Hello everyone! My name is Jackie Schwabe, and I am your Reluctant Ringmaster. What is that you might ask? Well, you all know what a ringmaster is right? Well, just in case you don’t, a ringmaster is the person directing a circus performance. And well, reluctant means unwilling, hesitant, or perhaps disinclined. So, I am the Reluctant Ringmaster of my Caregiving Circus. Now, don’t get me wrong, I love my caregiving experiences and I love my family with all my heart – but I am pretty sure if I knew that I was going to be cleaning up poop colleges and looking like the bearded lady that I might have thought a little harder about taking on this caregiving thing.
You see friends, caregiving is really like a circus. A three ring or fifty ring circus. In my circus there are tons of performers. My four children, my husband, my family, my clients, and my friends all play roles in this crazy circus. As the Mom, I am always juggling what I can do now, what I can do next, who is going to be disappointed, which actor gets the attention now, and also making sure that I don’t forget to wear my ringmaster hat before I go out to perform.
Caregiver from birth?
I didn’t know it, but my caregiving started long before I had the words to describe what caregiving was. My mom had some substance abuse and other problems that lead me to help her get up on time for work and to help my younger brother to get ready for school, eat lunch, and frankly – not die. I didn’t realize that was caregiving; Yet, when my then 2 year old daughter was diagnosed with Autism, I was thrown right in the ring to start directing performances with actors and performers that I didn’t understand and was not qualified to direct. Very quickly I went from – just parenting – to something much more. Something that I didn’t yet know how to describe, but that was consuming every moment of my days and nights.
Of course, having four children, one with autism, three with asthma, and one dyslexic didn’t seem like enough to fill my days, so the universe threw me a few more circus acts to manage. Then comes the early morning phone call that my mom might die. Following that, the call that my biological father had a heart attack, then my step-dad had a heart attack, then I lost my job, then my dog died, and then my other dog died. Wow. Yes, wow. I know, that is a lot, isn’t it?
Well, when life throws you lemons you can make lemonade, or well in my case you can try to juggle it all and do things the way you always did them. You can see how that might not have been the best idea ever. Well, it wasn’t. In the middle of all this, I was not taking care of myself. I was not eating well. I was not sleeping well. The sleep thing led to a diagnosis of my own – Narcolepsy. It was actually a little bit of a God send as it made me really take the time to focus on my own health and wellness so that I could keep showing up to run The Caregiving Circus everyday.
As I struggled to figure out how to deal with my new diagnosis, my new life, and continue to direct all the other performers, I started to learn a few things. I had to figure out how to care for my very ill mother remotely. I had to figure out how to speak Applied Behavior Therapy (ABA) and how to do setup visual schedules, potty charts, extinct behaviors, and a few million other things.
I’m a Nerd
While I didn’t mention it before, I am a nerd. I have a masters degree in technology project management. I am the person that everyone goes to when they need to find a resource or get answers to hard questions. Yet, even with all these mad skills, I couldn’t find what I needed to help me manage myself, my family, and my caregiving responsibilities. I am also not the type of person to go easy into that good night. Okay, that is an overstatement. Frankly, I have narcolepsy – so at any point where I can go to sleep – I’m going to – so poor analogy – but you get it I hope.
Enter my stubborn streak! I decided that if there were no solutions, I would create one. I have an undergraduate degree in management of computer systems and a 20 year career in software integration. So, I built a solution. I made a software application as part of a startup that I co-founded. It was when the start up was forming that I vowed to never let another family caregiver struggle like I did ever again with finding the resources, tools, or support they need to take care of their family.
I made an App for That!
Check it out here —> http://mindlightllc.com/mobile-app/
Everyone said the performance was brilliant. They said that the world needed this solution. If you build it they will come. Guess what? They didn’t. Well, not yet anyway. I missed one big giant piece to this puzzle. It’s common for us techie folks to miss some of the softer side of things. I forgot that it took me 9 months to build an application before I realized that I was a family caregiver – not just a parent. I marketed my products just like everyone else – to the elusive and mystical creature – the family caregiver. Yet, that isn’t what we call ourselves, now is it? We want our crazy circus organized and help inviting performers to the show. But we want something more too, don’t we?
We want to know that we belong. Could it be true that our freak show is not as weird, unique, or as freakish as we think? We want to ask really hard questions like how do you make sure your special need daughter’s vagina is clean with she poops her pants and sits in it for hours before you know about it. How do you clean that up and make sure she doesn’t get an infection – and how do you ask that question of your friends, family, or even google without admitting that you are about to go into the bathroom and wipe some poopy crack? Are you a terrible parent because she did sit in it for hours. Yeah, that type of stuff.
My Own Personal Freak Show
So, while I was figuring out how to run my own freak show, I realized that maybe there were others out there that didn’t know what I didn’t know. I thought that there were people that might also need to go somewhere to ask really hard questions. That maybe someone else had some of the same weird performances happening in their circus.
So, I am the ringmaster. Running a software company called MindLight, LLC to build solutions for family caregivers to get the resources, tools, and support they need. I will be writing blogs to help the SEO (search engine optimization) learn that parenting isn’t just parenting, but very often caregiving too. Together we will create a new dictionary of care, so that when we all need to find resources we can, regardless of how we identify ourselves and what diagnosis we, our children, our parents, or our loved ones have.
I didn’t apply for this job
So, guys and gals, I didn’t apply for the job of Ringmaster. I never asked to be the expert on cleaning poop. I didn’t enroll in program for prioritizing self care. Nonetheless, like many of you, I am reluctantly running the show. It is my job to run The Caregiving Circus. I’ll try to help all the other performers be the best they can be – even if they are in the side show or shoveling elephant poop out of the Big Top or running the carnival games, or even if they are making the food for concessions. I am here for you, my family – but most of all – I am here for me. Because part of my self care, part of my mission, was to help make sure no one ever feels as helpless and overwhelmed as I felt at the start of this journey.
What will you get out of this? WIFM!
What you can expect from me is a practical information from my journey. As the community grows, I hope you will find others doing the same. Much of what I provide will be about self care. Why? Because I think it is the most important part of our journey. I feel it is the one thing we are the worst at. I will also provide training opportunities. You will find health and wellness tips and tricks and items in the shop. Since I have 20+ years of business experience, there will be information on how to do things to improve your business. Last, but not least, there will be resources, tools, and support for those that want it.
Thank you for finding me! Please visit often to see what new performances are happening under the Big Top. If you want to start a conversation, you might need the Megaphone – so come over here Megaphone!
The Reluctant Ringmaster – Jackie Schwabe