Everyday Miracles
Photography by Samantha Allyson Photography
How do we teach the world that tube-feeding is normal? By showing the world that tube-feeding is normal. And with two tube-feeding daughters and an online community of more than a million, Shannon Willardson is doing just this
WORDS // MELANIE DIMMITT
Not long after two-year-old Charlotte Willardson started feeding with a gastrostomy (G) tube, her mother, Shannon, received an SOS text from their babysitter.
“She said that Charlie’s tube had come out. And I’m like, ‘okay, which tube?’ Because if it’s just the extension set, no big deal, right? But she sends me a picture and it’s the entire button.”
Shannon had been touring a local school – one that specialises in supporting children with complex needs. Charlie has a very rare genetic condition which means she needs help to eat and drink, which is why she has a G-tube. A G-tube that, just weeks after being placed, had caught on the side of her crib and popped right out.
“I was like, ‘oh my gosh, okay’,” says Shannon from her family home in Boise, Idaho, recalling the day that saw her rushing Charlie to hospital, having her tube professionally placed for a second time. “I told the lady who was doing the school tour, ‘I’m really sorry. I have an emergency and I have to go!’ It was crazy.”
Nowadays, in far less dramatic fashion, Shannon replaces eight-year-old Charlie’s G-tube herself. She does the same for her six- year-old daughter, Ava, who shares Charlie’s genetic condition.
A former real estate agent and program manager at LinkedIn, since becoming a mother, Shannon’s skill set has substantially diversified.
“Speaking to my husband, I always threaten that I’m going to go to med school,” laughs Shannon. “Medical parents all deserve honorary nursing degrees and especially since having our girls, I’ve become so fascinated and interested in all the medical aspects of their care, so I don’t mind changing the girls’ G-tube buttons. In another life, I think I would have pursued something in the medical field. And this way, I’m getting to do it every day.”
Alongside her daughters, husband, Chase, and their 10-year-old son, Jack, Shannon shares moments from her family life across the social media channels she’s been growing since launching her lifestyle blog, For the Love, in 2012.
Today, more than a million followers see what this bunch gets up to – wheelchair wrangling, feeding-pump beeping and syringe washing included.
“Our biggest hope with what we share is, firstly, just to normalise it," says Shannon. “When people see the whole family doing dinner – and for the girls, that means we’re hooking them up to their feeds – my hope is just to normalise that, yes, they eat dinner a different way. And that’s okay. That’s great.”
Shannon also shares in the spirit of supporting her former self – those parents who are new to a life they never expected.
“I think it can be really empowering and comforting, especially at the beginning, to see other families who are in a similar situation and still living full, happy lives,” she says. “I’m not talking about toxic positivity. It’s not like we’re happy all the time or everything goes smoothly, we’re just normal people. Is our life different from what we envisioned? Yes, but it’s still full and beautiful and happy and thriving.”
Shannon’s feelings around her girls needing to tube-feed have vastly evolved since the notion was first suggested to her for baby Charlie, who seemed to nurse with no issue until she was four months old and started losing weight.
“We thought maybe I had lost some of my milk or there was an allergy situation going on, so we switched to a hypoallergenic formula at that point – and this was still all by mouth,” says Shannon. “But then she started presenting with other complications. She started having infantile spasms at around five months and this is when we realised, okay, something is really wrong.”
Around the time Charlie turned one, she was diagnosed with a rare, inherited genetic condition under the umbrella of congenital disorders of glycosylation, called CDG-1p (ALG11-1p). Then came months of working on eating orally, “even just a little bit”, with an occupational therapist and speech and swallow therapist.
“I was very resistant to the idea of a feeding tube,” says Shannon. “Whether it was conscious or subconscious, it felt like an admission, or submission, to her being really unwell. That’s what it equated to in my mind – she’s not in a good place, she’s really medically complex, she’s not healthy. I don’t know how many gastroenterologist appointments we had where they were nudging us in that direction and I was like, ‘no, no, no, let’s keep trying’.”
Things changed when a swallow study revealed that Charlie was silently aspirating and taking food and drink into her lungs.
“We were putting her health in jeopardy by pushing this any further – and once we had her G-tube I was like, oh my gosh, why did we wait so long to do this?” says Shannon. “She was a totally different kid once she was nourished properly. Then with our second daughter, Ava, honestly, I could not wait to get her G-tube placed.”
Ava was, as Shannon puts it, a surprise. After learning of Charlie’s condition, Shannon and Chase decided to grow their family through IVF and had started the process when, despite being on contraceptives, Shannon discovered she was pregnant.
“I called our geneticist even before I called my husband to tell him,” says Shannon. “When we got tested and found out that this baby had the diagnosis – I feel shame in admitting this, in hindsight – I was devastated. I remember thinking and sometimes even saying, ‘can you imagine having two kids with these medical complexities?’ – and there we were. It felt like we were being punked.”
The Willardsons are a family of faith, so Shannon spent her pregnancy with Ava praying for a miracle.
“I know she could have been healed if that was God’s plan for our family, but she wasn’t, which tells me that wasn’t the plan,” says Shannon.
“And I remember so poignantly, when Ava was born, that feeling of being devastated was just gone. Once she was in my arms, I instantly felt that love you feel for your kids – that crazy love – and I knew everything was going to be fine.
“Don’t get me wrong. It’s not like I never have moments, with both of my daughters, where I get those little twinges of sadness about what I thought their life would be. I don’t think you need to feel shame about that as a parent of a medically complex kiddo. But it was such a beautiful thing to experience with Ava, where I was so devastated about her diagnosis during the pregnancy and then, once she was in my arms, that feeling just dissipated and was replaced with overwhelming love.”
Ava, like her sister, now has four bolus feeds of formula each day and doesn’t seem at all bothered by not eating orally.
“Neither of the girls have ever shown interest in food,” says Shannon. “We’ve really tried to get equipment that allows them to come to the table and easily be a part of shared meals. They are extremely social and very aware of people being around them. Charlie, especially, has FOMO [fear of missing out]. If you leave the room and she’s not with you, she’ll start whining like, ‘hello? Bring me with you!’”
Charlie and Ava both “light up” when their brother, Jack, is around – and things are about to get a whole lot more socially stimulating in the Willardson household. In recent months, Shannon’s social media feeds have followed her family’s journey with surrogacy and, around the time this magazine is published, they’ll welcome twins.
“I grew up in a big family – with six siblings – and it was total chaos but I loved it,” says Shannon, when asked how she’s feeling about mothering a brood of five. "My dad’s job caused him to travel a lot and so my mum was doing it solo a lot of the time and she just made it happen. My mum was just a boss, so I’ve probably got a little bit of delusional confidence because of what I was exposed to as a kid.”
She’s also got help. Much like in Shannon’s childhood home, Chase’s work often sees him travelling while she solo-parents – all while creating content and running her own wellness and supplement business, All That Nutrition.
As Shannon shares with her followers, “we would basically be screwed if it wasn’t for our unicorn nanny and our support system” – which she’ll be expanding once the twins arrive.
“I’m under no illusion that it’s not going to be really hard in a lot of ways, or that we won’t have moments where we’re like, oh my gosh, we really are in over our heads now. I’m anticipating all of that but we’re going to take it as it comes and we’re going to hire more help and figure it out,” says Shannon.
“I think every parent has moments where they feel like they’re drowning and struggling to manage everything going on in their life. And while having more kids will be an adjustment, especially at first, Chase and I know that we’ll figure out how to make it all work and it will be great! I think the part I’m most looking forward to is just more people to love on those girls, you know? There’s just so much that is beautiful and singular about life with them and I feel excited to bring more kiddos into that.”