Many, many, many, times in the past eight and a half years since Getty’s diagnosis, I have had moments in which I feel as though I am on a different planet. It is not uncommon to be out in the “real” world and just feel out of place or uneasy. Spending most of my life since diagnosis, indoors, offers a sense of isolationism that can be, well isolating. You’d be surprised how much I have missed in regards to basic trends and generational shifts. Areas like fashion, basic conversations, what season it is :), and maybe the most interesting is just culture. I am definitely getting older, that is for sure. So in essence, the “bunker” metaphor I spoke of in an earlier post, is certainly a true representation of how it feels to be outdoors, to be among others, to function as though you are an individual that is a consistent player and contributor to our society. Faking it to make it is truly my motto for that span of time I am among others. It brings some anxiety, it brings a level of euphoric inspiration, and it brings some situations of feeling completely out of place. If I can take a moment briefly and say this……fanny packs are back? When and why did that happen? If I can briefly contribute to my society right now, can I just say, no to fanny packs! 😉
As time spans on this journey, luckily we meet people on our same planet. Sometimes it doesn’t have anything to do with SMA, it just comes in the form of shared vocabulary, common themes of feeling out of place, and/or the intense lengths one must and will go for their child on a minute to minute level. Because it is intense and it is a minute to minute level. I was realizing the other day that I literally can’t make a mistake. In caring for Getty, I am not offered the ability to make a mistake with her care. And I know writing that sentence, many families that care for any medically fragile child would relate.
So where to get relief from a really intense life? Well I find that my relief comes in the form of laughter. Sometimes the laughter comes from acknowledging the insanity of it all. Laughter comes from knowing that you are not alone. Laughter comes from the acknowledgment that there are currently other families feeling and thinking the same thing. Laughter comes from the smile, the communication, the effort of determination, and love of your child. Laughter offers a brief respite to it all.
So a few months ago I asked the SMA community to finish this sentence. “You know you are an SMA parent when….” I asked this question in an effort to create some sense of community. It can be a sense of relief when someone else offers a shared experience, trauma, celebration, and just a feeling of understanding. I would like to thank all of the families whom contributed to the list.
“You know you are an SMA parent when…………………..”
-You clean out your bag/purse and find suction catheters, empty saline and albuterol containers.
-You look at a toy or device and immediately think how to modify and adapt it to make it work for your child.
-You always know your child’s weight, height, how long they slept the night before, how much food they have consumed, and whether they have pooped that day.
-Just the mere thought of any child not wearing a pulse oximeter, regardless of SMA makes you freak out.
-You consider people part of your family that you haven’t even physically met yet. They can relate so much more that your own family.
-You hear every single beep/alarm in a crowded place and no one else can hear them.
-You find different uses for supplies. Making pancakes with a 60cc syringe. 🙂
-Everyone around you looks like a walking germ.
-You find a bigger Tupperware container that can hold more then the one before.
-You carry a can of Lysol in your purse everywhere you go.
-You know lockdown starts in October and lasts until March.
-You ask EVERYONE if they are sick or have been around anyone sick before making any plans outside the home.
-Checking out every location to bring your child to in advance. Is it truly ADA compliant, is there shade, is there an easy enter and exit? Will your child be able to see given their eye level?
-The principal at your child’s school refers to you as, Mama Bear.
-You are planning a vacation and spend over 3 hours calling restaurants in the area for appropriate ramps.
-You hear your child cough and you immediately go into “sick mode”. Making sure laundry is caught up, medication organized, vent batteries and back up are charged.
-Coffee isn’t just your friend, it is your spirit animal.
-Your idea of going out to get a break is stopping by Walmart AND Target in the same day.
-You get to finally meet another SMA family. There is an immediate connection and comfort.
-You notice every singe cough and sneeze within a mile radius.
-The anxiety that is nearly crippling if you go out in public and don’t bring hand sanitizer.
-You wonder when your son is going to ask you what’s wrong with him and as a family we need to figure the most empowering way to explain SMA. Because nothing is “wrong”, it’s just different, but you still need to address his concerns.
-You use make up organizers to hold medication and syringes.
-You aren’t aware of the clinching of the teeth or the speed in which you are communicating with someone.
-Supplies are delivered and the order is accurate, it feels like Christmas.
-I have deemed myself the Parking Police.
-There is a part of you that feels in disbelief at the beauty of your child. “How did I get so lucky?”
-You sleep on the floor or in a chair next to your child as they sleep.
-Your child’s birthday is the most important day of the entire year. You celebrate like crazy!
-You learn how to fight insurance companies for EVERY SINGLE THING you need.
-You run to the aide of a child that is coughing that you don’t even know because you think they are choking.
-Every single milestone achieved is HUGE.
-Even a uneventful day can still make you feel uneasy.
-You don’t shake hands with anyone anymore, and there is an awkwardness that you try and fix with a smile without having to explain why you didn’t shake their hand.
-You know more about your child’s care and health than ALL of their doctor’s.
-Watching your child gain/retain strength after being on Spinraza makes you cry with happiness every single day.
-You hold every single person accountable for their responsibilities for your child. You are “that” parent and you are extremely proud of that title.
-Can troubleshoot a problem fast and without breaking sweat.
-Your connection to your child is the most amazing feeling you have ever experienced in your life.
-When you “school” your child’s doctors on your child’s condition, not the other way around.
-You are too familiar with the PICU and the nurses.
-You know exactly how much fluid volume your child is getting.
-You remember every single important need for your child, but you cannot remember what you did on a daily basis.
-You are intimately conscious of your child’d breathing pattern.
– A resident says “what do you know? You’re just a mom!” And your head spins around like the exorcist.
-Every single sock as the toe cut of it for their pulse ox.
-You spot a possible fellow neuromuscular family and you sprint over to introduce yourself.
-You’re child’s OT goal is to independently use their middle finger, you fully support her.
-You still use the baby monitor even though your kid is a teenager.
-You argue for your child’s care in a room full of medical professionals.
-You are always late to everything.
-A family member offers to “help” you pack and you insist you do it yourself so you don’t miss anything.
-You completely disinfect a “clean” hotel room.
-You go to the park with your child and you cry when you see all of the kids playing and running.
-You feel as though you are winning at the game of Life because you have all the medical supplies put away and cardboard boxes removed from your entry way BEFORE next month’s supplies come in.
-You threaten to put your son’s power wheelchair in manual mode if he doesn’t slow down!
-Your other children are trained better than any of the nurses the agency sends out.
-The state of fight or flight become normal and normal life becomes kind of boring or hard to live.
-You refuse to fill out your baby’s/ child’s development questionnaire at the pediatrician’s office because basic milestones no longer exists for you….. however, at home you capture every tiny new movement with joyful teary eyes.
-You do absolutely everything in your power to make sure your child can access all activities, even if it means you pick them up to run through a tunnel, swing, jump, twirl, and skip.
-You are so nervous that the other kids will not welcome your child as just one of the kids.
-You don’t take no for an answer. Never, because there is always a way.
-Your child is THE priority and whatever is around has to and will wait until they are comfortable and safe.
-You’ve actually thought about going the a medical field like nursing, RT, OT, SP, PT.
-You are thankful for every single day.
I think that last response is a good place to end the post. I would like thank all of the parents/providers for their insight. My guess is that many of these quotes above ring true for many and hopefully provide some comfort knowing that you are not alone on this journey. There were many more quotes and I have saved them for a possible Part 2 post.
My hope is we all walk with one step in front of the other and are thankful for every single day.
We cannot control our excited in hearing the amazing news of how successful Bucks for Kids was on Sept. 29th at area Dutch Bros. Coffee. In order for this exeunt to be successful, we start at the top. Thank you to the Grubbs family and your incredible staff. Every single year you have been kind enough to choose Getty Owl Foundation, we are always so appreciative of your gracious offer. The day is always a celebration and it starts from you as a family. thank you so very much for keeping Getty in your hearts and understanding how SMA affects so many families. Thank you for giving us a chance to continue to support those in need. Love you guys!
I hope everyone in the area understands how Dutch Bros. Coffee affects people all around the region. Yes, they sell awesome drinks, but thankfully they also offer a commitment to their community. They see a need and they act with such generosity. Thank you Dutch Bros. Coffee, the Grubbs family, the incredibly awesome staff, your customers that makes all of this possible. You ALL helped to make Bucks for Kids an absolute success!
We are so fortunate enough and thankful to have been chosen again for Dutch Bros. Coffee’s, Bucks for Kids. This amazing annual fundraising event is something that we here at Getty Owl Foundation, depend upon. Because of the amazing support from Dutch Bros. Coffee, Getty Owl Foundation is able to continue to purchase medical supplies, life saving medical devices, and iPads for SMA kiddos to help bridge the gap with communication and academic needs. For a 100% volunteer nonprofit, every single donation is important and is used in a way that best helps the SMA community. Gaining the funds and having the autonomy to support SMA families in such custom ways has truly been a beautiful experience.
Thank you so very much Dutch Bros. Coffee!!!!!!!!!!!!!!!!!!!!!!
We hope everyone in the Sacramento area can stop by one or all the following locations and helps support Getty Owl Foundation this Saturday, September 29th. We thank you all in advance for your support and we hope you enjoy a great espresso drink………because they are ALL amazing!
The fundraiser is all day and night. Stop by and grab a drink or drinks from any of the below locations.
Citrus Heights, Fair Oaks, Sacramento Locations:
8552 Madison Ave.
7445 Madison Ave.
5289 Auburn Blvd.
4625 Manzanita Blvd.
The game changed on this day, last year. A blanket of emptiness, a fog of disorientation, and an overwhelming feeling of loss was plentiful and overwhelming. Reagan departed from her physical existence on this day. Shannon and Randy, her incredible parents were now without her and there was just nothing fair about it. It was unkind, it was unjust. A saving grace was that their family and friends came with such immediacy, it was a beautiful offering of love and comfort that must have brought them such reassurance.
If you have ever met Shannon and Randy, you would know that even with a diagnosis so grim, there was never space or energy to acknowledge the possibility of losing Reagan. They always focused on the present, the now, and the tangible. They also welcomed family and friends to meet Reagan and each were welcomed with her special spirit and she was brought into their homes and hearts. We got to witness dance parties, milestones, outings, birthdays, hugs, kisses, and life. Their ability to see through any adversity and still focus on the good and the optimistic, offered such positivity into the world and it was infectious.
Because of their selfless offerings, the world got to meet Reagan. This larger than life human being. A true spitfire that could flirt with you with just a slight wink of an eye. She could hypnotize anyone with the slightest of ease. Reagan had the power to just make you want to do better. Be a better friend, be a better contributor for your community, just be better, whatever that meant to you.
All kinds of people come into your life and if you sit still long enough, you can feel a presence of energy from certain people. You can call it what you wish, but I like to think that while there is good in all of us, some people have the ability to use their presence to create change. Reagan did that with such ease and grace.
While we can’t begin to know what Shannon and Randy are feeling and thinking on this day or any day for that matter, you can be certain and comforted knowing that they would want everyone to take a moment today to remember this incredible human being. Remembering the sweet coos, the eye rolls, the smiles, the determination, and the unconditional love, Reagan offered to everyone.
We miss you Reagan. We miss you so very much. Please continue to make yourself known by a beautiful sunrise, a gentle breeze, or in my case, a spunky little hummingbird that sneaks up on me while watering the plants. It perches just long enough to be noticed and then it is gone as fast as it was there. I say thank you and I love you every time it makes it presence known.
Shannon and Randy, you hearts are so vast and welcoming. You continue to contribute to your community in ways that inspire people to do better and to do more. Thank you for your selfless offering of Reagan. Thank you for sharing her with so many. Thank you for allowing so many to see into your world of life and love. Today like everyday, we honor sweet Reagan. Love you guys!
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.
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.