Meet the Ortiz Family. A family of 5 representing their perspective on living with Down Syndrome as our Disability Awareness Month Ambassadors.
June 24, 1979. After 9 months of having a seemingly 'normal' pregnancy, Tony and Daisy were excited to welcome their first-born, Michael John, into the world. Newlyweds in a new country, they had just immigrated from the Philippines to Kingston, a small town in Ontario, Canada. Both were ready to start a new chapter together. After taking Mike home, they noticed he had very distinct features and was having a hard time breastfeeding. Two weeks later, it was confirmed that Mike had Down Syndrome, Hirschsprung disease, hearing loss, and impaired vision, and he would likely encounter more complications down the road. At the time, Tony was working at the local psychiatric hospital as a Residential Counselor, where he had many patients that were children with Down Syndrome, so he knew very well what kind of challenges would lay ahead. It was a complete shock, and they went through denial and frustration. Though support from the government, hospital, and local community organizations was offered, even accepting the help felt difficult. In these tough times, Tony and Daisy turned to their faith and prayed. During a routine visit, a public health nurse posed a question that helped them shift their perspective: 'How long can you deny your son is mentally challenged?' They began attending group counseling sessions for families, welcoming the support from health professionals on how to take care of a special needs child. They brought Mike out to various organized community events and had him join several community groups, enabling him to be as independent as possible. They helped him set up his day, prepare meals, and taught him to clean up after himself. They also coordinated outings with other special needs kids, going on fun trips like bowling, movies, and parks.
The journey was not easy as Mike continued to develop health complications. At the age of one, they recall almost losing Mike after he developed chronic stomach distension and infections from abnormal cell development. At one year old, Mike had to get a colonoscopy and spent six months in intensive care. The warrior fought through and survived. As a young adult, more challenges arose. After high school, they noticed Mike starting to have frequent tantrums that were getting progressively physical. It was hard not only because the tantrums themselves were a safety concern for Mike and everyone else, but also because it was difficult to watch someone they loved go through something so hard and feel helpless. They knew Mike was not being himself, but without him being able to express himself clearly, it was hard to detect the problem. After several months, the doctors discovered that Mike had developed thyroid problems and were eventually able to prescribe drugs to manage the situation. Through it all, both Tony and Daisy remained pillars for the family.
Tony and Daisy had two more children after Mike: Richard and Charmaine. Both children developed a very close and unique relationship with their older brother, Mike. Richard, only two years younger than Mike, attended the same school and naturally took on the protector and fun brother role. He always stuck up for Mike, protected him, intuitively checked in on him, and made him laugh. Richard shared, "It was tough. I was young, selfish, and all I wanted to do was go out with friends. My parents were at the peak of their careers trying to make as much money to support us, so they had to rely on Charms and me to take care of Mike a lot. At that time, I didn't understand. I felt like my teenage years were robbed, but I had no choice; my parents were working and also needed time for themselves. So I felt angry at them and just the situation. I would fight with my parents because I wanted to go out and have fun." It's interesting how time, space, and experience can take a memory and make it feel completely different at a new age. Richard, who now has two sons of his own, shares, "Having an individual like Mike in our lives is very challenging but a blessing. He keeps the family close. We learned to love, support, help each other, and accept people for what they have and what they live with, with no judgment. Also, we learned to be grateful for what we have as a family and our health." Charmaine, being the youngest, stepped into a family where routines were already established. She grew up seeing how everyone in their extended family (aunts, uncles, and cousins), especially her parents and Richard, took care of and embraced Mike. So when it was her turn, she was willing and ready. "As a young child, I remember noticing that his eyes and head were a bit different from ours, but that was it. We all played with Mike the same. My middle brother Richard took care of us. I'm not gonna lie; sometimes it was tough. But I don't see it as a sacrifice or burden. If anything, it made us stronger as individuals and as a family." Charmaine has a very interesting perspective as the youngest and a natural empath, nurturer, and observer. She shares fond memories of Mike being obsessed with the Simpsons, playing cards, making a huge mess in the house with Mike when they'd throw powder at each other, and watching him become the most amazing uncle to her son and both of Richard's kids.
Yes, there are many things Mike won't get to do in his life, and the limitations can seem staggering, especially in a culture where we focus so much on striving. One of the most powerful insights Charmaine shared was that, in her eyes, Mike is the most virtuous man she knows. He never asks for much, and whenever Charmaine was going through something, Mike always sensed it and would be the first one to come to her room and give her a tissue when she was crying. He truly embodies how to love unconditionally. Mike is so present and sincerely loves where he is and who he is around - his family.
It takes a village to raise a child. In this story, everyone, from the community support workers to the extended family, helped strengthen the bond of this powerful family unit. For inquiries on government support programs for people with Down Syndrome, go to https://cdss.ca/resources/disability-supports/. In honor of celebrating this family, we are offering everyone 20% off our entire website until Aug 1 using code Charms88.