The Sibling Bond

Opal and Irish Shipley

Feeding tubes can make brothers and sisters all the more tight, so we’re told. It’s time these special relationships – in all their rivalry, fun and fierce love – got our full attention.

Iris and Opal Shipley are the finishing-each-other’s-sentences kind of sisters. At 18 and 16 years old, respectively, the duo’s banter doesn’t miss a beat – even when speaking from their separate cities in Ohio. Iris lives in Cincinnati, where she’s studying acting, while Opal is in their hometown of Columbus, applying to colleges with her heart set on medical school.

Recent years have inspired Opal’s career aspirations. In early 2020, sudden and serious illness saw her spending months in hospital, requiring years of nasal tubes and, eventually, a surgically placed gastrojejunostomy (GJ) and gastrostomy (G) tube.

The whole Shipley family – including Iris and their younger sister, now-14-year-old June – was shaken by Opal’s rapidly declining health. But even in the darkest of times, they made moments of light. Sometimes, in ways that only a sibling could.

Opal and Iris, while you two were growing up, what did family meals look like?

Opal: Our mum is a huge foodie. She has [inflammatory bowel disease] ulcerative colitis, so she has a lot of gastrointestinal (GI) issues and has always been really aware of what she feeds us. Every meal was like a plethora of nutrition. She loved – and still loves – to cook, so we would have these elaborate dinners. We have a table on both our front porch and on our back deck and we would sit around as a family, eating and talking. It was a huge point of connection.

Iris: Yeah, eating together was definitely the social hour of the day. We all do very different things. Our youngest sister is an athlete. Opal and I were always doing theatre things and our parents both work full-time jobs, so being able to have that moment we all shared was super important. And it got really difficult after everything changed.

When did things start changing?

Opal: My very first issues popped up when Covid started, in March 2020. I have something called rumination syndrome, which is a type of regurgitation that I have no control over.

When I eat, my stomach fills up with air and then basically closes itself, and all that air pushes the food out completely undigested. I have other GI issues, but that was the first thing.

I remember one day we had just eaten a family meal – it was grilled burgers – and I stood up and threw up into the bushes next to our porch. I knew something was wrong, because I didn’t feel sick. It just kept happening and happening and, by late June, I couldn’t eat anything.

We went to the hospital in early July and the doctors said, “you seem completely fine”. My mum said, “she hasn’t kept food down for about two months”. So they admitted me and, after about a week, ran a test that diagnosed me with rumination syndrome.

I then had a nasojejunal (NJ) tube placed, which I had for about 14 months. I despised it. NJs have to be done under fluoroscopy and I had so many of them. It was horrific.

Iris: I think one major thing that shifted was, before all of this happened, we would do this thing at dinner called ‘best and worst’. Each of us would say the best part of our day and the worst part of our day. And once Opal became sick, we would all have different bests, but the worsts were always the same. We were worried about Opal.

Opal: It was super abrupt when I lost my ability to eat – one day I could eat everything and the next day I could eat nothing – so the biggest struggle for me was genuine grief around not just the food, but the meals. Instead of sitting at the table, I would be laying on the couch, throwing up. And Iris is emetophobic [has a fear of vomit].

Iris: Yeah, I’m not a fan of vomit. So this was a gruelling experience for me. Opal: It was a gruelling experience for both of us.

Iris: But the continuous theme throughout all of this is that love conquers all. Do I hate vomit? Yes, but I love you.

Opal: You’ll hold my hair back now and sit with me.

Iris: Oh my gosh. If you told me a few years ago I’d have cleaned up this much vomit, I would have laughed in your face.

While this was all happening, were you being honest with each other about how you felt?

Opal: Honestly, no. When I first got sick it was peak Covid, so I couldn’t see any of my friends, I was dying and I was a tween. Lots of things were pitted against me.

Iris: It sounds like the beginning of a bad joke.

Opal: Life was a bad joke at that point. I was so angry about my situation that I found it almost impossible to express what I was actually feeling. The only person I would talk to was Iris but even then, I wouldn’t tell her much.

Iris: There was a lot of vulnerability, a lot of tears. I mean, as a young woman in society, I already have preconceived notions about food and body image. And when this became such a significant piece of our life, so quickly, it definitely made an impact on me too.

Opal and I spent a lot of time talking about our mental health and what was okay for us to talk about versus not talk about. There were topics of discussion that were sisterly love – I support you and I’m here for you – and then there’d be topics where it was like, I don’t know if it’s safe for us to talk about this, because we’re both really susceptible to this kind of issue.

What topics were off the table?

Opal: Weight was a big one. When I got super sick I lost a ton of weight all at once and I didn’t ever think about it in the right headspace. So talking about the sizes of my clothes or how much weight I had lost wasn’t good for either of us.

Iris: If anything that either of us said could be pulled out of context and used in a comparative sense, we avoided it altogether. Instead, it would be more like, let’s shoot the shit and just connect with each other to forget about all this horrible stuff that’s happening.

Opal: She’s my best friend and, genuinely, there was always support. It was just that there were certain words or details we had to avoid just to try and...

Iris: Protect each other, really. The basis of it all was that we love each other and just needed to protect each other from this evil that is modern societal expectations.

What was it like – for your whole family – when Opal first came home with a feeding tube?

Opal: It was a major adjustment, I think, for all of us. When I first came home with my nasal tube, the size for my age was a yellow-coloured tube. Our younger sister went and found a yellow piece of yarn, took a piece of my tape, put the yarn in a backpack and taped the end to her nose so we could match.

Iris: I did not do that.

Opal: June was only eight and I was like, this is kind of sweet. Then they both called me “spaghetti nose” for a while.

Iris: Being siblings is maybe one of the more unique relationships in this world. If I saw anyone else with a nasal tube, I couldn’t call them spaghetti nose. But I knew that it would cheer you up – and it did. Opal: It really did. With my nasal tube, it was like, haha, this will be gone soon! Then two years went by. Then I got my GJ tube and it was like, this thing isn’t going anywhere.

Iris: Opal and I were in high school for a year together and there was one day, while I was sitting in my classroom taking a test, that I got a call from Opal saying she was downstairs in our theatre room. She said, “Iris, my tube came out. You have to come downstairs right now!” And I was like, what?

I sprinted across this giant high school and she’s there and she’s crying and she’s having a panic attack and freaking out. I saw the tube – it had gotten caught on a student’s chair and ripped out of her stomach – and I was just aghast.

Number one, it was disgusting. Number two, I was so worried. And number three, Opal, you were just absolutely in a shambles. You couldn’t even make words come out of your mouth.

That was the moment when I was like, wow, this is really serious. But in that moment, all I felt was love for her. There was nothing else on my mind. It was like, okay, let’s call 911. Let’s call Mum and Dad. Let’s get the nurse. Let’s calm Opal down. And we did it – we fixed it. We put that tube back in so the stoma didn’t close up and got her in an ambulance and took her to the hospital. And all was well.

Opal: All was well.

For both of you, this has all been happening at a stage of life that’s typically about fun and freedom. How does that work with a feeding tube?

Opal: The first thing for me was acceptance. It was realising that this is my life and that’s okay. I might not feel great every day. I might not look my best every day. I might be throwing up for six hours some days. But you only get one life and, feeding tube or not, you can make it awesome.

I’m at the stage where you’re meant to be finding yourself, but I think that was already forced to happen when I was younger. And it’s allowed me to gain confidence, which really is the biggest thing when learning to live your life with a feeding tube and a chronic illness – learning what you need.

I know that if I’m going to go out with friends, I’m going to need to push a bunch of water down my tube. I’m going to need extra electrolytes on board and I’m going to need to bring medication with me in case I start to feel nauseous. I always carry emergency meds and syringes and extensions. Anything can become your new normal, it just takes time.

And then you have people in your life like Iris and like my boyfriend, Griffin, who will also start doing these things for you. Griffin carries Zofran [anti-nausea medication] in his wallet at all times.

Iris: For me it was about trust – letting go a little bit. When Opal was younger, it was harder. But she’s reached the age where if she doesn’t want to do something, I can’t make her do it and vice versa. So I could be worrying about, does she have this? What if she does this? What if this happens? But in reality, all I can do is trust that she’s got it.

Opal: As we’ve grown up, I’ve learned to take responsibility and confidence with the decisions that I make about my health. I still rely super-heavily on my family in every single way when it comes to my illness, but it’s gotten to a point where everybody – including me – is able to let go a little bit and take a step back. This is life with illness and not illness with a side of life. We actually get to exist.

What do your family meals look like today?

Opal: Now I eat pretty normally, so every night we have dinner together.

Iris: Minus me!

Opal: But Griffin and I went up to visit her a few weeks ago with a friend – and we had a steak.

Iris: We did, we had steak!

Opal: That said, while I have regained the ability to eat, I have not regained the ability of portion control. So I either don’t get enough food or I get a monstrous amount and then it’s on my plate, so I’m like, I have to eat this all – and I make myself sick. It’s still a learning curve. We’re almost a year into this but I am slowly getting better at it.

I think the hardest part about family meals is that it’s still a point of tension and trauma for me, my parents and my sisters. A lot of my GI conditions can be made worse by eating too fast and my parents will see me eating and they’ll be like, “Opal, slow down!” And I’m sitting there like, “I feel fine. Nothing’s wrong!”

Iris: And we’re all sitting there like, “no, you’re not!” – Shipleys are stubborn.

Opal: I lost so many of those family meals and I enjoy them so much now, I wouldn’t give them up for anything. Even if there is an occasional argument.

Looking back, what are the biggest things you’ve learned about tube-feeding?

Opal: It’s difficult, it’s really hard, it’s painful and it’s scary, but it’s magical. It ruined my life for a little bit but, overall, it gave me the chance to have a life again where I can experience the joys of being a teenager – and my sisters – and life can be good.

Iris: I don’t want to speak for anyone, but from my observations, I think a lot of siblings feel like sidekicks sometimes. And I think the truth is that we’re all superheroes. Opal and I are both superheroes. She’s been brave through some crazy stuff, but I’ve also been brave through some crazy stuff for her. The reality of it is that we are both awesome and we love each other. And that’s all that matters.

Fun-size sib chats

PAIGE (9) AND PORTIA (3), SYDNEY, AUSTRALIA

What does dinner time look like in your family?

Paige: We blend up whatever we are having for Portia. Lasagna, fish, pizza. not quiche. She’s allergic to egg.

What does it look like when you eat together?

Paige: I sit at the bench. Mummy sits on the mat with Portia and tries not to let her food get stolen by the dog.

Why does Portia have a G-tube in her tummy?

Paige: She went to the hospital for surgery because she kept pulling the nose one out.

What would happen when she pulled her nose tube out?

Paige: Sometimes Mum would think I had done it because I was closest to her.

How are things different now that Portia has her G-tube?

Paige: She’s never pulled it out. But Mum has pulled it out by accident.

What’s your advice for other kids who have a brother or sister with a new feeding tube?

Paige: If they have a nose one, watch their hands. Also, make it stand out. Don’t be afraid to show it, cos it’s cool.

Photo credit: Debi Brett Photography

ISAAC (11), HARRY (10) AND CALLUM (8), BRISBANE, AUSTRALIA

Callum, we’ll be chatting with your brothers but feel free to jump in.

Isaac: But not during our responses. That’s just rude.

Why does Callum have a G-tube?

Isaac: Because he can’t swallow water properly. And there are other reasons that I don’t know or remember.

Callum: I don’t even know the answer to this question.

Do you remember when Callum got his G-tube?

Harry: I don’t think I have a single memory where he doesn’t have his tube. In all the photos I’ve seen from Mum and Dad, he has his button.

Isaac: I’m pretty sure it got put in a week or two after his birth, so there wasn’t a lot of time that I would have been able to see him without it. It’s just normal to see him with it.

Callum: Those two were both playing on the playground outside of the hospital.

When you got your tube in? Is that where they were?

Callum: Probably.

Isaac: If anything, we’d remember, Callum.

What is the grossest thing that’s ever happened with Callum’s tube?

Harry: I know what I want to say.

Isaac: So do I, it might be the same thing. Three, two, one.

Isaac + Harry: Changing his tube.

Harry: Also once, when someone forgot to clamp it, stuff just started spilling out of his stomach. That was pretty gross.

Feeding tubes can be gross, but Callum seems pretty cool about his, yeah?

Isaac: Yeah. He might be meeting someone new and then he will just be like, “look what I have!” straight away. It’s something he shows off lots of times.

What’s your advice for other kids who have a brother or sister with a new feeding tube?

Harry: Don’t be afraid of it. Take good care of them. Be nice to them.

Isaac: Be careful around it. And make sure he or she is okay with it and help them if they're worried about it. Help them not think so much about it. Stuff like that.

Also – top thing – don’t get annoyed at them if they’re not eating quick enough or you want to leave the table but you can’t because they’re not done eating. Don’t get annoyed at them if you want them to come back and play with you, but they need to have their meds or something like that. Try to put yourself in their shoes and feel how it would be to be them.

This article was made in partnership with Avanos. For easily digestible information about tube- feeding at any age and any stage, visit TubeFed by Avanos.