Month: August 2019

I feel intimidated.

This is not a frequent occurrence for me. I tend to go for things. I make a decision, take the steps, walk the walk, make mistakes, fix the mistakes, do the thing. In fact, today I deadlifted with my trainer at the gym. I have been working up to this for months and it was my very first time. I am so proud of myself.

But somehow, I am sitting here, staring at a box across the room and I have to admit, I’m intimidated. Which is why, although I have had opportunity, I have yet to open the box.

If I open the box, the unknown path begins. I have to unpack the box, pull out the stuff, set up the thing, figure out how to operate it, practice and make mistakes, fix the mistakes and make the thing. Hmm… very similar to how I created this blog.

What am I committing to doing when I open the box? I am going to MAKE my son’s back-zipper pajamas. And I don’t know how to sew (except for the occasional hard-won button). And I haven’t a clue how to use a sewing machine. But a brand new sewing machine is sitting in the box.

WHY IN THE WORLD am I doing this? My son, Kai, who is seven years old and has special needs, needs pajamas that he can’t get into. To keep him out of his diaper. Which, when he gets access to it, can mean a horrific cleaning event at 3 AM. Or 3 PM. So we bought them. There are few companies that make them. The prices are high and the shipping ridiculous. The quality is sub par. But we finally found a company that made them well. And they lasted. Except now Kai has grown. So we need to get bigger ones. And, of course, that company no longer makes them.

I can have them shipped from England for about $60-$80 American. Plus shipping. I can buy them Made In America. I did. Sorry, but they suck. The arms are too slim, the body extra long. They are flimsy. That was only $32. Plus $8 shipping. For one pair. Like having a baby, there are often nights where one pair just isn’t going to cut it.

This ongoing fiasco is annoying and upsetting. We never know where or when we will find this item and it is ESSENTIAL. Don’t see how back-zip pajamas could be essential? I invite you to come care for Kai for 24 hours without them. But you have to clean up the mess. Deal? I didn’t think so.

After asking everyone under the sun if they could possibly make these, after asking for lessons from my former neighbor’s mom (who graciously tried hard to show me how to sew but I had a sub par, hand-me-down machine older than me that we found out later had a broken tension setting), after spending money for not much product with low quality, after cleaning up more messes, I am done. If I learn how to make them, I can make them for Kai for the rest of his life. Growth spurt? No problem! This is the vision.

I KNOW THAT I WILL CONQUER THIS. I AM LIVING THE SPECIAL NEEDS LIFE. IF I CAN MANAGE 24/7/365 CARING FOR A CHILD WITH 8 DIAGNOSES AND CAN WORK UP TO A DEADLIFT AND HAVE A MASTER’S DEGREE IN EDUCATION AND CAN MOVE FROM BEING A NATIVE NEW YORKER TO LIVING IN A MOBILE HOME IN THE MIDDLE OF THE WOODS IN EAST TEXAS, I CAN DO THIS.

Damn, that box is intimidating. It’s like it’s looking at me, going, what? You scared?

Yeah, I am.

The last time that I really attempted to sew was in Home Economics class where Mrs. Gagliardi had us make cat pillows. My thread got all bunched up. My cat pillow had large gaping holes. It was a disaster. I was 12. I am currently 46 years old.

I have been thinking lately about fear of the unknown. And how it pops up at the most interesting times. For some reason, I fear failing at this endeavor. Maybe because I feel like the stakes are high. Nothing else has worked. What if THIS doesn’t work? That’s a lot of pressure to put on myself. I mean, I know I’m not Suzy Homemaker, but, damnit, YouTube even has a tutorial that shows how to take MY EXACT SEWING MACHINE MODEL out of the box and set it up. It literally shows you where to plug in the cord. It ain’t rocket science.

Isn’t it funny what makes us suddenly pause? Freeze?

No matter the endeavor, the process is still the same. You set the goal, figure out the steps to get to achievement of the goal, START, take the steps, make mistakes, fix the mistakes, KEEP GOING and eventually you achieve the goal. I think that there are two steps that are the hardest. One is STARTING. The other is KEEP GOING.

I haven’t STARTED. Even though I know that setting up my new sewing machine, the one with the perfect tension setting, sitting across the room in the box, will be simple. After all, a female who looks about TWELVE YEARS OLD made the YouTube video and broke it down to the point that the steps would be too simple even for a dummies or idiot’s guide. Just FYI, I am a huge fan of guides for idiots and dummies.

I also am worried that I will make a mistake in the middle of the project and won’t be able to figure out how to fix it. I envision tons of bunched up thread, fabric crushed into a three dimensional shape and accidentally sewed that way. And then what? What will I do then?

Intellectually, I know that I’LL FIX IT. Somehow. Or start again. Or find another YouTube video. But, emotionally, I have fear.

Fearing the unknown, the new, the untrodden path, IS NORMAL. We all feel this way sometimes. About the strangest things. I am NOT afraid to admit that I have these feelings. I mean, don’t you have them sometimes? Didn’t you have fear of the unknown when you found out that the one you love most in the world was going to be different than you anticipated? And you had never been a caregiver before. But, you’re doing it, aren’t you?

Yeah. Me too.

So right now I am a dreamer. But THE DIFFERENCE BETWEEN DOERS AND DREAMERS IS ACTION. So I have to force myself to START. And then to KEEP GOING.

One day (hopefully soon) I will look back on these feelings and laugh as my son runs around the house in his back-zip pajamas, smiling his sweet, amazing smile. Right now, I am staring down a box.

The box cannot be allowed to win. The box WILL NOT WIN. Hand me the remote. I need to look at the YouTube video again. And START.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

You have a child with special needs. Things have settled down. You are getting into your groove. And you are starting to think – I want to start a project. Or, I want to work. Or, I want to do some of the things that I used to do that made me happy, like crochet a blanket or write a computer program or draw or paint or whatever it is that you do. But things are different now. Your whole life is different. How is this going to work when your attention is in demand so much and so often?

This is the spot that I was in last fall, when I decided that I wanted to start this blog. And, today, more than ten weeks ahead of schedule, I am writing this – my ONE HUNDREDTH BLOG POST. As I reflect back on how this came to fruition, I see the similarities and differences in how this happened compared to how it would have gone in the past.

I had wanted to start a blog for YEARS. But I kept putting it off because of one thing – technology. I have always been behind the technology curve. It wasn’t, and isn’t, my strong suit. But writing has always come easy to me. In fact, it only takes me maybe 10-20 minutes to write a blog post. Publishing it and posting it on social media can take up to an hour sometimes. And, if I decide that I want to change the color of the background of my blog? That could take me HOURS to figure out.

But then, a MUCH YOUNGER former colleague started a lifestyle blog. And I looked at it and I thought COME ON!!! YOU CAN DO THIS TOO!!! IF SHE CAN FIGURE IT OUT, YOU CAN FIGURE IT OUT. The blog was fabulous, because, of course, she is fabulous.

So, I did it. I began.

I don’t have Microsoft Word on my computer. So everything that I have written, that’s right, 100 posts, have all been on WORDPAD. Which means there is no spell check. Which means, if I don’t catch the error, the error will appear on the blog. Why haven’t I gotten Word? Because then I would have to figure out how to install it. So, I keep avoiding it.

My blog isn’t configured the way I want it to be. It is not as user friendly as it could be. It is not easy to see that there are 100 posts. I need to change the format. But this requires endless hours of research. And so, for now, it remains as is.

It is NOT perfect. BUT I DID IT!!!

I wanted to support other caregivers. I wanted to let them know that they are not alone on a journey that feels deeply personal and specific to them and LONELY.

So, how did I make this happen while living the special needs life?

If you think back to before you were a special needs caregiver, when you started a project you may have structured it during “normal” hours. You may have given yourself a “reasonable” amount of time to get the project done. You may have structured time periods into your day for undisturbed work time. It might have had a few bumps in the road but mostly have gone smoothly. This was how I used to do things.

Let me tell you right now, that this journey did NOT look anything like what I described above.

My husband was an incredible support as I researched how to begin. This included looking at books written for dummies and idiots, asking friends and researching online. And, when all else failed (and it often did), my husband would look at YouTube and tell me how other people were doing what I wanted to do. Except, if the YouTube post was a certain age or older, the technology that they used was obsolete. Or updated. Or different. Or something.

It was incredibly frustrating. As I continued to plug away at figuring out just how to START, there were many moments of self-doubt, something that I had not struggled with in the past. But I hadn’t slept through the night more than a handful of times in years, I was endlessly distracted by being a special needs caregiver, plus a mother to typical children, plus my husband was sick, plus my mother had passed away from Alzheimer’s disease in 2014, plus at one point we were homeless, plus, plus, plus… I wasn’t the same person that I used to be.

Guess what? Once again, like when you are living the special needs life and get thrown a curve ball, I established my new normal. Again.

Where before I would sit down to a project and get it done in what I considered a reasonable amount of time, now I had to do it in short blocks of time. Also, the amount of time allotted for something to get done needed to be longer. I needed to take into consideration that when I am writing or publishing or posting on social media that I may have to stop about every two to seven minutes and clap for SuperWhy. And, because my son loves repetition, I may have to literally do this TWO HUNDRED TIMES. For the exact same part of the show that my son loves to reset his tablet to (and how proud am I that my son can OPERATE his tablet? But that’s another post).

Work hours? There were a couple of months where my son woke up every single day at 2 AM. And he got me up. For the day. So after settling him in with some milk, guess what I was doing at 2:10 AM? That’s right. Writing. Worried about me being exhausted? I slept. At 1 PM, while he was at school. Too tired from the early start to work then.

I set myself a goal of 100 blog posts in one year. I figured that there would be times where I was on fire and would write every day. And that there would be other times where I couldn’t put a word on a page. I think my former self would have doubled that number. But that would have set my current self up to fail because now my life was structured differently and caregiving comes above all else. Don’t I sound like twins? When I post this, as you are reading this, my goal has been met. About ten weeks early. I set a goal that I could reach.

Where in my former way of life I would have sped balls to the wall toward my goal, in this incarnation of me, I would burn out so much faster. There is only so much of me available after my most important job, caring for my son and family. I need to budget what’s left of me so that I can sustain the project over time.

This has been an incredible learning experience for me. To know, firsthand, that we can reinvent ourselves at any age is incredibly empowering. I wanted to create a safe place for our community, the caregivers of those we love most in the world, to see themselves. To see that yes, what others are experiencing are specific to each situation, but there are also lots of similarities, especially in the caregiver experience.

We are not alone. We have each other.

I am honored every time you come to the blog, every time you read what I’ve posted, every time you engage in the ongoing conversation. Thank you so much for being here and doing this with me.

Here’s to the next hundred blog posts!

Coming soon: THE BOOK!!!!!!!!!!!! A book for the new special needs caregiver. Because no one handed me one when I first started on this path. I am hoping this will be the book that I wish someone had handed me.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Especially if you are new to living the special needs life, you may be wondering if you have what it takes to be a special needs parent or caregiver. You may look at other people’s families and wonder if you have the ability to really DO THIS. Special needs parents are warriors. How can you be one too?

We aren’t born this way. Special needs parents are MADE. They say that we are strong. They say that WE are “special.” They say that we are exceptional. They are right. But we didn’t KNOW this about ourselves, until, well, we didn’t have a choice.

We are flexible, resilient, resolved, strong, loving, caring, knowledgeable fighters who protect those we love the most with a level of dedication that many can only dream of. We get knocked down, physically, emotionally, mentally and spiritually, over and over and over. The difference between us and them? We ALWAYS get back up. We HAVE to. Someone important is depending on us.

We go above and beyond what is required while always thinking of how, in our own opinions, we didn’t measure up to our own expectations and we should have done better.

We get to a level of exhaustion that you don’t even know exists.

When we finally have mastery of our situation, I can almost guarantee, the situation will change and morph in a way we could never predict. And then we establish our new normal. And then we do it again. And again.

We LOVE on a level that many don’t aspire to.

It is the best and one of the toughest jobs in the world. It is 24/7/365 in a way that being a parent of a typical child just isn’t.

We are rockstars. We are warriors. We are always ready to fight for the win.

Whether we have slept or not. Whether we are motivated or not. Whether we haven’t had a break in years, or not.

This is not a gig for the faint of heart.

If you are wondering if you can do this, the answer is YES. It is a sign of strength and intelligence to question it – it’s a huge undertaking. But you can.

I am so proud of us. Whether you are just beginning your special needs life or have been in it for a while, you are on an incredible journey. You WILL succeed.

All you need is your incredible child and you. Dig down deep and love them with everything you have. I promise, the rest will fall into place.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!