In Lesa’s Words: One Year Ago

Brennan and I both took time to write down our thoughts and memories about how we felt one year ago. We also wrote about how we feel and what our perspective is today. 

This is the second of three posts to come as we near diagnosis day. 

Here is Lesa’s heart about last year…


Diagnosis Day…

In some respects,  it feels like yesterday. And others, it feels worlds away. 

February 13, 2015.

Yes, it was indeed a Friday.

We weren’t expecting to get Tori’s bloodwork results for a couple of weeks, and they had just sent it in the day before. 

So, imagine our surprise when we received a phone call from neurology asking if we wanted to come in for the results. 

When the neurologist came in to talk to us, we knew immediately that this wasn’t something that could be easily fixed. 

She was in plain clothes, not her typical white robe. She wasn’t supposed to be at work that day. She wasn’t smiling, but was rather somber. She walked in, shook our hands, and said the most terrible words we could have heard: “It’s Krabbe.” 

We had heard about that disease from the  ophthalmologist earlier that week, who said “If it’s Krabbe, the vision usually goes first.” 

We had briefly Googled leukodystrophies and saw that one on the list. 

We knew that word meant certain death.

I will never forget looking over at Brennan, who was holding Tori tightly, as those words were spoken. The pain in his eyes was tangible as he asked the question we both wanted to ask but neither wanted to know the answer: “How long does she have?”

The kind doctor was gentle and said she couldn’t say for sure and that there are many forms of Krabbe. Further genetic testing would be required. She explained the genetics of Krabbe – that both parents have to carry the defective gene in order for a child to get it. 

She also gently added that we might want to reconsider trying to have more children given the odds of Krabbe appearing in any of our future children (25% chance per pregnancy). 

That was a lot to process in one day.

We were devastated beyond words. Hopeless. Knowing she was given such a grim outlook left us numb. The doctor gave us a few minutes by ourselves and we wept together, clinging to our bright-eyed, beautiful, precious daughter who we now knew was dying. 

Dying is not a word that should describe anyone’s six month old child. 

I remember feeling despair and being in utter disbelief that my world was being shattered into a million pieces.

I remember desperately pleading with the Lord to save our daughter, the one for whom we had prayed for so long.

Desperation is the perfect word to describe how I felt. I didn’t want to lose Tori and I was willing to do anything to keep her here. I was desperate to wake up from a nightmare that had only begun. 

When we went home, we cried and cried. I sat in disbelief for what seems like hours, holding and rocking Tori so tightly, never wanting to let her go.

It was the beginning of an unexpected and unwanted journey, and we were afraid.


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