This is as Bad as it’s Ever Been…It Could be Worse

I know it’s easy to do, I don’t think we can help but do it, at least in the back of our minds, but please don’t tell me your child is sicker than mine. Please don’t look at me with your raised forehead and cornered eyes that tell me your anguish cuts sharper or deeper, or, worse, that your child suffers more than my own. Please, please, don’t compare our pain and pick apart our differences to prove you have it worse. Because…you do!

Your suffering is greater. Worse than mine by far!

Your suffering is greater because it is yours!

It’s not that one disease is more dangerous or painful than another, or that one of us has been going through it longer or lost more. It’s not about who wins. You win. I win. We all lose.

This is as bad as it’s ever been, at least for me. But, I also know, it could be worse. It can always be worse. So, be with me in heart and I will be with you in love. Loss and fear win when we compete. Loss and fear win when we disconnect. Loss and fear win when we forget it could always be worse.

Your suffering is far more cutting and deeply felt than mine…because it is yours.

IMG_5930I am not an expert on any of this! Buddha’s epilepsy was a cracking smack down that left us humbled and shaken. It was a quick violent theft that not only took money and things, but whole chunks of our hearts. Overnight, it left our lives in tatters and lead us trudging down a path we didn’t start out on. I am as lucky to make 2 sentences fit together as I am to be any sure help in lifting you up through the constant fear and artful struggle that is caring for a sick child. But I want, sincerely, to try! I want to try and help because I feel that in the trying, even just a little, our shared cruel pain may connect us, and maybe do some good. It may help us find each other, and through each other we might find a little more of ourselves, we might be a little more OK. If we hold on to each other we can smack back and crack open a thin glimmer of hope, we might begin to rebuild our hearts and, one day, take a free breath again.

The only way I can force myself to do this is to remind myself it could always be worse. To find SOMETHING to be grateful for, no matter how trite or small. To try and see the good.

I think it just matters that I try, or at least that’s what I keep telling myself.

When we were in the hospital with Buddha for the third time in as many weeks and he..tanked, I remember thinking how surreal and a bit crazy it was that I continued on as if it was a perfectly normal routine. To sleep on the sterile purple plastic sofa under scratchy bleached sheets while my husband half hung off the hospital bed to which my son was tethered became instantly normal, too easily expected. Those were the days our son was in status. Those days we had only a handful of options and very little control over any of them. Those were the days where every second felt like an eternity and he could either stop seizing, be intubated and put into a coma, lose cognitive function, or…well it could have been worse.

The ninth floor of CHOP is the top floor for inpatient pediatric care, every trip up the elevator the doors open to the NICU, the Cancer Ward, the Cardiac ward, and so on, until the doors open on the ninth floor, neurology. Our floor was never bustling in the same way as the others, the energy was still, the halls quiet. Except for an almost inaudible hum it almost felt like a hotel. The difference was the hum though, it was the hum of holding ones hope on a squeezed tight breath. A breath that moves but doesn’t release, replenish, or relieve. We never had the crazy alarms or the padded pounding of nurse’s shoes running to rooms with resinating code calls. Nine South is a quite ward and it’s emergencies seem to linger, to tease, rather that stop a heart or shut down an organ.

Nine South is the floor of wait and see. It’s a hell all it’s own. I remember one midnight at least six doctors standing around the computer with only the screen lighting their silhouettes and thinking, “They’re so calm. It’s all so normal. How is that possible?” It was as if they were weighing breakfast options before an early morning board meeting not a midnight life threatening, seemingly unanswerable, problem.

There is no quick fix for us. Neurology is the floor of trial and error, of guessing, and of wait and see.

LFM Doctors around computers

Ironically, this hell is what lead me to see how much worse it could get.

Because I could peer into other’s rooms and feel the hum of their held hope, or see the quick pain of their waiting, I realized that, although, we were now in a “private club”, we were not alone. Every time I made a trip down those halls or watched the elevator doors open and close, I thought, my God, it could be worse! I saw it and heard parents from every floor say the same thing. I can’t fathom how watching my child’s body shut down until he couldn’t speak, see, walk, or hold up his head could get any worse, but somehow I knew, I was aware that it could most certainly be worse.

Dinosaur Hospital

It’s a fine line to walk, balancing panic with gratitude. It almost feels like a tricky dark magic. A half land. And good lord there were people much braver, more humble and Godly than I waiting and somehow surviving. But walk it I did. Or, again, at least tried.

Knowing it could always be worse does not lessen my pain or assuage my fears, but it does help me keep a bit more present. As terrible as it sounds, and as guilty as it makes me feel, I think it gives me hope to know it could be worse. It’s a hard struggle to suffer and know you’re lucky all at once. It’s an active choice to try and make room for those opposing feelings.

We’re all there, in our own way, holding our breath, desperate to crack the air until it damn well gives us emotional circulation again.

So let’s decide, together, if we could please, that things are hard enough and we don’t need to compare. We just need to be thee for our kids and for each other. Under all the differences we ARE the same and we understand each other as few ever will. We are in this together and for that I am also grateful…and sad.

I know your pain is greater than mine and my pain is greater than yours…because the pain is ours.

But, It could be worse.

 

One Reply to “This is as Bad as it’s Ever Been…It Could be Worse”

  1. Wow, that was incredible. I know you are a talented actress and dancer but I didn’t know you had such a way with words. Really moving and really well written. I’m in awe.

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