One step forward, two steps back. Two steps forward, one step back. It’s the medically complex/rare disease dance. Adelaide and I knew it so well we could even anticipate some of the choreography. She was an incredible dance partner even if it wasn’t a dance I would have ever chosen. As the dumpster fire that is 2020 barrels on I find myself doing my own solo routine, which I’ve aptly named: my chicken dance
I spy with my little eye: a humidifier, a pulse ox, an IV pole with feeding pump, a medical chair and a dog sitting on a child. The house is coming together, only a few scattered boxes are waiting to be unpacked. There are traces of Adelaide everywhere in the house: a photo here, a ladybug there. But, in addition to her physical being, there are a few other Adelaide trademarks noticeably missing.
This is the face of someone who has just seen that their moving truck has FINALLY arrived. On Tuesday, two weeks after we arrived in New Jersey, our stuff did too. Our people and their things have been reunited, the movers have left and the great unpacking has begun. Yet, I still find myself asking a familiar question, “are we there yet?”
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,
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.
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.
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.
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.
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.
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.
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.
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.
