Q: Tell us about yourself and your family.
We are the Fonseca family - Dad is Joe, Mom is Christine, and our son is Ethan. We are high school teachers and Ethan is 12 years old, in grade 7. Our family used to include 3 beloved pets - 2 ragdoll cats, Emmy and Iris, and one big white dog - Thom, a Great Pyrenees. But all of our pets have passed on.
Q: Who do you care for?
Like all parents, we look after our son. However, Ethan is 100% dependent on others for everything, so in addition to being his Mom and Dad, we are also his main caregivers. Ethan's medical conditions include quadriplegic dystonic cerebral palsy, global developmental delay, breathing issues, and reflux disorder. He is g-tube fed and communicates via facial expressions as well as laughing, or crying.
Q: What do you love about caregiving?
We don't really think about this question. To us, it's just "uber-parenting" (parenting turned up a few notches). But we feel rewarded and honoured knowing that we are here to help him live his life in the best possible way.
Q: What do you find most difficult about caregiving?
It is never ending and there are no breaks. Even though we have help with nursing at school and at night (we've had the night nursing since Ethan was 9, which has been a Godsend), and other short term care workers , we are always "ON". Even when we are not with him, we are always in a hyper-vigilant mode.
Q: Do you have any life lessons or truths about family/community you would like to share?
We have proven that we can do this. Joe calls it "battle-tested parenting". However, we have had support from others, and we are very thankful for that. Many helpers (care workers, nurses) who have come to support Ethan began working with our family during Ethan's most difficult days. Many continue to support us. We felt and continue to feel very blessed.
Q: Tell us a story. What was a lovely and intimate moment that you shared with Ethan recently.
After planning a summer trip to Portugal for the 3 of us this past year, which included many things (such as arranging private duty nursing, a hospital bed, etc.), Ethan got double pneumonia. It was July, 2014. He was very ill and ended up being on oxygen at home for 9 days. We didn't think that we would be able to go on our trip, but on the we literally put Ethan on the plane - with oxygen. It was a horrible plane ride, but we got there, and he healed beautifully in the ocean air. The most amazing moment was when a local cafe in Torreira, Portugal (Cafe da Praia) let us try out their beach wheelchair! With the help of 2 lifeguards, Ethan was able to get down to the ocean's edge and put his feet in the water (something that he has not done since he was very small). That's when we all took a moment, and reflected on how awesome it was that we had made the trip. And we felt especially thankful for the help of strangers - the lifeguards - who didn't even know us. ,
Q: How do you think caregivers can be better supported by their communities and their governments?
As for communities; it's so great to see Inclusion becoming more common in society today. We feel very thankful that our son was born in this day and age, not in the mid 1900s!
Regarding governments; it took a long time for us to get the okay for overnight nursing, an essential service in our family. It was only after Ethan was found unconscious at 2 different times within 5 months when he was 9 years old, that we were finally granted night nursing. Although we are very glad for it, we just wish we had had it a lot sooner.
Q: Take this opportunity to share anything else you would like to say about your caregiving experience!
We are so thankful when, at the end of each day, all is " stable" with Ethan and with both of us.
My book, 'The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving' (House of Anansi Press) is available now in the US and Canada from all major booksellers.