Ep. 61: The Story of Westley

 

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Summary

Westley was born with a rare case of Down syndrome—he was part of the 1% that faced several severe medical complications. Because of this, his mom Erica never fit in with the scores of other parents of children with Down syndrome. Add in a couple of rare sub-diagnoses, and it’s clear that Erica is certainly one of us.

In this episode, Erica shares a bit about Westley’s 455-day hospital stay which ended with a tough decision to switch him to comfort care and bring him home to spend the rest of his life cuddling and spending time with his three older brothers and parents. She also opens up about the complex grief she has been dealing with since his passing a few months ago, that brought both heartbreak and relief.

Westley in backpack outside with mom
Westley outside with family on a blanket
Westley with family outside in front of brick wall
Westley on a heart blanket
Westley with mom in front of couch
Westley with family on steps
Little baby Westley connected to monitors and tubes being held by mom
Westly on a blanket on the ground with family in a hospital
Westley wearing a head shaping helmet on the ground with mom
Westley sitting on moms lap
Westley being held by mom with family in the hospital
Westley outside in the woods with family
My Thoughts

Westley was the Ryan family’s “sweet surprise” in many ways.

Erica and her husband had three sons and two full-time jobs when they found out she was unexpectedly pregnant. They had already given away all of their baby stuff after deciding they were done having children, so they decided to do the 12-week genetic test just to know the gender. That way they could start stocking up on the gender-specific items they lacked.

Much to their surprise (again), the test came back with the news that Westley was a boy, and that he had an extra twenty-first chromosome—the cause for Down syndrome.

They mentally prepared themselves for the possibility of a heart defect and subsequent surgery, but that turned out to be only one of his many medical issues. Shortly after arriving home from the NICU, he was readmitted for what they hoped would be a short stay.

About 400 tumultuous, consecutive, inpatient days later, they found themselves in a care conference with all of Westley’s specialists. They were told that they had done absolutely everything they could think of and were out of options. They were to decide how they wanted to proceed.

Erica’s voice broke as she recalled:

“So, Shawn and I had to make the decision. What do we do? Like, what does this look like? We knew for a fact that if we kept him in the hospital, he would die sooner rather than later. Because hospital life is hard. And hospital life is life sucking.”

So, they decided they would choose quality over quantity. They told the medical team that they were bringing him home, and that they needed to figure out how to make that happen.

Through tears, she told me that that was the best decision they had ever made.

Although they knew he had a limited time left with them, the majority of his remaining 18 months were spent together as a family. They weaned him off of a medication that left him lethargic, and he showed more life and personality than he ever had previously.

Then, the pandemic hit and forced all six members of the family to be home a lot more than usual, and she said that it was the biggest blessing because of that time they got together.

They relished in the time they had with him.

In April of this year, he passed away.

I knew this must have left her with a complicated grief—mourning the loss of her child but also relishing in the new freedom to mother her other three sons in a way she was unable to for the previous three years.

When I asked her about it, her answer surprised me.

True to her self-proclaimed love of organizing, she told me there were two separate aspects to Westley: his medical issues, and him as a child.

Less than 12 hours after his passing, they had returned his oxygen, his gait trainer, and thrown away his medications. Because, as she put it, that wasn’t Westley. It was what brought her sadness and stress. And she couldn’t wait to be free of it.

She emotionally told me:

“I don't think that as caregivers, we give ourselves enough credit for everything we're actually doing. Because I will say, that until Westley passed away, I didn't realize how much I was doing, until it wasn't there to do anymore. Of course, we do it selflessly and we're going to do it. But just acknowledging that you are doing it on a day-to-day basis, and how much strength that takes to just pick it up is astonishing.”

I absolutely love this perspective she has and offers to us. The weight we bear in the form of our children’s medical complexities is heavy. We acclimate and adjust, but the weight remains.

Erica then told me that on the other side of the medical struggles she was happy to be free of, was her son. And in that way she is grieving and mourning his loss just as any other parent would.

They miss him so much.

Although it was easy and relieving to give away the medical equipment, she has found it difficult to part with his toys. They represented him as a child and the joyous times they shared.

Throughout his life and his death, Erica has found peace in her faith in God. She believes that there is purpose for the struggle, and that she was the right mother for Westley. Some of that purpose has already been discovered—to be discussed in her special topic episode released next week.

And she is confident that all the reasons will be revealed at some future point.

 

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