The next long journey
Thank you to everyone for the birthday wishes. It was a beautiful day spent with family, friends, and a Broadway show. What could be better?
While life has definitely slowed in the Cervantes household there is one member still keeping me rather busy: Anessa. I have hesitated to write much about her recently because she is too young to grant me permission to share about her life. However, I do feel compelled to write about my emotional response to recent news and you will have to forgive any vagueness or generalities.
Shortly after Anessa turned seven this year, she underwent a neuro-psych evaluation. This is a fairly common test administered by a psychologist that looks at how someone’s brain learns as well as possible behavioral diagnoses. Anyone at any age can undergo this type of test. Neuro-psych evaluations can determine specific learning disabilities like dyslexia or ADHD, among others.
To protect Anessa’s privacy, I will not be disclosing any diagnoses. Instead, I want to (need to?) work through my emotional response to the results. Monday afternoon Miguel and I sat in front of a screen and listened as the psychologist we hired delivered a broad overview of the results.
Sitting next to Miguel, my eyes glazed over as the psychologist screen shared numbers and graphs of where Anessa fell in certain areas compared to peers of her same age. I fidgeted, my brain wanted to shut down, I actively forced myself to listen and focus. A quick glance at Miguel told me he was equally uncomfortable. Although, to be fair, no one wants to listen – FOR AN HOUR – to all the ways their child is not typical or doesn’t match up with peers.
Nothing the psychologist said was shocking to either one of us. I could have anticipated just about everything that was reported – yet still I felt like a rug had been pulled out from beneath me. If I blinked I could have been sitting on our living room floor in Chicago with Adelaide in my lap listening to the early intervention specialist report back on all the milestones she was missing.
I quickly remind myself that Adelaide and Anessa are worlds apart (literally). Nothing about Anessa’s results are life threatening and she is going to lead a completely typical life: school dances, graduations, a career, and family of her own (if she chooses). I have perspective to know that everything reported to us is treatable and that I have the skill sets necessary to advocate for her.
Still the anxiety wouldn’t lift.
Then a friend validated what I was feeling: we are at the very beginning of a long and challenging journey. I can see the road laid out before us, the phone calls and appointments, the IEP meetings and follow-ups, the battles to get Anessa what she needs and the battles with Anessa herself. It is a lot and it’s only going to get harder before it gets easier.
Again, none of this is a surprise. For years I have known Anessa would need additional help in some capacity. But it was always something to address when she was a little older. Then, seemingly suddenly, she was older.
Earlier this year, when I finally determined the time was right, I began researching neuropsychologists. I spent hours researching, getting referrals, and speaking to psychologists on the phone. Only to put off making an official decision and appointment for weeks, because I knew it would start this very fall of dominoes.
I know we can help her. That she has every opportunity available to her. That she is not Adelaide.
But this week I am allowing myself to sit in the overwhelmingness (is that word? It is now!) of it all. To let it feel heavy. Then, next week, I’ll dust off those advocacy skills and make the appointments and do the things necessary to give Anessa the best chance at an education suited to her learning style and abilities.
She is going to be ok and so am I. One domino, one phone call, one inchstone at a time we will make progress. But today? Good lord are there a lot of inchstones between here and there. Miles of them.
Updates and events:
I will be moderating a virtual panel as part of Undiagnosed Day hosted by the UDNF on April 29. Learn more and register here.
CURE Epilepsy Takes Manhattan: Get your tickets or sponsorship opportunities today to see Miguel and his friends from Broadway’s American Idiot reunite to perform punk/pop showtunes to benefit CURE Epilepsy on May 4th in Manhattan! Be sure to use my discount code to get some 30% off your tickets: KELLY26
ID: Anessa is wearing purple pajamas while sitting on Miguel’s lap. Miguel is wearing a white t-shirt and grey gym shorts and looking at his phone. They are sitting on a chair on a balcony overlooking grass and trees with a blue sky filled with white puffy clouds. The photo is taken in profile and slightly behind them.
