Conversations With Julie: The Importance Of Using The Correct Scale

*This is part six of Julie’s story. The rest of her story can be found here:

part one, part two, part three, part four, part five

 

 

Julie’s story has come to an end. She’s dealt with a lot of challenges and frustration on her quest to get a diagnosis. She’s also dealt with the ongoing battle of raising kids with a non-apparent or invisible disability and having people judge her kids unfairly. As a mom, that was hard but she’s teaching her kids how to educate others about EB and how to defend themselves. They are young adults now and it’s become their battle, although she’s still on the sidelines cheering them on.

 

Using the incorrect scale

But one of the most frustrating circumstances she had to deal with was trying to understand why her kids always downplayed their pain and discomfort.  On a scale of 1 to 10 (1 being little to no pain and 10 being excruciating pain), they would always rate it as a ‘5’ or ‘6’. Yet they couldn’t walk because their feet were blistered and in pain. That in itself indicated the number should be higher. So she couldn’t fathom why they were hesitant to share their true pain level. Especially since this would provide the doctors with an accurate picture of the magnitude of their symptoms so they could treat it properly. Otherwise, how could they treat it effectively? So it was a mystery why her kids chose to scale down their pain level.

 

Then Julie was reminded her kids were born with EB. They were used to living with a certain level of pain. So their pain threshold would be different than Julie’s. Their scale would be weighted because this is all they know. It’s their normal. They don’t know what it’s like to live without pain. On their scale, a ‘5’ or ‘6’ makes sense because they’ve felt worse. On Julie’s unweighted scale, naturally, the pain level would be much higher. So Julie had to stop measuring their pain on her scale. 

 

The importance of the correct scale

This is an importance lesson. In our zeal to protect and advocate for our children it’s important we use the right scale. Using our scale to view their life will always come out unbalanced. We need to use their scale to weigh their life. We need to set aside our biases and view our children as the unique individuals they are. After all, their life doesn’t need to look like ours to be happy or meaningful.

 

Julie’s faith

In the end, it was Julie’s faith that gave her the strength to overcome whatever challenges came her way and that meant taking care of three kids with a rare skin disorder called EB. It was also what gave her the peace to thoroughly enjoy them. And if she could go back in time and tell her younger self anything, it would be that she did a phenomenal job.

 

I hope Julie’s story has encouraged you to keep asking questions, keep looking for answers and keep trusting in God through it all.