For the last couple years I’ve included my speech from this event as a blog post and even though more people were able to view it live this year than in the past, I believe there is still value in recording it here. Every word of this appeal is true and written from my heart. Thank you for reading and thank you for your support.
This is the face I made when someone would tell me that God only gives special children to special parents. Deep breaths cuz this tight rope is slick. I’m well aware that religion and faith are delicate topics but after years of receiving similarly distraught messages from hurt and confused caregivers I know that there are others out there that need to read this. Welcome to my intention convention.
“Maybe your next post should be about puppies.”
Look, I get it. The last couple blogs have come from a dark place, but here’s the thing, grief can be really f***ing dark. I could write about puppies or something else cute, fluffy and heart-warming, but that would be a false representation of where I am and unfair to all of those walking a similar grief journey. Grief is like playing pin the tail on the donkey but you’re spun around and blindfolded while underwater. You don’t know which way is up, let alone which direction the donkey’s ass is.
Ingredients
Grief resulting from a significant loss
Worldwide pandemic
2 days of basic socialization where grief and pandemic are discussed
At least an hours worth of tears
Pour ingredients into a container that is slightly too small to contain them all
Shake well
Let sit overnight in an overactive brain
Optional garnish: prior night’s used tissues
Best served with anti-depressants in bed
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.
