The Joy of Not Knowing

In our culture of Google bringing instant gratification to our curious minds, not knowing the answer or what is going to happen in life typically makes us feel anxious, unsettled. We think that knowing everything when we want to know it is the key to peace.

I don’t believe that is the case.

I write about this today as I am reflecting on March 26, 2016. We had no idea that would be our last day with Tori on this earth. Part of me wishes I had known…but, then I wonder for what purpose? So we could have treasured her more that day? We already did that well. So we could have been more “prepared” to say goodbye? We’d been preparing for fourteen months.

No, I think it’s this: Knowing would have helped us feel like we were in control of an impossible situation instead of trusting the One who actually IS in control.

I like being in control. I like when things go my way (I recently discovered that I’m an Enneagram 1 and I think I’ve accepted that 😉 ). But living like that doesn’t require faith. It doesn’t require trust. Why have faith if we’re going to just take control ourselves?

In this instance, I am certain that knowing the day and time of her final breath would NOT have brought peace. It would have brought anxiety. Instead, our sovereign and gracious God shielded us from that information and I’m so thankful. 

He was gracious to give us warning signs for about six weeks before she was set free from her earthly body. In the end, that’s all we really needed. We see that now.


Another way I’ve seen this idea of “not knowing being okay” play out is in regards to Newborn Screening.

The Pennsylvania NBS Advisory Panel has spent countless hours discussing the ethics of screening for certain diseases – ones with no treatment, specifically. They ponder whether or not it’s the right thing to tell parents that their child may someday develop a disease for which there is no treatment or cure. They wonder if they should screen for such diseases or leave it a mystery.

You may wonder why they would do that, as did I at first, but now I see it this way: if parents find out that their child will someday become symptomatic with a disease for which there is no treatment or cure, is it better for them to know (which will rob them of joy during the healthy times and fill them with worry and anxiety), or to wait until symptoms occur? They can’t change the situation either way, so for some diseases the panel believes that the ethical thing to do is to NOT screen until a treatment is available. And I believe this is the right thing to do.

Knowing doesn’t always bring peace or joy. Sometimes ignorance truly is bliss.


As followers of Jesus, we must trust the One we serve. We must trust that His way IS the best way, even if it doesn’t feel like it in the moment. He must be the source of our joy, even when things in life do not go as we would prefer.

If we TRULY believe that God is sovereign, good, gracious, faithful, trustworthy, capable, then do we actually need to know everything? No. What we need is to put our faith into action and surrender that need. Faith brings joy, deep and unwavering joy.

Someday we’ll know, and we’ll praise Him in retrospect; but, I challenge you to praise Him now, in the uncertainty, because HE is certain and HE loves you. 

The Joy of the Known

I realized recently that part of our inner joy and peace comes from the knowledge that we don’t have to wonder anymore when she will be taken from us. We don’t have to live each day wondering if it will be her last.

  
In retrospect, we can see that Tori’s brain was struggling for about six weeks before she went to Heaven. Though we rarely spoke of this, she had been having “blue episodes” every few days and the first few scared us so much. We were so panicked when they happened, as we watched her oxygen saturation drop as low as 10% at times.

She always jumped right back up to the high nineties, and she was alert and responsive even during these episodes, so we weren’t concerned about losing her soon.

Dr. Escolar was aware of these and acknowledged that Tori was in stage 4, but she wanted our next appointment to be in six months. She wasn’t concerned about losing her soon.

Yet, every time one of these episodes happened, our hearts filled with fear and dread as we wondered if this was it. Would she leave us now? Tomorrow? Months from now? We had no idea.

The unknown took its toll on our hearts and minds, even as we tried desperately to trust the Lord and His plan in those moments. 

We shed many tears during those episodes because they reminded us of her fragility.

One month before she passed away, we had blogged this post about feeling unprepared to lose her. We couldn’t even begin to imagine how we would handle losing her.

Now, we are amazed at how well God actually did prepare us without us even realizing that He was doing it. This knowledge – along with the knowledge that she is whole and healed and with Jesus – has brought us abundant joy and peace.

One of my favorite lines that I have written (it feels strange to say that!) is this: 

The joy doesn’t replace the heartache; rather, they tensely coexist each day, fighting for our undivided attention.

This is true today, as well. 

But, joy wins. Peace wins. God wins.

We will always love our girl, and we will never be the same. But, how can we not praise the One who made her, who so perfectly orchestrated her entire life and even her death? 

As He said to Job thousands of years ago, who are we to question Him? Who are we to challenge the One who knows everything and created it all? 

Just as He knows each star by name and each hair on our heads, so He also knows exactly why all of this happened and how it will unfold. We take joy in knowing that this same God loves us and will never leave us. 

Krabbe needs to be known. Every baby deserves to be tested for this wretched disease at birth so that they have a chance at life. Ignorance is NOT bliss when it comes to leukodystrophies, and we will continue to educate people so that no one else has to go through what we have gone through.

Our hearts ache to hold our beautiful daughter once more, but in the meantime, we will continue to advocate and fight in her honor to eradicate this disease from the face of the earth. It’s the least we can do.