Now What?

  • By Matthew Chambers Springible Contributor
  • Reading Time About 4 minutes
  • PostedApril 30, 2019
  • Category

Now what?

Since Jude was diagnosed ten years ago, Jordana and I have asked that question probably 1,000 times.

It’s a question that consists of two words, but is packed with the weight of a 1,000 words, and really is about 1,000 questions condensed down.

Can we do this?

How do we do this?

What if it gets worse?

What if it’s our fault?

What will the rest of our lives be like?

Will we even really have much of a life?

Will anyone really care about us?

What kind of ending does our story have?

I think, for at least a little while, I thought I could keep going at the same pre-diagnosis pace, and on the same trajectory. It felt ok at first. Behind the scenes, was the soul-crushing reality that everything had changed, but the forward-facing mask had all the trappings of a “normal” happy life.

For some reason, humans are notorious for pretending. What’s worse, when you pretend long enough, you begin to trust the make-believe over the reality. As the French Absurdist philosopher and poet, Albert Camus wrote, “Man is the only creature who refuses to be what he is.”

But, if ever there was a concrete block to the helium balloon of pretending, it’s a diagnosis with no end. Because no matter how much pretending I did, that everything was fine, and all we’d need do was keep calm and carry on, that was not and never would be reality. Carry on, yes, but our moon was now orbiting a strange new planet, and it felt light years away from anything and everything that we’d come to safely rely on for comfort and routine. So, back to the questions…

Now what?

Well, now we make sure Jude somehow gets what he needs for stability. Now, we find the doctors who don’t make us feel like we’re adrift without a lifeline. Now, we (or mostly I) stop pretending.

Can we do this?

It doesn’t matter now. We must. We will.

How do we do this?

However we find a way. We’ll rearrange our entire lives for this. Jude will have whatever he needs, when he needs it, no matter what.

What if he gets worse?

Then we face that as it happens, and we figure it out just like we always do.

What if it’s our fault?

Blame and guilt are a dangerous game to play. The more we focus on them, the less we will focus on the most important reality right now: Jude.

What will the rest of our lives be like?

Probably like this – never quite having the answers we desperately seek, or the solutions we need, but never quitting. We have a very sick little boy who relies on us for absolutely everything, and the rest of our lives will have to simply unfold in the midst of this, not in-spite of it.

Will we even really have much of a life?

Our previous plans and expectations will have to be set aside, potentially indefinitely, and something new will emerge. It will leave us marked and changed, but, just like everything else, we’ll figure it out as we go. Life isn’t about expectations, it’s about finding a way to make the journey as well as you can.

Will anyone really care about us?

This question has probably been the hardest to answer, mostly because it’s not really up to us. Some have disappeared from our lives completely over time, some have stayed, and that’s just how it is. Our life is complicated, and doesn’t lend itself to consistent community or friendships, so on one hand we understand when people aren’t around any longer, on the other hand it’s something especially Jordana craves each day. I hope, especially for her sake, that one day soon it will be a constant.

What kind of ending does our story have?

Jude’s Tuberous Scleroris diagnosis abruptly changed our entire family course and trajectory. The ending seems near and very far all the time, at least to me. Who knows how it ends? All I know for sure is, we will make it to the end together. I don’t say that defiantly, and I’m not even defining together, but I am saying that Jude trusts that every morning we will show up for him. It’s the one thing he knows for sure, and it’s the one thing we’ve committed to all the way.

This is why we dropped every local medical connection we had, and found a way to get Jude to see the neurology team at Cincinnati Children’s Hospital. Through research, Jordana found that they were the number one clinic in the world for Jude’s disorder. They were the team who wrote the books, and were leading the research. They were a lighthouse in the midst of a very dark sea.

So, we found a way, and packed up for Cincinnati. We’d been drenched in despair for so long, it was time to remember what hope felt like.

Read the previous post in this series here!

Love…Bleeds Willingly and Joyfully

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