Meet Shannon

Have you ever met someone who puts you totally at ease? In whose presence you feel completely accepted? That’s my friend Shannon Walsh. You can simply come as you are with Shannon, be your true self. You should also know that Shannon is notably humble and persevering. And the truth is, Shannon’s journey hasn’t been the easiest in recent years. She and her husband Jon are parents to Bella (age seven-and-a-half) and Toby. They are also Landon’s parents. Landon had a rare genetic disorder and passed away at the age of 7 months. Toby has the same disorder and has beaten the odds; he is now 2-years-old.

Shannon teaches me a lot: How to see life from an eternal perspective, how to persevere in the midst of struggle, and how to somehow be open and trusting enough to allow trials to teach you something. She has a great capacity for hope, for love, for compassion. These things that have made a home in Shannon’s heart and soul are stronger than the suffering and loss she’s gone through. They have miraculously survived amidst trials and have even been honed and deepened. I think you’ll see what I mean.

THE INTERVIEW:

Melissa: So, how do you define beauty?

Shannon: So, I've never been asked that question before. I feel like I had an easy time answering all the other questions, but that was hard for me. We are headed into a season of shiny and bright, brand new and colorful things this Christmas season and don’t get me wrong, I love all those things. I got twinkling lights this year to decorate with and I am all about it but I think it can also come out of suffering and loss. One thing that came to mind was “beauty from ashes.” That phrase. And then I was looking it up…I Googled it first. I'm so terrible. If I wanna look up a verse, instead of going to the Bible, I'm Googling. Just so I can kind of get a reference, but I did look in the Bible too.

So it was Isaiah 61:3 and it says, "and to provide for those who grieve in Zion, to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor."

From what I Googled (she laughs), it said that “the line ‘a crown of beauty of instead of ashes’ refers to a practice of mourning. After the death of a family member or during great tragedies and trials, the Israelites would cover themselves with ashes to show their sorrow and repentance. God promises that one day, they will no longer mourn for all they have lost and get a crown of beauty.” For me, I think the real beauty is yet to come. The crown of beauty.

But I was thinking, every time now I go to the hospital I think some of the hardest things we've gone through have lead to the most beautiful relationships or things we've learned. Some of the beauty I have seen in this world have come from some of the hardest things we have had to go through as a family.

I was thinking too, some of the most influential people to me have been people that I've met through…like fellow parents or staff. I still talk to Landon's nurses. Not very often, but like on Facebook they'll check in with me and stuff. And that wouldn't have happened had we not gone through some of the hardest things. Does that makes sense?

Melissa: Yes. That's really cool and it's neat how God can transform some of those things that..

Shannon: Mm-hmm (affirmative). And I just love how He promises this isn't forever. And those promises are kind of what keeps me going. Especially if there's like a surgery or something [or I’m feeling] really anxious, His promises are the only things that really kept me going. Gave me some glimpse of hope. That and all the things to help me get through, but ... Yeah, His promises mean a lot.

Melissa: This is not in here, but just my own curiosity.

Shannon: Yeah?

Melissa: I can't help but ask, are there a couple that come to mind? A couple of the promises that were just really your foundation throughout all that's been going on?

Shannon: Yeah. So I think the main one was that He promises to never leave us or forsake us. And I think when you go through a lot of loss, just knowing that He's not leaving. I might lose people really close to me, but He promises to be there through it all. And one day we will be in Heaven and no more tears, no more sadness, no suffering.

Melissa: Thank you. So, where then do you see beauty in the world?

Shannon: In my daughter and son's faces. I found out I was pregnant with my daughter a year after my mom passed away from cancer. So, just the timing of that. She's just been a gift ever since. She's shown me how to have joy amidst sorrow. She has brown eyes and is reserved like me. And straight hair and not a fan of surprises like her daddy. And I'm just surprised how we're created that way. To carry traits from our parents, but entirely our own person too.

And then Toby might look different than what is considered by the world’s standard for beauty; he does have blonde hair and blue eyes like his daddy but some of his deformities include that his ears are lower than normal, he has a small chin, and we aren’t really sure what his vision is.

But, man, I live for his smile and we do just about anything to get him to smile because it brings so much joy. We didn’t really know if he would be able to, given how his brain is wired or formed, so we feel like it is such a gift to see him do that everyday. And even laugh a little. Like in his own way. Not like a full on giggle, but he definitely can laugh. So, it's been special to us.

Melissa: That’s so good.

So, the next question is about brokenness. Can you tell me about the brokenness you're experiencing in life or that you have experienced?

Shannon: I’ve experienced a lot of death and loss and as my therapist would say - trauma. At times it can be overwhelming when I think about what it’s been like these past few years but it’s a part of our story and [has] made me stronger in my faith and [helped me] learn to cherish what matters or lasts because of it.

I lost my mom shortly after getting married, and as a result my brother came and lived with us when he was 15 for a couple of years. We had our first daughter Bella and, shortly after, we had Landon, our first son who we would eventually find out had monosomy 6, trisomy 18. Not much hope was given with this diagnosis and most babies don’t make it full term. Landon lived 7 months, most of that in the hospital.

We suffered a miscarriage a couple years after that and then got pregnant with our son Toby, who was also diagnosed with monosomy 6, trisomy 18 after our 20 week ultrasound. Toby spent some time in the NICU and then was sent home on hospice. We didn’t expect to have much time with him, as was the case with his brother. But he has defied all odds and is now 2 years old.

To be honest, it’s been very tough on our marriage and has produced some anxiety and worry in our daughter. But with a lot of love, our faith, therapy, and with modern medicine, we have been able to survive. I don’t mean to try and wrap it all up in a bow, and I can definitely throw a pity party with the best of them, but I’m here to say that you can walk hand in hand with joy and sorrow.

And all these hardships have made us not worry about the little things and [have] gratitude for what we have, instead of bitterness for what we don’t have.

And then what was the other question again?

Melissa: Where have you seen beauty in the midst of that brokenness?

Shannon: When you experience loss, it can change drastically change your perspective on the world, hopefully for good, but I know for us it definitely has loosened our grip on the things here on earth and focused our vision upward towards heaven.

And, going back again on forming those relationships that we would never [have] cross[ed] paths with those people in the hospital or, you know, anyone…patients, staff… Toby's pediatrician has become a good friend of ours. We think very highly of him and he always tells us, "Don't hesitate to call anytime Toby goes in." So that never would have happened.

And also it's opened a lot of conversations to talk with Bella, for sure after Landon passed…about Heaven and what it means, accepting Jesus into your heart and she actually became a Christian or asked Jesus into her heart when she was maybe three, maybe two and a half. Because she was so curious…we would talk about Landon so much and about Heaven. I feel like those conversations opened up the door for her to want to make that decision. And I think, as a parent, that's your biggest hope and dream is that your kids would know Jesus the way you do. And all be in heaven one day. Yeah, so that's been a huge one for us.

Melissa: Yes, the relationships and then the opportunities for conversations with Bella.

Shannon: Yeah. And it's made us more compassionate and just look outside ourselves too. Last summer, we were in there for like three weeks, at the hospital for Toby, and I think we were taking Toby around. You can kind of make rounds on the floor. So, as we were doing that, a mom came to Bella and was like, "Thank you so much for that picture. We put it up and my daughter loves it." And I was like, first of all who is this and how does she know my daughter? But I think she had met them in the playroom where they have volunteers and I think she had ... Her big thing is, when Toby's hospitalized, she likes to draw or make something to put up in his room. And she thought they should have something too. So she just drew a picture of…I don't know if it was some Disney princess or something.

So, that just made me realize just like God's working with us and teaching us things, He's teaching her to have compassion and to love others too or look outside of herself. So yeah, that's been neat to see too.

Melissa: So the next question is about lies about beauty. What lies about beauty have you experienced in your life would you say?

Shannon: I know with each of my pregnancies I always hoped for the best and just wanted a “normal pregnancy” that would produce a “healthy baby.” It’s something you hear a lot when couples are getting close to that 20-week ultrasound when they find out what they are having or getting close to delivering …“I just want the baby to be healthy”.

But what about when they are not? Is there still a place for my child in the world? Are they still gonna be loved? As a parent, some of my deepest desires are for my children to know and love God, know they are loved, and know that their lives had a purpose.

We love our kids no matter what, but how's that kind of… I feel like people with disabilities, not that you get shunned, but it can be a hard way to make a place in the world. Just trying to navigate that, that every child matters and is a gift from God. No matter what they were born with or without. So yeah, that's been eye-opening.

Melissa: Yes. That makes sense.

So, the last question is have you had any experiences that have transformed your ideas around beauty?

Shannon: Yeah. I think it was hard ... I'm such an introvert too. You know, now that I'm older and have a family and stuff, I just want to have family at home and just keep everybody out. For sure I was when I had Landon. I just want people to go away and not have all these people coming in and out. Then when we had Toby, same thing. We've got multiple people coming. Each week I’ve got someone coming at 1:30, a nurse, to do a check on him.

So at first it took a long time to get used to that. But again, it's formed relationships. They've really learned to love Toby and I feel like they get so much out of those relationships with him too. Bringing birthday gifts. They'll visit him in the hospital if he's there. So those things wouldn't have happened had we not gone through some of that stuff.

Some of the hardest things we have gone through have produced some of the most beautiful relationships and friendships.

I often think that when we are in the hospital or have our weekly home visits with the nurses and staff that we would never have crossed paths or formed these relationships had it not been for having a child born with disabilities or put in hospice. It’s taught me to look around and see what God is teaching me or simply just showing his love for me with the people he places in our lives.

Melissa: Yeah. So seeing beauty in relationships…unexpected relationships.

Shannon: Yes, unexpected, yeah. Never would have happened had we not have a child in hospice and disabilities.

Melissa: Lastly, I like to ask if there is there anything else, coming into today and thinking about the idea of beauty, that you want to name or mention before we wrap it up?

Shannon: I feel like we notice things, just like simple things more, regarding beauty. Like we went and got a Christmas tree last weekend. And just being out in a tree farm, everything smells so good and just being able to do that. I feel like we appreciate the simple beauty or the natural beauty around us, versus if we were kind of zoned in on our to-do list or whatever.

This last hospital stay, Toby was actually scheduled to go to Crescent Cove, a home that has respite options for families. So kids can go stay for a weekend with nurses and staff while parents can get a break. He was supposed to do that and instead he was sick in the hospital. So we kind of had to change expectations and plans… Bella [was going to do] a sleepover, we were gonna try and do a date night. So, things can happen in an instant. We have had to learn to roll with the punches. We can make plans, but that's not guaranteed. And just to be grateful for what we do get to do. So I feel like there's a lot of beauty in that.

Melissa: Yeah, appreciating what is.

Shannon: Yeah. Where you are right now.

Are you tired of being sold a broken brand of beauty?

The brand of beauty we are so often sold as women is way too small. It divides and dis-integrates us. I am on a mission to expand and re-discover beauty, authentic beauty. I believe beauty is the life of God at work in us and among us. Will you join me in exploring that kind of beauty?

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