Out of focus

Out of focus

Kelly Cervantes

An early lesson Adelaide taught me was to let go of what you can’t control and focus on what you can. We couldn’t control her seizures but we could make sure she was seen by the best doctors. I couldn’t always take her pain away but I could love and snuggle her so she knew she was never alone. I couldn’t control her multiple rare diseases but you better believe I had complete control of her resulting schedule, diet and medications. But what do you do when everything seems out of your control? Like, everything.

Dear Chicago,

Dear Chicago,

Kelly Cervantes

Dear Chicago,

Miguel and I stood in a bar in the city where we had met and grown our family, surrounded by some of our dearest friends. It was our going away party in New York City and the night was coming to a close. We thanked everyone for coming out, for years of friendship and reminded them we would only be gone for one year - that was four years ago. How could we have known how this city would steal our hearts? How we would find a home here in all the ways that matter? I truly don’t think there was a more-livable or better-suited city for our family, during this time in our lives, than Chicago.

The big MD

The big MD

Kelly Cervantes

No, I’m not talking about a medical degree. Monday, July 6th, the truck will roll in, load up and move out. Our family will follow suit the following morning. Up until this point its felt far enough away that it didn’t seem like it was really going to happen. But now with the boxes piling up, reality is setting in.

Father's Day

Father's Day

Kelly Cervantes

As Father’s Day approaches I asked Miguel to share his experience grieving Adelaide because other men need to know they are not alone in their grief journey. Just as Mother’s Day can be a minefield for some, Father’s Day poses its own challenges for others. Or, maybe, there is peace.

Mama!

Mama!

Kelly Cervantes

I chose this picture because, unfortunately, I know that folks are more likely read the caption when it is below the picture of my cute *white* baby. In a prime example of backwards/privileged logic, I've had to acknowledge that my voice may reach farther, even on a topic with which I have no first hand experience. To be clear, this is NOT ok, but I will accept this responsibility and use my voice to support our black friends and community members. I am pleading with the white special needs community, in particular, because we acutely understand the desperation of fighting for our child’s life.

Inclusive as a mother

Inclusive as a mother

Kelly Cervantes

I had the honor of meeting Sherri Brady and her beautiful daughter, Lauren, who has Rett Syndrome at Epilepsy Awareness Day at Disneyland in 2018. When I say that these two women lit up the room - I mean it. Their energy is infectious and their love contagious. I encourage you to read her account as a black special needs mother and share it. When we, as a special needs community, tout inclusivity let’s make sure that includes black families as well.

Four years later

Four years later

Kelly Cervantes

It was just one week. One regular looking week on the calendar - but it was anything but. Four years ago this week, the trajectory of my life, which I had been meticulously planning and mapping, was blown off course. It wasn’t just a small nudge but three hurricane force blasts. At the time I could feel their sudden impact but there is no way I could have grasped the ripple effects they would have on the rest of my and my family’s life.

You're not that special

You're not that special

Kelly Cervantes

Since I began publicly sharing my family’s journey, there have only been a handful of moments where I’ve questioned if I should really be as open as I am. In the end, I’ve always chosen to lay it all out there and I am so glad that I have. Last week’s post about Mother’s Day was no exception. Your responses and affirmations were the rope ladder I needed to pull myself up out of my rabbit hole. They also reminded me of one of my guiding truths: I am just not that special.

Tripping

Tripping

Kelly Cervantes

Well, I survived Mother’s Day. My boys were amazing and I actually enjoyed myself. Fair warning, this is where the warm fuzzy’s end. The very next day, I didn’t waste any time spiraling into anxiety oblivion. I found myself at the bottom of a familiar rabbit hole asking the same basic question: how do I move forward with my life, allowing myself to heal so that I can lessen the pain, but also never forgetting anything about my Adelaide.

Mother's Day Minefield

Mother's Day Minefield

Kelly Cervantes

During a call with my psychiatrist, she asked how I was feeling about Mother’s Day. I told her I had hoped to just skip Mother’s Day this year. As an alternative, she suggested that I come up with a plan for how to approach the day. This seems more logical of course, but all I have been able to see is yet another emotional landmine on a pock-filled calendar… and so far, my track record at avoiding them has been poor.

More than words

More than words

Kelly Cervantes

We have listened to their first hand accounts and thanked our medical professionals profusely. We have rightly called them heroes and compared them to soldiers defending our country from this evil viral invader. But if we are going to make these comparisons then it is time that we treat these professionals like the soldiers they are. Post traumatic stress disorder is already rearing its ugly face in our hospitals and we should be getting in front of it.

Feed your purpose

Feed your purpose

Kelly Cervantes

Hey! Guess what?! This week was actually better than last! Maybe I’m finally flattening my own emotional curve, though, I think we probably need a few more weeks of data to be certain. Oh, I was definitely still heavily dependent on my meds, there were tears, and more than a couple anxiety induced emotional-reset naps… but there were also more frequent good moments and I’m going to hold on to that. What spurred this shift, you ask? It was pretty basic, actually: I felt needed and useful. I fed my purpose.

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