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You Know You Are An SMA Parent When………

From Kate:  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.   

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