Curve balls, Lemons and Silver Linings

I am the mother of a critically ill child. When this is better, I will be the mother of a disabled child.

I never thought I would utter those words in any capacity. But then, that's the human condition, isn't it? That subconscious yet deeply rooted belief that, "these things happen to other people, not me". Color me humbled.

To be fair to myself, I had had a perfectly normal pregnancy. There was no reason to believe this was going to happen. The odds were in my favor.

So when the surgeons and cardiologists explained my newly born son had, as they called it, "a constellation of defects" in his heart, I was floored. I can honestly say that was a nicer phrase than "ridiculous shit-ton" as I framed it in my mind, and it helped absorb everything without quite so much despair and devastation.

But then we got his next diagnosis of Williams Syndrome.

As I tried not to sob hysterically while the doctor and geneticist explained everything, I found myself staring out the window imagining the red balloon I had watched my older son playing with just before we went to bed the night before my delivery. I remember its whipping wildly about the empty space of my living room; its high-pitched whining fading painfully slow as it lost every last bit of air that kept it inflated and afloat. That's exactly what it felt like to be in that moment. Like whatever reserves of silver linings and bright shiny optimism I had left just blew out of me until there was nothing left but a sad emptied sack of nothing and what was.

But, there's this thing about balloons: you can always blow them back up if they haven't altogether been popped, and I (despite what I may sometimes wish) am not the type of balloon that gets popped. So I draw whatever air I can get into my lungs, and I borrow the joy and faith of others when my own fails me until once again I'm whole and afloat and able to endure.

My grandma has this saying: "You can pitch a tent, just don't build a house.” Meaning: you can visit the grief, sit and dwell in it for a time as you examine and process it; but you can't stay there forever. You have to get up and do the next thing eventually.

My older son gets this a lot better than I do (as per usual). While I was falling to pieces, as he has always done since he was a little boy, he saved the day when I could not. He quickly pulled out his phone and loaded our good friend Wikipedia to research what Williams Syndrome was, and without skipping a beat he announced with a smile on his face as he pointed to his phone for evidence:

“It’s ok mom! Griffin’s going to be ok! He’s just going to be the extra kind of special.”

I think my children will always teach me far more about life than I will ever be able to offer them.

I thought about all of this these past four days as Griffin struggled and improved, then struggled and improved some more in his tiny baby steps, on his Griffin timeline, and as I started to get frustrated and fearful of how this will all end. Yes, it was a pretty basic conclusion of what his brother has, but I think it was probably the most apt. Because we can break it down in the technical and medical sense all we want, but it won‘t really make a difference. Griffin was made as God intended, in God’s perfect image, so he really is just “the extra kind of special;” and he will get better according to God’s perfect plan, whatever that may look like.

So I'll stop looking at the monitors with fear and I'll quit asking the doctors for answers they don’t have; because Griffin is his own unique kind of special and he’s going to do what Griffin does best: push us as far as he can go, and then surprise us all. (I think maybe God and him are in cahoots...)

And to my first love, my oldest son Urijah: thank you for being your own kind of special. I'm so sorry I cannot always be as strong and stoic as I should be for you in these moments. I'm sorry if you ever feel as though there's not enough space left for you to be anything less than brave and resilient. I know you worry about me, your dad, and your brother more than you ever should, and despite our best efforts to deter you from this. But thank you for being all those things even when you don't have to be (and you probably shouldn't be so much of the time). You remind me daily how to be selfless and brave and hopeful. You are all the good parts of your dad and me, and then you take it to a level I don't think we will ever achieve. You teach us more than we will ever be able to teach you. I love you the most, and the best, in the whole wild world.