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July 8, 2024

Rays of Hope: Aubree, Ryan, & Jackson, Part 2

In part 2 of our interview with Aubree and Ryan — check out part 1 here — we discuss tips to make hospital visits more manageable, the importance of choice for kids with medical complexities, and how Gus Gear has been a lifesaver for their son, Jackson!

Q&A With Aubree and Ryan

Tips to Make Hospital Visits More Manageable 

Amy Braglia-Tarpey: Well, shifting gears, as you think about it, what tips would you give other parents to make hospital visits or medical procedures more manageable?

Aubree Midgett: I think my number one thing is to be informed. To make sure they know they have the right, the ability to ask questions and get information to understand what’s happening. And also to give themselves grace. There’s a lot of times I’ve had to give myself grace to have the fear, the anger, the frustration. Also, to find the joy. A lot of the time as parents we go through this and feel like we can’t help them. It’s a very helpless feeling. And making sure we understand that’s OK to feel that. You have to give yourself grace and not beat yourself up over the process and just really kind of go with the flow too. 

We’ve done a lot of things with Child Life. If there’s something he particularly likes that day we will do that. Just finding a niche for your child and a niche for you and how that coping can be brought into the hospital to help make things easier.

What do you think?

Ryan Midgett: I think all of that. Now that Jackson is a little bit older, keeping him informed on why we’re doing things, what that means for him, what the benefit is so that he understands what’s going on, I think that’s been really helpful for us.

AM: And choice. Choice is a huge thing for them. His dressing changes for instance; he knows they’re non-negotiable, but do you want them now, do you want them at a different time within the same day when it’s due obviously. We try to bring choice. In this world, for everyone, there’s a loss of control — it feels like a loss of control quite often — and I think finding those things where you can give control or you can feel as if you’ve settled into controlling something, whether it be if they choose this or this, or I can take this stuffie to the operating room. Just the little things. I can wear this gown or this gown. And just making them understand that they kind of have some power when there is a feeling of loss of power or loss of control.

RM: And you’ll find when you open up that conversation that they start telling you things, little things you can do to make them more comfortable that you never would have thought of, because they now understand that they have a voice and if they use that voice they can get some things that make them more comfortable. 

AM: Like him in particular, he will tell them, “I want to move myself to the table.” So they will bring him into the operating room and he wants to move himself to the table. He wants to have an understanding of which mask to wear. So he’s really been able to voice to his providers and bring up, “This is what I prefer;” “This is what I want for my life.” And we’ve, especially in the palliative care realm, respected that as parents. I think it’s hard, but as he has gained more understanding and ability to speak it’s been freeing for him as well. 

“You’re Doing a Good Job”

ABT: That’s wonderful. It sounds like you’re really fostering a lot of autonomy that will serve him well as he goes through the rest of his journey. Do you have any words of support for other parents or caregivers of children with medical complexities?

AM: You’re doing a good job. Of course—I was like, I’m not going to cry. It’s lonely. It’s hard, because it feels like nobody else understands. Or nobody else can walk in this world with you sometimes. And it’s alienating from friends and family. And really finding your village and people that can be there behind you. And for people to know that there’s other people out there like us who are there. We understand. We get it. And just know you’re doing a great job. Keep doing the best you can, even when you’re in the trenches. I know it’s hard, but there is always that silver lining or that piece that is going to shine through. What do you think?

RM: I think that’s perfect. Just try to find joy in each day. There’s always something beautiful going on, and just latch on to that, persevere, and just know that you can do it.

AM: We always try to find the positives in the valleys.

Positive Work by Organizations and Groups 

ABT: Great words of wisdom. You certainly are in a unique situation that most people have difficulty understanding, so those are great words of wisdom. Are there any organizations or groups — like support groups or disease specific groups or foundations — that have made a positive impact on your journey?

AM: So, we have some local organizations. We use hospice—Edmarc. They have supported our family for five years, maybe it’s six now. They are amazing. There’s actually a new organization as well that a friend of mine started called The Apricity Hope, and she actually has this beautiful pink house where she hosts retreats for medical caregivers, and she’s had people from all over the country come to these retreats and they just really embody the flamingo. So, when the flamingo feeds their baby, they turn gray, because they’re giving of themselves. And her theme is to bring back your pink, so to kind of give back to yourself. And they’ve been wonderful. So those are some local organizations that have really had a positive impact on our journey. Is there anyone else you can think of? I mean, just our social workers throughout different hospital systems. 

RM: Child Life, like you mentioned, has been a lifesaver. 

AM: Gus Gear is great! I’ve actually used you all in a few of my papers; I’m going back for an MSW right now, so I’ve actually used some of the way that Sarah presents literature and talks about the Oley Foundation — we’ve used them as well for some things. So I think those are some really good support groups that we’ve found and just kind of finding other people that understand where you’re at and that you’re not alone.

ABT: That’s great. Those are all great resources. I particularly love you calling out the medical retreat because so often the focus, when a child has a chronic condition, is on the kid. And the parents have very little support, so I think that’s wonderful. 

AM: And it’s a really good concept. She’s only been going for about a year, but turning it and focusing on the caregiver I think is a rarity. It’s usually, like you said, focused on let’s bring in help for the child. But I feel like the caregiver is sometimes, not on purpose but inadvertently left behind. But the understanding that the caregivers are going through it just as much as the child. And we have three kids, and all three of them are medically complex. So, yeah, it’s a lot.

ABT: That is a lot, it really is. That kind of segways into my next question—What do you know now that you wish you’d known at the beginning of your journey? And maybe this even starts with your other kids.

“You Have the Right to Advocate”

AM: See that one is a hard one, because I don’t think I would necessarily change how the journey went, but I would look back at that scared parent and say, “You have the right to advocate. You have the right to ask questions, to speak up, to challenge.” And not in a combative way or a disrespectful way. I just know that through this journey there’s been a lot of questioning and understanding and going back and forth: Is this the right choice for my child? Is this the best thing to do for my child—because these are life-altering decisions for these children—and really being able to know that I’m OK to ask, “Why are we doing this? Is this helpful? What is the long term trajectory for this?” As caregivers, and especially when I first started this journey, I was just terrified. It was overwhelming. But asking and educating myself… Really what I wish I could have known is to do that and push for education. What do you think?

RM: I mean it’s tough because we still don’t know so much about what Jackson has, so from his medical care, there’s not things that we wish we knew sooner. I really think just advocating for your family be it the kid at the hospital or the kids at home. I think that’s the thing that we had to learn the most along the way.

AM: And remembering the siblings are going along with it.

ABT: Yeah, thank you for bringing that up — remembering the siblings are going along with it. I don’t think that gets enough attention either. What are some of your hopes for Jackson?

AM: My biggest hope for him is to just be a kid. Quality of life, experience, and not let his medical situation hold him back for as long as we’re allowed or gifted to have that ability. 

RM: We’ve got some trips that he wants to do and just try and experience those things with him and take the whole family along and make lots of memories.

AM: I had a doctor say to me once, “Do you want to look back at your journey and look back at the medicalization and medical trauma or do you want to look back at the memories and the experiences?” And that really shifted my viewpoint. The medical aspects have to be there but you can also look at the experiences and the beauty in it and make the memories that aren’t necessarily related to what affects their life medically. I think that was really a game changer for us.

3 Words to Describe Gus Gear

ABT: On a more lighthearted note, do you have three words you would use to describe Gus Gear.

AM: I’d say, “Helpful,” in more ways than one. Not only with the products but the advocacy and the understanding. I would also say “Hope” because for us it's hope that everything is going to kind of stay calm. We know that his line is protected, that there’s no situation going on and… What do you think?

RM: …Fashionable? He loves them!

AM: I love it. He does, he does. He thinks it’s part of his fashion statement. You’re not wrong. I love that, I love that. He will say, “Mom, it needs to be on.” And he will just hang out in it and think he’s the coolest little thing. He cracks me up.

ABT: I love that, especially because Sarah — our founder — really wanted to give kids the opportunity to have a choice of the fabric and things like that. It just goes to show that having those choices is really helpful and can really help a kid to feel like themselves. 

AM: Yep.

ABT: Well, Aubree, Ryan, thank you so much. This has just been fantastic. Thank you for sharing your journey and opening up. We hope it will help others. 

AM: Absolutely. Thank you so much. We appreciate the opportunity. 

RM: Yes, thank you.

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