By Catherine Villasenor, Home Suite Hope Director of Operations
I’d officially like to introduce my son, Caidan Jeremiah Villasenor.
My husband, Danier, and I welcomed Caidan into the world in July 2022. He is a perfect addition to our little family. Along with his sweet smile, chubby cheeks, silly faces, and cuddly personality, Caidan has something a little extra to love – an extra chromosome to be exact. Caidan was born with Trisomy 21, commonly known as Down Syndrome.
The discovery came shortly after I underwent emergency surgery for an ovarian torsion – when an ovary twists around the ligaments that hold it in place, cutting off blood flow to the ovary. This happens to 1 in 20,000 pregnancies. To be truthful and transparent, receiving the diagnosis at 23 weeks pregnant was difficult and scary. In Canada, one in 781 babies are diagnosed with Down Syndrome. As a first-time parent, you already don’t know what to expect and the diagnosis adds on a new set of uncertainties where a lot of learning must take place. My husband and I took it day by day, being gracious with ourselves as information poured in.
The Down Syndrome diagnosis also came with other medical complexities for Caidan. In utero, Caidan was diagnosed with fetal pleural effusion – an accumulation of fluid in the chest cavity of a developing fetus that can compress and interfere with the developing lungs and/or leak into other organs. This happens to 1 in 15,000 pregnancies. Caidan was also born with a congenital heart defect called Atrioventricular Septal Defect (AVSD). In simple terms, there are holes in between the chambers of his heart. This heart condition is common amongst individuals with Down Syndrome.
The complexities of all of it feel overwhelming at times, however, with the right resources and supports in place, Caidan has the potential to have a life where he can shoot for the stars and live out his dreams. The stigma around Down Syndrome has led us to believe that individuals with Down Syndrome are unable to live independent lives and contribute to society, but it’s the complete opposite!
This past World Down Syndrome Day (3/21), I came across the webpage “Facts, Myths & Truths about Down Syndrome” from the National Down Syndrome Association. One of the facts that listed said:
“Quality education programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down Syndrome to lead fulfilling and productive lives” (https://ndss.org/myths-truths)
I loved this, not only because of the hope it gives me as a mother for Caidan’s future, but because it included “the community” when it listed where supports need to come from.
There’s a common saying, “It takes a village to raise a child.” Somewhere over time, the understanding of a person’s village morphed into the idea that it only consisted of people within your immediate circle, such as a friends and family. But a village is actually much larger than that, and should also include your neighbourhood, health care, family supports, childcare, education, financial supports, etc.
I could not raise my son without my village. My village starts with my family, friends, church, and work. But it extends to the cardiologist team, the maternal fetal medicine clinic, social workers, the genetics medical team, NICU nurses, our developmental consultant, occupational therapist, pediatrician, the Sick Kids Hospital Down Syndrome Clinic, Halton Down Syndrome Association… and more will continue to be added as we meet new families, reach new life milestones, and adjust not only to Caidan’s needs, but our needs as an entire family.
I can recall all the times we called our friends in tears trying to make sense of all the information being shared with us, asking medical staff what felt like “silly” questions and for guidance as we made big decisions, receiving calls or text messages filled with words of encouragement to get us through day to day life, having meals dropped off to save us the hassle of figuring out food, being offered flexibility to attend the weekly appointments to ensure the health of not just Caidan, but myself, patience from the doctors who sat down and explained everything in depth to calm our nerves, and meetings with a lead worker to guide us through accessing complex processes to access resources. I could not raise my son without my village.
From day one, the community has wrapped around my family and I, supporting us through the Down Syndrome diagnosis and other needs. This was never the journey I thought we would ever be chosen to undertake, but it is one I feel confident pursuing because we have the adequate supports to ensure that we can help Caidan thrive.
Every step of the way, there was one thought that lingered in my mind, “I am so glad that Home Suite Hope offers this exact type of support to single parent families experiencing homelessness in Halton Region.” An individualized, wraparound model is an incredibly effective approach to address the needs of vulnerable individuals. Home Suite Hope’s programming offers single parents with a housing rental subsidy, case management support, referrals to community programs such as food banks, kids programs, parental supports, etc., life skills programming, a scholarship program to pursue post-secondary education and a marketable career, access to child care subsidies, and so much more.
While working at Home Suite Hope, I have had the privilege of being a member of a village for amazing participants that worked hard every day to achieve self-sufficiency. Home Suite Hope programs work to connect single parents with adequate supports to ensure that they can thrive, so their children can thrive without the barriers of poverty.
If you asked me a year ago how I imagined myself being a mom, I would have never thought I would say – “I am a mom of a child with a disability.” I am thankful that the community invested and funded programs that support vulnerable families, even before I knew I needed it.
You never really think it will happen to you until it does. As a community, I encourage you continue to invest your time, money, and efforts towards programs working to support the vulnerable populations. We, as Halton Region, are a village. Let’s continue to support one another.