On Sunday I turn 39. My 38th turn around the sun was a year of grieving, healing snd shifting. The once frenetic pace with which I had lived my entire life - seriously, there was a time where if my calendar wasn’t filled from dawn to dusk I felt wasteful - crawled to a sluggish stop. At first I thought being forced to grieve during a pandemic was the next cruel phase of my trauma. But now I’m able to see it as some sort of bizarre white elephant gift that has proven surprisingly quite useful.
I came across Nikki McIntosh’s Instagram page and was immediately drawn to her story, compassion and advice. Her son, Miles, was diagnosed with SMA (spinal muscular atrophy) when he was 18-months-old. Since then she has made it her mission to share everything she has learned with those that are newly diagnosed, searching for a diagnosis, or perhaps are jaded by the entire medical system and could use a mindful reset. So much of what we learn while parenting a child with disabilities can be applied to typical life as well. Nikki’s practice of being “bold and benevolent” is the perfect example — but enough from me, how about I let Nikki explain it to you…
It’s Purple Day! You know the Cervantes family loves an excuse to spread some epilepsy awareness. I LOVE this community. I LOVE the people it has brought into my life, the lessons they have taught us and the empathy and understanding with which we support one another. But lately I’ve also had a sense of desperation as these awareness days come and go and our connection to them is no longer pictured with us.
Lately, I have felt very reactive, owning my inherent biases only once atrocities against a marginalized community are widely publicized. But I aiming to grow and be more proactive starting with a marginalized community that is incredibly close to me but that I cannot claim to be a part of: the disability community. As parents of children with disabilities we take up precious space: We are fierce advocates and our disabled children’s voice, but we are often not ourselves disabled. This means we do not get to drive this discussion. It is important for us to sit back and listen to the community and follow their lead - this doesn’t mean advocating less or even more quietly, it just means listening first because our advocacy isn’t about us.
Confession time: when Miguel booked Hamilton I was conflicted. Don’t get me wrong, I was unbelievably excited for him, for us! But it was complicated. We call people ambitious when they are dedicated to achieving their goals and most of the time this is a compliment. However, there is a tricky line we walk, especially as women, but also as caregivers regardless of gender identity, where ambition is often accompanied with conditions and guilt.
This photo was taken a year ago on March 3rd after Miguel’s return to Broadway in Hamilton. Eight days later our lives began to change forever. We are all grieving someone or something and the next few weeks could get a little sticky as we each face our own griefaversaries. We have also learned the very hard truth that our lives and world can change in the blink of an eye. So how do we persevere and ultimately survive? I’ve got one word for you: cockroaches.
This week I have spent a lot of time thinking about life after death, spirits and consciousness. You know, super light, meandering musings…(insert eyeroll). For those individuals that have a strong sense of their beliefs, I am frankly a little jealous. These are topics I’ve avoided because I find all options overwhelming and since no one knows for sure, I figured there was no point spending too much time thinking about it. That was before my child died.
I have a lit agent now! EEEEK! I am simultaneously excited and terrified because now that someone is investing in me I better live up to expectations - both theirs and my own. Cue me panicking and imposter syndrome setting in. Some people feel like they have an angel and a devil whispering moral sweet nothings in their ears. My moral compass is solidly built on a concrete foundation of guilt, so my angel and devil have resorted to building up and tearing down my confidence. They are non-discriminatory in source material and equally relentless in their individual messages.
This week I was faced with my first life altering decision in months. It’s not life or death, but has the possibility to shape the next few years of my life. While weighing the pros and cons, I felt so rusty and out of practice. I couldn’t help but think that Kelly of two years ago would have seen the answer much more clearly. My special needs mother superpowers are dulling.
I first connected with Cindy Angulo online a couple years ago when she was a new epilepsy mama. Since then I have enjoyed watching her beautiful, strong and resilient daughter, Vera, grow into a spunky little girl. I could not have been more thrilled for the Angulo’s when they announced Vera was going to be a big sister but knew that behind the joy lay an anxiety I could only imagine. So, naturally, I asked Cindy to discuss that anxiety now that baby #2 is only days away.
While we are surviving grief it can be easier to sit in some of our heavier memories: those filled with fear, regret and mourning more closely match the pain we are internalizing. So, this week, I tried to shift my mindset and spend time with the good memories, the ones that brought laughter to my lips, energy to my eyes and harmony to my heart. After all, isn’t that how we would like to be remembered?
In the last few years there have been few among us that haven’t shouldered grief we had previously thought unimaginable, unbearable. To heal from such pain feels insurmountable. To heal we must remember . While sitting with President Joe Biden’s words this week it dawned on me that I’m not actually sure what a healed version of myself looks like. But maybe I'm ready to find out.
