I think most of us have some ideas of what parenthood will be like when we first embark on our journey of starting a family. We imagine milestones, sibling relationships, and school events from the first day of kindergarten to graduation.
What we don’t really imagine is, well, the unimaginable. We don’t imagine seizures instead of newborn bliss, or hospitalizations in place of that special first-birthday party we planned to a tee. We don’t imagine first ambulance rides before first steps or a diagnosis that changes everything we did imagine.
When my son, Matias, was diagnosed with a rare chromosomal disorder called Ring14 (Ring Chromosome 14 Syndrome) not long before his first birthday and after months of relentless seizures, I quickly realized that I would need to stop imagining and start learning. Naturally, I grieved (and sometimes still do) the life I thought we might have. Then, I slowly started learning to navigate the life we do have.
What I never expected when we first received that Ring14 diagnosis was that we would find enough joy along our journey to balance the challenges and heartache we would experience.
And those challenges seem endless some days. We often find ourselves submerged in appointments, meetings, therapies, phone calls, and sleep deprivation along with the nearly constant health and behavioral challenges.
As parents, we are also caregivers. As siblings, our other children often sacrifice time and attention for their brother’s well being. And as the one with Ring14, Matias struggles in many ways daily – seizures that overtake his body, legs that don’t carry his weight well, the frustration of being non-verbal, and so much more.
But in the midst of those challenges, Matias has taught us the true meaning of joy and appreciation for life. I often wonder how the same boy who faces these immense struggles is also the happiest person I’ve ever known.
Instead of watching Matias teach his younger siblings how to ride a bike or build with blocks, I watched him teach them compassion and empathy.
While knee deep in seizures, medications, and hospitalizations, we found a Ring14 support group who’s members would become family.
In some of our darkest hours, we learned that light comes from the most unexpected places – a card from a friend, a word from a stranger, the strength of a child.
With Ring14 has come many lessons in perseverance, acceptance, and finding joy where it seems least likely to exist. It has taught us that life is not made of ideas, but experiences. So, although this is not the life we once imagined, it is a life more extraordinary than we could have ever imagined.
By Heather McCain
You can read more blogs by Heather at her website: https://www.mombieneedscoffee.com/