At some point during puberty most of us develop a little voice in the back of our heads whispering salty negative nothings. Ideally, as we get older we learn to ignore that voice, or at least turn down the volume a bit. Then you hold your child for the first time and it all goes to hell. I’m a fairly confident person and was able to tone out my inner negative voice not long after Jackson was born, but with Adelaide, with a special needs child, I’m not certain the second guessing ever goes away.
A rare diagnosis likely doesn’t come with a cure, and often not even a treatment, but it offers a navigational chart of what a future could look like. It comes with warning signs so you can line up the specialists in advance and a community of families battling the same rough waters. So, when you don’t have a diagnosis, sentences like, “I’m sorry mama, it’s NOT cerebral palsy” can be absolutely and bizarrely heartbreaking. Please welcome fellow warrior mama, Colleen Jendreas @keep_going_owen, to the blog…
This week, for the first time in nearly a year, Miguel and I stepped foot inside a hospital. A quick visit to Chicago before our annual family vacation to Lake Michigan provided us an opportunity to visit Rush University Medical Center where Adelaide had received care. During her life, the hospital became a home away from home. So, perhaps, it was no surprise that I felt closer to her within those walls than I had in months.
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.
