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.
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.
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.
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.
Two lifetimes ago, I remember discussing my career trajectory and a five year plan with my boss. This conversation would replay in my head as I was administering Adelaide’s meds or chauffeuring her to the next appointment. That’s when I decided that five year plans are bs. But now, as this pandemic has taken me from treading water to treading tar, I wish making a plan was even feasible.
This is the face I used to make when someone would mention silver linings to me in regards to Adelaide’s life and death. Well, it was the face I was making on the inside anyway. Like so many parts of life, I’ve come to understand that with this pandemic we have to acknowledge the good with the bad, the storm with the rainbow and the pain with the silver linings. You can’t have one without the other and, oh my gosh, do we need the good right about now.
We’ve gotten to the part where the news reports are beginning to resemble a Michael Crichton book more than real life. Meanwhile, my brain is making sure to split its time equally between grief and anxiety - how considerate. How do we find control in the unprecedented and unpredictable? Thankfully, Adelaide gave me years to perfect these skills. Still, I’m finding myself a bit rusty.
The other night, I was laying in bed unable to sleep. My mind was racing in typical anxiety fashion until it found it’s way to the memory of a short essay that nearly every special needs parent receives upon finding out that their child will not be living the life that had been envisioned for them. It’s called “Welcome to Holland” by Emily Perl Kingsley. It dawned on me that the current corona-virus world is living a version of this essay: they went to bed in their own homes but woke up in Holland. The times may be unprecedented but major life upheaval is not.
Throughout my time writing this blog I have focused primarily on Adelaide. Yes, I’ve spoken about myself and how I’ve processed, coped, failed and persevered as her mother and caregiver. But aside from a few comical quips, I have steered clear of my own, sometimes debilitating, condition: anxiety. This week has been seriously rough in the anxiety department and I know I’m not alone. So, who’s up for some mental health intimacy while we’re social distancing?
