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The Bunker

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From Kate:

Getty has been diagnosed with SMA for the past eight years of her life. At the age of four months, her pediatrician noticed that she wasn’t bearing weight on her legs and we were sent to a neurologist that very same day. Within a few minutes of being in the appointment we were told that Getty had an incurable, degenerative, and complicated disease called Spinal Muscular Atrophy. We were instructed to just “Take her home and love her.”

After that point the game of life changed. It changed in ways I couldn’t see coming: the addition of devices, supplies, medical professionals, etc.

I didn’t know exactly who how to care for Getty, so the steep learning curve was intense and very consuming. I remember often just not eating or sleeping for many nights very early on, worried that if I left her side something dire would happen. After a while, I realized that someone needed to stuff food into my mouth, literally, so I would have some kind of substance while cramming for this incredible test of strength and courage.

Caring for Getty has been a roller coaster in all kinds of ways: setbacks, celebrations, triumphs, euphoric, confusion, anger, grace, and incredible amounts of unconditional love and support.

I can’t speak for all SMA families, but something interesting happens after some time. You lose track of time, you lose track of awareness, you lose track of friends, you lose track of you life before SMA, you lose track of self, and you lose track of the world. For me, all of this loss kind of ran together.

The intensity of caring can create a sense of isolationism. At some point your vocabulary and identity centers around your child.

An SMA mom explained it like this one day, about four years ago. “It’s like being in a bunker for years. You have the necessities to live and care for your child, but the rest of the world keeps moving. Every once in a while you are able to leave the bunker and life as you knew it, changed. You forget how to socialize.

For example, you get to a grocery store and forget everything you were supposed to buy because your body, brain, etc. is still trying to figure out how on earth you got to the store in the first place. Why is it so loud in here, and why is everyone in such a rush? Why are parents being unkind to their children? Wow, that kid just put a whole banana in his mouth, I should just wait here and make sure he doesn’t choke, because I am actually a trained professional now. 🙂 ”

I remember the moment she was finished with her story. I was laughing so hard, tears were running down face. If you read with a certain perspective, maybe the summary would be, you left home to go to the store and you felt a little out of place. But I would argue there is so much more to the story that most people might not understand.

The truth is in the details. It’s the blanket of fog that envelopes you as you leave your child and go out into the real world. It’s the panic that you endure the second you leave your child’s side. There is a blankness that happens in your brain when you are asked to remember something other than the needs of your child. It’s almost like there is absolutely no space in your brain for grocery lists, basic errand needs, directions, and conversation. I call it the “brain dump.” Anything other than aspects of Getty and Getty’s care immediately dump out of my head.

In many ways I took solace in her story. I could relate instantly and it offered me a comfort in knowing that I was clearly not the only SMA mom feeling this really weird sense of isolation. I remember fondly being in social situations and not understanding how to carry a simple conversation. I just wanted to get to the heart of what we were talking about and move on. 🙂 I wasn’t patient, because my rationale was basically, “I don’t have time to do small talk. How do people even have time in the day to do this? Just get to the point and let’s move on.” A bit awkward. 🙂

Something else kind of happens that I didn’t foresee either, and that is relating to others. It is very hard to relate to non-SMA moms. There is no judgement involved, it’s just so different.

The level of their child’s independence, experiences, aspirations, parent aspirations, extra ciricular activities, relationships, etc. It literally is all different.

If I responded with the same topics I would say that Getty has little to no independence. She relies almost completely on every aspect of care. Her experiences are often surrounded by medical professionals and tests.

I don’t truly know what her aspirations are, but hopefully with more time, using her eye gaze device, we might be able to have a conversation about that topic. I don’t have parental aspirations (insert opinion), because I don’t think it is our responsibility to create, coerce, and/or support our dreams for our kids. Extra curricular actives are almost impossible. Most, if not all are not accessible.

We also have to be super careful about germs and exposure. We remain isolated for a good part of the fall and winter months.

Relationships are also difficult. Not in the way one might think. Getty has always been welcome in any social setting, however sometimes having strong relationships can be tricky because she is unable commit to a consistent routine with kids her own age. The VGo she uses for school is an awesome way to bridge the social and educational gap, but kids like routine and consistency and sometimes the screen of a robot can have its challenges to make friends and keep friends.

Pretty different.

And if you are reading this with sadness or indifference, please don’t. While many of these examples could leave a reader feeling like our lives might not be as fulfilled, I want to reroute your thinking now.

The happiness of our kids are the priority and with this, a sense of fortitude. We figure things out and make it happen.

I am always inspired by other SMA families that take a situation and rethink the possibilities. They start their own Girls Scout troop. They find amazing ways to solidify independence for their kids. They create gadgets, develop software, they build physical therapy frames to make sure their kid’s are engaged and independent. They advocate for their child in IEP’s. They fight for extended PT and OT time. They figure out the complicated map of social services that give their kid’s more options in care and activities. They take a simple toy and adapt it for their child’s needs. And here is the best part, they share it with all of us.

This community is determined to give their child and children with SMA the tools for independence, experiences, extra curricular actives, and a way to build relationships.

So while I respond in a certain way in the above paragraph, there is more to the story. If a non-SMA parent would like to sit down and talk about Getty’s life and how it is enriched, let’s have some coffee.

Although, I will let you know now, I have become a bit awkward. I don’t speak in complete sentences now. I stare at my phone to make sure there are no emergencies at home. I might drink the coffee super fast because I need more to refuel when I get home. I also might drink it fast because I worry I will need to jump into gear if there is an emergency and I don’t want to waste that precious cup of joe.

I also might accidentally cut you off in mid sentence, because I just realized that I missed an important piece of my story earlier and I think you should hear it. 🙂 Awkward, I know.

There is more to this practical story of caring for someone with SMA. I have much, much more. While this month focuses on facts and statistics about SMA, it is also a glimpse into the practical world that has been created since diagnosis. We change with time, but I think SMA parents, in particular evolve into something incredibly different than if their child was not diagnosed.

I don’t have a crystal ball, but sometimes moments will happen and I think, would I have reacted with the same motivation or determination if I was still teaching AP US History or Government? Like would life be a daily struggle to keep my head above water? My guess is no.

My once ambitious self might not be constantly worried about my child’s oxygen levels or HR. I wouldn’t be worried about the exact calories they are consuming. I wouldn’t be apprehensive during doctor visits of any kind. I am not sure where my worry would be placed. I’ll never know.

But I know that I am thankful for a group of families that do get it. We are spread around the world and while that is a comfort, it sure would be nice to be a able to walk across the street and have a cup of coffee with a SMA mom that just gets it. Man that would be nice and so healing. 

So if you ever pass by a mom randomly walking the isles of a grocery store who might look as though she is in a fog, just say hi and throw her a smile. Whether she knows it or not, just getting out was the best thing she could have done for herself that day. Even with the fog, even with the panic, even with the brain dump, she is getting some unknown rest before she goes back into the bunker.

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