This is a story of a couple and their six kids who overcame many odds to fulfill their dream: circumnavigating the world by boat. They had to adjust, adapt and accept deep vein thrombosis (DVT) and severe brain palsy, amongst many other obstacles. They are already halfway through and still going west, one mile at a time.
Receiving the news
Most of us can relate to the shocking moment when we receive ¨the news¨and realize that life will not continue as planned. This happened three times to us. First, when we were young and newly married, Roby was diagnosed with acute DVT which made us change our sailing-around-the-world plans and adjust to our new reality. Years passed and we learned to accept and adapt. The second time was back in 2013 when our fifth baby died unexpectedly 2 weeks before birth. Our biggest challenge was yet to come in January 2017, when our sixth baby, Candelaria, was born with severe brain palsy due to a rare hereditary disease. She went with a suitcase full of unexpected and ¨undesired¨ things as well as a basket full of ¨angels¨ dressed up as doctors, nurses, therapists, friends, and family members who helped us live with and live through the most difficult parts of having a child with severe disabilities. These events started molding our characters and beliefs, giving us a great sense of awareness of our great vulnerability, life´s unexpected way of unfolding, and a deep desire to cherish every moment.
The moment came
Years passed and Candelaria, now almost 5, made her room in this family of 8 showing all of us that, despite the doctor's prognosis, she wanted to share her life with us in her own ways. She cannot see or talk, and she can hardly move. She can listen, feel and smile. The first three years of her life weren’t easy until seizure medications and a gastrostomy stabilized her health. This made us reconsider a once unthinkable dream: sailing around the world as a family. Some months later, ¨Why not? ¨ was one of the names we wanted to put on our new boat, which ended up being called OHANA, which means “close family and friends” in Hawaiian.
Adjusting to special needs
This time, circumnavigating would require some adaptations. Months of stocking up on medical supplies; a postural wheelchair in the middle of our cockpit; most of our storage space (i.e. bilges, for yachties) stocked up with sterile supplies to inject life-saving medication daily through Candelaria´s port-a-Cath; and two caregivers (Ruth and Amalia) to help us with her 24-hour care needs, were some of the ways in which we adjusted this adventure to our possibilities.
Life aboard is, in some sense, similar to our quarantine experience: lots of family time, each one does his or her duties and we all enjoy life together with our own uniqueness. Sailing is us enjoyable, challenging, and unique part of this year's experience. Sunsets and sunrises, lovely ocean views, warm weather, knowing new places and meeting new people, admiring nature under and over the water, taking responsibility with night watches at sea, and caring for Candelaria, are all part of this year's experiences as a family.
Will we be able to complete the whole trip? We still don´t know and we are still taking it one day and one mile at a time. We left Ft. Lauderdale in January 2021, sailed through the Bahamas, and the Panama Canal, enjoyed nature in the Galapagos, crossed the Pacific Ocean for 19 days to French Polynesia, continued to Fiji, Indonesia, sailed 24 days non-stop to Reunion Island, and have almost finished crossing the Indian Ocean reaching South Africa. Our aim is to finish our circumnavigation where we started in March 2022.
This is how, slowly but gradually, one mile at a time, this little girl and her family are fulfilling one of their dearest dreams (in spite of all the odds) and enjoying a once-in-a-lifetime experience that will surely stay in their hearts forever.
If you'd like to follow us or know more about us, you can do it at our website www.ohanawaves.com or on Instagram @ohana__waves. Don´t hesitate to reach out to us. We would love to hear from you! Corina van Waveren Souviron