So, it’s been about a month since we received Trevor’s diagnosis.

Slowly, over the course of that week, everything changed for us.  The future of our family blurred, where we would live in the future now had stipulations, and suddenly the little stupid annoyances and details mattered less to us as parents.  We *felt* different.  I didn’t know what to call it –

some people told me we were grieving.

But that wasn’t it.

some people told me we were sad.

But that wasn’t it.

some people told me we were angry.

But that wasn’t it either.

I don’t know what we were. Well, ok, I don’t know what we *are*.

Hear me out: If your child is diagnosed with cancer, you know that your child could very well die of this disease unless treatment works.   So you simultaneously have gripping fear (that others don’t tell you is an overreaction), and hope…  *something you can do* about it.

If your child is diagnosed with something like Duchenne, or another terminal disease with no treatment options, you begin to grieve, knowing that you. will. lose your child.

With this, we are in an in-between land.  We have neither gripping fear, nor hope, as there is no guarantee of tragedy or chance for a treatment.  We aren’t grieving, because we don’t yet know what to grieve for.  We don’t know what Trevor will keep, or lose.  We don’t know which of our kids will escape this, or be saddled with it.   So… when you don’t know what’s coming, how do you plan for it?  What do you call it? How do you prepare your heart and guard your soul for the hard times ahead?

 

You don’t.

People say that things ‘happen for a reason’ (and when they say that, I want to punch them in the face  roll my eyes).  That this will strengthen us.  That we will discover silver linings.  That there is a mountain we must climb.  That we this will equip us to overcome something we wouldn’t have overcome otherwise.

…I’m wondering if I have some apologies to issue for my skepticism.

Because I can see in this journey a common, ironic theme. In fact, if you look through my blog, you’ll see it too.  Two years ago, I began writing this blog, and it revolved all around finding answers… getting information… getting a diagnosis… how much I hate the unknown… how I can handle anything if someone can JUST TELL ME WHAT IT IS.

And then… somebody told me what it is, and I have hardly any answers anyway.  Funny, right?  All of this searching brought us to the conclusion that… we don’t get to know.  We get a name, and no prediction of the future.  Nobody can tell us Trevor will be ok, and nobody can tell us that he won’t.  Nobody can tell us how bad this will get, and nobody can tell us what exactly will ‘get bad’.

This has made me absolutely crazy.  How am I supposed to PREPARE for that?  If you can’t tell me how long Trevor will live, how am I supposed to make sure he gets to live a full life?  If you can’t tell me how much support Trevor will need, how am I supposed to make sure he gets that support?  And how am I supposed to prepare for this to get bad?? How am I supposed to prepare for this to end up being no big deal in the end? If you don’t tell me that, well dammit — I’ll waste his whole life fretfully expecting him to be sick and then look back and be like, “Well. That was uneventful.”

—and then… In moments of reflection this week, I’ve wanted to tell God,

“Ah.  I see what you did there.”

I am a Very Anxious person. I want to be told ahead of time, prepared, I spend far too many brain cells on the “OMGwhatif???” thoughts.  I Google obsessively over things as Big As this, or as Small As “kid’s tooth is taking too long to grow in”.
(So, guess what Thing I get to overcome in all this?)

It’s funny.  We don’t get to know.  We don’t get to plan. We don’t get to prepare and we don’t get to be reassured.

We have to just…be.

How are we supposed to make sure Trevor gets to live a full life if we don’t know how much his lifespan will be affected?   — I guess by… doing our best to make sure Trevor (and all of our kids) get to… live a full life.  Because that’s what you want for your healthy kids anyway, right?

How are we supposed to make sure he gets the support that he needs if we don’t know how much support he’s going to need?  — I guess by… supporting him (and all of our kids).  Because that’s what you do for your healthy kids anywyay, right?

How are we supposed to prepare for this to get bad, or not get bad? — I guess we just… do what we do and take it as it comes, because that’s what families with healthy kids do anyway, right?

For Jason and for me, our biggest challenge in this will not be “having a disabled kid”.  It won’t be “having a sick kid”, “having a genetic disease in the family”, or building a wheelchair-accessible home.

It will be finding peace in the unknown — the very thing we’ve been fighting against for the last two years.

I get it now— we will be the parents Trevor needs when we finally learn to just be Trevor’s parents.

 

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Written by jackie