Inchstones

3/16/19 Family visit to see Daddy at the CIBC Theater

3/16/19 Family visit to see Daddy at the CIBC Theater

Last weekend we got to do something that used to be very normal for us: we visited Miguel/Daddy at work. When Jackson was an infant he would hang out with the hair department during “Giant" at the Public Theater, and as a toddler, we would chase him up and down the aisle’s at the Richard Rodgers theater during “If/Then”. By the time Hamilton rolled around, Adelaide got to join on these excursions, strolling down 46th street again to the Richard Rodgers. I’ll never forget visiting in-between performances at Hamilton and Lin-Manual Miranda walked up to Miss A and started singing “Adelaide” from Guys & Dolls. Daddy’s work was a magical place from the people you met to the aisle’s of seats that could double as a playground. Throughout those early days we remained optimistic, that even though Adelaide wasn’t progressing like her brother did, she would still one day join him in this theatrical jungle-gym. While scouring a facebook page for parents of children with hypotonia I came across the concept of ‘inchstones not milestones’ and it was EVERYTHING I needed at that time and more.

Because of Adelaide’s hypotonia (low muscle tone), she wasn’t hitting milestones and I was understandably concerned. All I could focus on was how she wasn’t rolling over or holding her head securely or sitting unassisted. Inchstones not milestones taught me that just because it may take Miss A longer to hit the traditional milestones we could still enjoy and celebrate every single inchstone she made to get there. For the first two years of Adelaide’s life, we lived inchstone to inchstone, noting each time she sat unassisted just a few seconds longer than she had the week before or vocalized a new sound or reached more consistently for an object. My concern was certainly still there but as long as we were making progress, albeit mind-numbingly slow for this one-time New Yorker, I stayed hopeful. Then just before her 2nd birthday, after our longest stretch of seizure freedom (3 months), and after kicking some infantile spasms ass for a second time, the rug was pulled out from underneath us. Adelaide’s smile faded and the seizures returned along with a developmental regression that she has yet to come back from to this day. Since September of 2017, her progress has been halted at best, she’s regressed at worst. At some point the concept of inchstones became cold comfort as her developmental progress spun further out of our control.

3/7/2015 Pizza dinner with Daddy at the Richard Rogers Theater in NYC

3/7/2015 Pizza dinner with Daddy at the Richard Rogers Theater in NYC

Several months, and a LOT of soul searching later, inchstones started to take on a new meaning for me. Just because I could no longer see even a half-inchstone’s worth of progress in Adelaide’s development didn’t mean that I couldn’t personally live inchstone to inchstone. For me, this motto became a mental state, a way of life, to which I continue to aspire. Ok, but what does it mean? It means that I let go of, (or desperately try to), everything that I can’t control - like Adelaide’s development - and enjoy her in the moment. Now, this does not mean giving up. Miss A still receives vision therapy, OT, PT and music therapy weekly but these sessions have become more about keeping her attention, keeping her awake and keeping her moving and less about the goal of the next inchstone. When I’m not obsessed with even the smallest sign of progress I can enjoy what she is able to do in this moment, right now.

Taking life one inchstone at a time also means not biting off more than I can chew. I’ve spoken at length about how overwhelming and tiring being a caregiver can be. In other words, my threshold for future plans, capacity for projects and emotional bandwidth is severely compromised. That’s my truth and, instead of fighting against it, life became much easier when I acknowledged my new limitations. No, I do not know our family’s plans for next week. I can tell you what we are doing this afternoon and maybe tomorrow morning. No, I cannot volunteer to help with the school parent committee, aside from being completely unreliable due to Adelaide’s frequent flyer status at the hospital, my plate is full. And no, I don’t feel like being social this evening, even if I could find a nurse/sitter, because I’m exhausted from life (but please don’t stop inviting me!). Basically what I’m saying is taking life one inchstone at a time gave me permission to say ‘no’. And what a liberating feeling those two little letters create.

3/10/2018 Big girl at the CIBC Theater in Chicago

3/10/2018 Big girl at the CIBC Theater in Chicago

Wrapped up in my interpretation of inchstones is also forgiveness… for myself. Did I forget to have Jackson bring in a collection of items to class last week as his teacher had requested? Sure did. Am I going to beat myself up over it? No, I am not. I will acknowledge the mistake, realize that it is not detrimental to anyone’s well being and try harder next time. As Elsa would say, “let it go, let it gooooooo!” Carrying the extra burden of guilt is not going to help anyone, especially my previously noted compromised emotional bandwidth.

Adelaide is amazing and she is surviving and that wouldn’t be happening without me. So, as I used to celebrate Adelaide’s inchstones, then gosh darn it I should get to celebrate my own too! Maybe this is why I sneak wine into the hospital, or always have dark chocolate stashed in the house: making it through the day deserves a moment of recognition. This caregiver life is tough but we’re doing it. We may stumble and fall but we always get back up and that deserves the occasional margarita, or nap, or whatever floats your boat. So, when someone reminds me that it’s ok to take life a day a time and that still seems a little too overwhelming, I remind myself that an inchstone at a time will do instead. Adelaide will likely never run across the stage with her brother but returning to Daddy’s work, a previously regular Saturday afternoon, is an inchstone worth celebrating… and don’t you worry, I did :)

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