Ep. 45: The Story of Emery




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Four-year-old Emery has a slew of diagnoses under the umbrella diagnosis of Rubinstein-Taybi syndrome; Almost every one of her systems are impacted and require specialists and therapies. When she was born, Anna and her husband Justen were put under enormous strain—none of their family or friends could give them any guidance or insight into how to parent a medically-complex child. They were faced with countless appointments, tube feedings, and perplexing medical issues, all while being extremely sleep-deprived—Emery frequently wakes up at night due to pain.

In this episode, Anna and I chat about the shift that occurred in her social circles after Emery’s arrival. She shares how she and Justen quickly became aware of their flaws and had to address them to withstand the constant stress. Anna also opens up about how the ways that Emery has made her a better person overall. 

My Thoughts

Emery has given her parents Anna and Justen many gifts over the course of her four-year life.

One such gift was the opportunity to have all their flaws and weaknesses magnified more than ever because of the chronic stress and sleep deprivation they experienced because of Emery’s many medical complications.

This may be a strange thing to call a gift, but as Anna told me in episode 45, her husband and she were able to really work on those flaws and become better people and have a stronger marriage than they otherwise would have in such a short amount of time. According to her, the intense struggles have really sped up the process.

I thought this concept is so interesting.

In preparation for this interview, I listened to a previous podcast interview on the show Go Shout Love with Anna and Justen. It was a fantastic listen, and hearing the couple interact on there made me think, wow. What a perfect couple! Of course, those kinds of thoughts are often unhelpful and always untrue. It was a good reminder to me that no one has a perfect marriage. Everyone has to work on it, and there are often moments of that hard, messy work going on behind the scenes.

That openness and honesty is something I really appreciate about Anna.

We also talked about how hard it was to go from thinking she knew what her life would be like, to being thrown into a totally unknown world—none of her current friends or family could give them help or insight on what to expect. She said

“You're sure of things before you have a child with medical issues…But then when you have the child with medical issues, and you're in this different world, you have no predictability. Everything is unknown. And living there in the unknown is a scary place to be.”

Yes, it is so very scary. And that feeling of isolation and being unsure of how to proceed is amplified by rare diagnoses of which very little is known about, even by the doctors.

We also talked about the way people tend to respond to our experiences with “Well at least you have..” and, “Stay positive!” And while these are often said with the best of intentions—to cheer us up—it does quite the opposite.

I find that positivity and gratitude are uplifting and life-giving when they come from within. When they come from me. When others are telling me that my life really isn’t that bad and that I should just be grateful, it doesn’t make me feel gratitude. Instead, it makes me, and my experience, feel minimized and disrespected.

Although it is an attempt to “fix” things, it does no such thing. As Anna put it so well:

“There isn't anything that you're going to be able to do to fix the pain. You can just be there to walk through it with them.”

I love it.

That feels validating.

That feels loving and strengthening.

When I asked Anna how she had changed for the better because of her experience with Emery, she told me of the greater empathy and compassion she has.

She told me:

“I have gone through grief; I have gone through difficulties. And because I have that perspective and that experience, I'm able to relate to other people in a way that I never was before.”

I can totally relate. It is an aspect I love so much about the journey of having a medically-complex child. I both can empathize so much more readily to people going through all kinds of struggle and pain and grief. And on the flip side, I absolutely love having people in my life that can empathize with me too.

Anna is one those people for me. We don’t know each other well, but even then, I feel like I can open up to her about my weaknesses and our struggles and feel zero judgement and only compassion.

And those are the kind of people you want in your corner.

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


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