“Did you fast before coming in today?” The phlebotomist asked.
“No, but I’m not getting a CMP so it should be fine.”
I felt a small rush as words came out of my mouth that I hadn’t uttered in over a year.
Learning this language and using it to care for and advocate for Adelaide, was one of my favorite parts of my job - and then I was forced into retirement.
“Do you have a disability placard for your car yet?” Adelaide’s neuro-muscular specialist asked.
My breath caught in my throat. I looked away.
“No, but…” I trailed off as I realized she hadn’t asked me if we needed it or if we qualified for one.
Recent efforts to normalize mental health and depression created the now popular phrase ‘its ok to not be ok’. This is a completely valid and important sentiment and one I’ve clung to as I’ve navigated life in recent years - especially during Adelaide’s life. Then, last week, I came across an Instagram post by psychotherapist, Seerut K. Chawla, in which she said, “it’s ok to be ok.” These five small words, eleven letters, hit me with the force of a wild pitch.
“Our new neighbors are moving in today.” Miguel announced.
“Do they have any kids?” Jackson asked.
“An 8-month-old and a two-year-old.”
“I love babies!”
Jackson has made no secret of his desire to add to our family and it is devastating as his mother, as the child-bearing family member, that I cannot in any simple way give him the one thing he wants more than anything in the world: a sibling.
This community is brave and strong, resilient and supportive. But the truths we face, the very ones that bind us together, can also be the ones that shatter us over and over again.
I’m at a loss. What in the world is there to say when we are being berated with incessant mass shootings, persistent murders of innocent black people, and disquieting displays of Asian hate - all amidst a pandemic that has taken more than half a million lives and counting. If we want to see lasting change we must continue to take uncomfortable steps outside of our regular life all while abandoning our tolerance.
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.
