When you think of a newborn baby you think of soft, cotton white sleep-suits and cuddly elephant toys. The term “pediatric dysphagia” had never entered our mind, let alone did we understand the consequences it would have for our family.
From the start, our baby was never able to feed ‘normally.’ Gasping, coughing, choking. Weaning and bottle feeding was unbelievably stressful and our baby was always unwell.
It took us 780 gut-wrenching days, countless hospital admissions, and three hospitals to finally find out that our baby, Bodhi, now a handsome little boy, had severe pharyngeal dysphagia and poor respiratory health.
To date, no single test has uncovered the million-dollar question of “Why?”
On the outside, Bodhi looks like the perfect picture of health: growing, thriving and always smiling. But underneath, he is a boy that needs a lot of support with his feeding journey.
As we continue our search for a diagnosis for Bodhi, we would like to remind everyone that swallowing – something that seems so simple, so natural – is a gift, a pure joy not to be taken for granted.
Bodhi is just like any other 2 year old boy. He loves running and playing in the park, he dons his Wellies and jumps in the biggest puddle he can find. He is an animal lover and an even bigger digger and tractor fanatic!
When you see past the antibiotics, the physiotherapy, the nebulisers, the extensive workups, the hospital stays and the feeding tubes, you will see that he is simply a normal two-year boy with the extra special superpower of resilience.
Our journey is far from over. Today marks 933 days since the start of Bodhi’s dysphagia journey and he has now been recommended for a gastrostomy feeding tube. If this is what Bodhi needs, then we will be with him every step of the way.
Dysphagia pushes you to your absolute maximum. You will cry, you will laugh, you will cry some more. At some point you will likely break. But you will always get back up, and, oh boy, does dysphagia teach you a few life lessons.
We are strong because Bodhi is fierce, we are vulnerable because he feels pain, we are his greatest advocates because he has no voice and yet he is our rock because he smiles like he has no single trouble in the world. We long for a life when dysphagia is a distant memory, but until that date, we will keep rising to the challenge – for our son Bodhi, our superhero!