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.