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Finding Hope After Defeat and Preparing to Break Down Doors

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Following seizures and an MRI, our daughter was given an early diagnosis of leukodystrophy, a terminal brain disorder. We applied to participate in a study of DNA related to leukodystrophy at CHOP, and had to wait a few weeks for their team to review her MRI and clinical notes from our local hospital before being enrolled in the study.

After what felt like an eternity, we finally found out we got into the study! We had prayed for this, our tribe had prayed for this, and we got in. Such joyous news… but it came bittersweet.

About two weeks prior, I got a phone call from the contact person with the study. They told me that they were “tentatively” accepting us — but there was a condition.

The doctor saw something in the MRI that made her suspicious of a possible misdiagnosis — she thought the white matter abnormalities may have been caused by a virus called CMV.  I could have had it while pregnant, and it has mild flu-like symptoms.

This can be tested with a simple blood test, and while it is still brain damage, it is not progressive and not fatal.

I don’t know if I cried harder the day we got her diagnosis or after that phone call, all at the thought of the possibility of hope — of a miracle.

And so our prayers changed, and we pleaded for this to be true. We started researching, and so many of her symptoms aligned with CMV. I knew this was it… I mean really, truly knew it. We got Adelyn’s blood drawn and started the wait for the results. And we didn’t tell anyone. Because hope is so good, but it’s also pretty damn scary.

We got the results about a week later that Adelyn tested negative for CMV. And with that, we were in the study.

I was crushed. I felt like I had finally started to find my strength before, and now I was suddenly back to the teeny tiny person I was a month ago.

Being in the study was exactly what we thought we wanted. This should have been good news — and it was — but it didn’t bring the elation we expected.

I’ve had a lot of people telling me I’m strong lately — but I’m just as strong and as weak as all of us are in times of adversity. In this moment, I was weak. And I was sad. And I was angry.

And in my weakness, tiny me yelled to Mike, “This. This is why I didn’t want to have hope. This is what I was afraid of. It hurts so much. All. Over. Again.”

But the crux of it is this — you can’t not have hope. There are risks in having hope, but the risks of losing hope are so much greater. And Mike reminded me that hope is a lot like love. Opening yourself up to it makes you vulnerable, but if you don’t, there is so so much beauty and wonder you will miss out on.

Do not be afraid — I am with you!
I am your God — let nothing terrify you!
I will make you strong and help you;
I will protect you and save you.
(Isaiah 41:10)

And I have to say, the hope I let enter me… it crushed me in the moment, yes, but it also changed me.

I’m embarrassed to admit I had taken defeat with our initial diagnosis. Yes, I love her. Yes, I will do anything to help her and protect her. But she has leukodystrophy, and it is progressive, and it is fatal. That’s it.

When we told our Pastor the news of her diagnosis and asked for prayers from the church, his response included these words: “We will be sure to celebrate the gift she has been, the gift that she is, and the gift she always will be — leukodystrophy be damned. Nothing will ever change the fact that Adelyn is a beloved child of God.”

I was touched at his words, and cried reading them. But I wasn’t quite ready for them yet. Because at the time, leukodystrophy had damned me — not the other way around.

I think I needed that moment of “false” hope to remind me I need to have hope. Leukodystrophy only damns me as much as I let it.

We decide what controls our lives.

We decide what actions to take day in and day out.

We decide what thoughts we choose to entertain.

And now I’m ready. Leukodystrophy be damned. And as long as we remember that we have the power to control how we react to our own personal plights, we will always win. The outcome doesn’t affect that truth.

Maybe she’ll beat the odds, and maybe she won’t, but we will give her the best life imaginable. And we will fight with every ounce of our willpower, and we will think positive thoughts. And in that…




We will seek new treatments, explore every avenue that is open to us, and find the ones that are closed and break down the doors. I don’t know what the outcome will be. I don’t know what her future — our future — looks like.

But I have hope.

This post was originally published on Let’s Make a Little Deal.

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Getty Images photo by Andrii Oleksiienko

Originally published: November 24, 2017
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