...

When I look at this quote there is an excerpt in the third book of his Chronicles of Narnia that always follows it for me:

“But what would have been the good?" Aslan said nothing. "You mean," said Lucy rather faintly, "that it would have turned out all right – somehow? But how? Please, Aslan! Am I not to know?" "To know what would have happened, child?" said Aslan. "No. Nobody is ever told that." "Oh dear," said Lucy. "But anyone can find out what will happen," said Aslan. "If you go back to the others now, and wake them up; and tell them you have seen me again; and that you must all get up at once and follow me – what will happen? There is only one way of finding out.” ― C.S. Lewis, Prince Caspian

Before this part of the conversation takes place, Aslan is silent as Lucy excuses herself and blames everyone else for not trusting in Aslan and following him like she was told to. She comes to the above conclusion on her own as he quietly watches her and she continues to talk it out, and then asks what would have happened had she chosen differently.

I used to simply love these quotes because they were relatable and applied to anyone and everyone. Who has not needed courage in the face of hardship and heartbreak? If not asked aloud, who has not wondered what would have been the better choice, or what would have happened instead? Who has not struggled with the silence of no answers and doubt?

But now, I need courage as I have never needed it before, and I want to know what will happen, and what would have not happened, and everything in between so desperately, because some part of me must believe it will bring me peace and understanding. Because this would be easier than learning to trust in a God who I know without a shadow of a doubt loves my son and my family, but I also know will see His will done, and it may not be what feels to me like the best. This would be easier than being so forcefully thrust into a life where you must practice being present and focused only on the moment at hand to survive each day, and keep the madness and heartache of the what-ifs at bay.

So on days like this past week when something happens to remind me that I will never again live too long in a world where I blissfully assume both my children will live long and healthy lives, I chant these lines from C.S. Lewis like a silent prayer that will imbue acceptance and peace into me.

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Griffin was finally discharged after a 9-week stay from the hospital last Saturday and we made the trip home from Salt Lake to Boise. Considering we were traveling with oxygen tanks, a feeding pump, pulse oximeter to monitor his heartbeat and O2 saturation, and a 4-month-old who was going through the last of his withdrawals, it went really well. We got home in one piece and mostly in our right minds, and we began the process of getting everything needed at home and all his care set up. We were ecstatic to finally be home and all together again as a family.

It was so much more than we expected, though. Trying to navigate and keep organized the increased amount of appointments and therapies felt maddening even with my planner. Trying to turn our living room into an almost fully functional hospital room, while still keeping it an inviting and comforting living space was next to impossible. Finding an efficient way of getting him and all the medical supplies up the stairs each night for bed felt like trying to climb Mt Everest with no real training, all while putting a 250 piece puzzle together. We won't even talk about what trying to sleep with a kid who is on oxygen and desats almost immediately when he pulls out his nasal cannula is like - the short of if it is, you don't. Or how the pulse ox machine only works well if your kid isn't literally pouring sweat from horrendous withdrawals. Then there were the emotional effects on the remainder of us from all the stress, most importantly our older son, who finally allowed himself to feel the enormity of what had happened to his life and family. How do you teach a 12-year-old the dichotomy that you can be happy and grateful and sad and angry all at the same time, and it's ok? I guess you just live it yourself and show them as best you can, but that doesn't happen overnight, and we are still learning it ourselves. So it got pretty heavy really fast. Then there was just the normal day-to-day stuff that doesn't stop just because life has become a monumental task. All that to say, it was not the homecoming we were anticipating - like not even close.

But we were determined to make it work. He had been in the hospital for 9 weeks, he wasn't going to need all this stuff forever, and change is hard and new routines take work to finesse. So we trudged through the weekend and first of his appointments, reminding ourselves of these things unremittingly at every opportunity and difficult moment. And there were good moments and plenty of smiles in there too, they just got lost and unfocused sometimes in all of the chaos and change.

Then, on Wednesday, it happened again - he went into acute respiratory failure and we were taken by emergency ambulance to the downtown hospital. His lungs sounded clear, all tests for infection or hemorrhages or anything like that came back negative, and his heart function was holding up well as it ever had. We were left with an intubated kid and horrid-looking x-rays with no real indication as to why. Our best guess is the stress of the withdrawals on his body aggravated his delicate lungs which were still not entirely clear and healed from the trauma of his last OHS.

So here we are again...

If I'm completely honest, it's a relief to have the help of an army of medical staff to care for him after the stress of the past week. At least this time he's in a hospital that's only 30 minutes from home as opposed to 5 hours. We are able to put some extra focus on our older son who desperately needs time with both his parents. I can sleep in my own bed and in peace for a moment. We can get the house deep cleaned and organized like we were meaning to before he was suddenly turning the corner and being discharged home. These are no small things when you live in Griffin's world.

But, we want our baby boy home and healthy. The house feels empty now without our fourth counterpart. In the single moment of time it took him to take his first breath he cemented his place into our lives and our family, and his presence is irrevocably needed for our home to be full and our family complete. Our puzzle is not complete without his piece.

But the what-ifs worm their way in like a poison causing fear and doubt...

“Have courage, dear heart, for there is nothing to be afraid of and never has been.”

Bolstered. Conviction.

No little boy who fights this hard to stay here is going to be taken any time soon. He has too much left to do and so much more to teach everyone around him. This is not forever, it's just another hiccup, and Griffin does not do small or mild, so his detours are always going to be wild rides that leave us breathless.

I don't know what his or our future looks like, but I do know this with absolute certainty: it's going to leave us better, it's going to make us stronger, and it's going to teach our hearts true courage; because as Griffin shows us every day there is nothing to be afraid of, and never has been.

So here is a brief letter to my own heart, in the hope that I will be reminded of what is true and good in my life when I dwell too long in the dark places and doubt:

Dear Heart,

Have courage, you're going to need it.

You really can withstand far more than you ever thought possible, and more will be asked of you even when you thought that had already been done time and time again. Remember, courage is not born in the absence of fear, it’s made in spite of it. Like a diamond, it’s the pressure and the heat that’s going to make you inviolable and unbreakable.

It's going to feel unfair, and you're going to doubt your capacity. You're going to want to scream and shatter at what feels like the injustice of it all. But you'll remember each time, in the end, that the cracks and wounds are how the light gets in, and you are most certainly not broken, you are just becoming something more (whether you want to or not). You are remodeling just as much as your baby boy's heart is healing and changing.

You are going to want all the answers and the certainty of a tomorrow that is easy and sure, but it isn't going to come. It doesn't for anyone. However, you're going to learn how to rest in the unknown. You will find a way to beat on in the dark until you find the light and the hope. You will one day be fearless of the shadows that are cast by all the confusion and questions and doubt, and eventually, they won't seem to chase and linger everywhere you go.

You are going to go on, strong as ever, and you are going to be more than okay. You are made in His image and the daughter of a King. The Creator who deemed you more worthy than each creature He so lovingly designed and provides for, will not cease to provide for you all that you need to make it through the day.

So there is nothing to be afraid of, there never has been, and there never will be.