Parent of a child with disabilities

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.

Ambition conditions

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.

Be the cockroach

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.

Who you gonna call?

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.

WANTED: Mute button

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.

Decisions decisions

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.

So, how about that sibling?

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.

Remembering

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?

"To heal we must remember"

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.

Super funk

Raise your hand if you’re hurting! Yeah, I’m feeling it too. This week hit hard and has left our house in a super funk. Miguel is questioning what we’re doing with our lives, Jackson misses his friends and I took not one but two naps on Wednesday. Seriously. So, when does it get better exactly?

What would special needs parents do?

We are a nation divided by many forms of inequality. These problems feel large and oppressive, difficult to define and impossible to fix. You know what else feels that way? Having a child with an incurable condition, yet these parents and caregivers never give up and neither can we. Maybe it’s time we start asking ourselves in moments of crisis: what would a special needs parent do?

63,000 words

Well, friends, I finished the first draft of my book last week: 63,000 words that ensure Adelaide will live forever. At first I thought the book was going to be about Adelaide: her life, loss and lessons. But what ended up coming out was my own journey and how her lessons and her losses forever changed the course of my life. Now, I just need to find someone willing to take a chance on me and my inchstones.