Why that name

Just a quick note - I chose this title for my blog because if any of you have tried to actually go up the down escalator it is a lot of work. When my son Simon was born, I was figuratively transported to the basement. I was struggling to find out what this meant for our family, and our future. I began a journey on that day, to go up the down escalator. I know it will always be a lot of work to keep going up, but that is what I have to do now to stay out of the basement. Simon has Down Syndrome, but I am choosing every day to make life normal for him and to help us get back to the ground floor. Anytime I forget the joy and stop moving forward, I find myself rapidly descending into the basement again. Thankfully I also have an emergency stop button. He is my Creator and my Father. The One who brings the despair to a standstill when I call on Him. He is my Rock and Refuge. The One I can run to when no one else understands. It may sound cliche, but it's true, I couldn't do any of this without God. He is the reason that some days I can still smile when things are ridiculous inside. That is why the name.

Wednesday, February 7, 2018

My Sincerest Apologies



I’m assuming that you are not in a time vacuum and that you have realized that I have not updated my blog in a really, really, really long time. Seriously! Who does that? Who starts a blog to share about what it’s like to raise a child with special needs, and then just disappears for month (okay, years) at a time. Well, that’s me. Yup. I’m reading a book right now about a perfectionist, and since I know from another book that I read that my place in the birth order lends me to be a discouraged perfectionist, I feel somewhat validated. (For those of you who don’t now, or would like to use the excuse, a discouraged perfectionist is someone who procrastinates so long that they can’t do the “perfect job” so that is their reason for “failing”.) 

And, here I am, sitting in the local hotel restaurant in my crummy jeans because I couldn’t take enough time to find my “good” jeans because I just needed to get moving, writing up something for you to learn from. Oh, yes, I have lessons for you to learn from, if you are willing to listen.

I have so many ideas for posts that I may wind up blending two or even three topics into one discombobulated mess but, since you found this blog, you already know that I don’t color in the lines and I’m sometimes always a hot mess, so no surprises here.

Okay, but not okay

My husband has been preaching recently about masks that we wear. And when I say preaching, I mean literally. So, in response to his sermons, and also to other factors and people that I have been interacting with, I’ve been letting my masks slip off a little at a time. Sometimes it’s just a crack of something showing through, other times, it is gloves off, full blown, “I’ll tell you what I really think” dropping.

The interesting fallout from this vulnerability is that people keep asking me if I’m okay. I mean truly, with a concerned look on their face, or a worried tone in their voice. This tells me a few things. One thing that it could mean is that I’m actually not that bad at acting. I mean, all these years of pretending that I was okay, and here I was fooling everyone. I thought my black humour was obvious enough to indicate the struggles that I was/am dealing with, but apparently, everyone who reads my venting Facebook posts, thinks I’m actually funny. I don’t deny that I have a great sense of humour (unless it involved cold water being dumped on me in the shower or labour tub), but I guess I have more wit than I knew.

So, this leads me to ponder the question of what is “okay”. When someone says they are okay, what does that mean? Are they okay as in they won’t be hurting themselves, or are they okay in that they have professional help supporting them? Are they okay in the sense of, “I rolled out of bed, had coffee and am wearing matching socks and I even put on my best pair of dirty pants before you saw me this morning, so I’m not too bad?” Okay meaning less than good but better than bad? What is the range here? Where are the definitions for “okay-ness”? 

I’m a little nervous about sharing my level of okay-ness, because honestly I don’t feel okay a lot of the time. There are times (brutally honest here) that I tickle my kids so I don’t lose it and spank them out of anger. If I turn it into a time when I can make them laugh and defuse the anger rising up in me, then I make it “okay”. Is that okay? Or is that something that I should be seeing my counsellor (again) about? What are the red flags that I should be seeing, but keep bleaching into pink to avoid the chaos of dealing with things?

I have major lapses in memory at the moment. My judgment is impaired at times. I walk into the corners of walls in our house because my depth perception is off. I smoke my head on the door of the truck when popping a kid into a car seat, because again, I forget where my head ends and the truck begins. Honestly, some days I feel like I need an intervention. If I saw someone else acting the way I do, I would question their ability to take care of themselves.

But then comes the question of why? Am I acting this way, reacting this way, because of exhaustion? Simon gets up at night sometimes 4 or 5 times a night, just to see if I’m still there is seems. If he has a good night and only gets up once, the other two boys pick up the slack and take their turn. I’m pretty sure I have had an uninterrupted 8 hours of sleep maybe 3 times in the last 3 years. And, no just checking into a hotel for a night or two is not going to help. Then I wonder about the kids, and don’t sleep well because of the new environment.

Is it hormones? Is my body still adjusting to not nursing my baby anymore? Some people say it can take up to a year for your body to return to normal. That is so exciting! I’m counting down the days. So, what is it, and how do I fix it?

I feel like I have tried almost everything to fix it. Praying and actually reading my Bible regularly; looking after myself better than I used to; eating better; using essential oils. Yeah, those only work if I stick to it. I’m always the first one off the list of people to look after in our house.

Now we come to a new portion of the blog. A part I like to call the interactive moment. What do you do for self-care? When do you talk to people and admit that you aren’t okay?

I’m also wondering, both responsively and reflectively, if it’s okay to not be okay. Is anyone ever okay? What does that look like? With Bell Let’s Talk, just behind us for this year, when does the mental health and hiding our struggles come in? I mean, that’s part of the reason that I wanted to start sharing some of my struggles openly. I want people to know that they aren’t alone, and that the things that they are feeling are things that lots of people deal with, and it’s okay to be struggling. I guess maybe the next step in the “Let’s Talk” campaign would be to talk about when to take the talking to the next level. When talking isn’t enough and there needs to be something else that can be used or done to help.

So, here I go. I’ll throw this out there. I’m on Facebook. A lot. (Probably more than I should be, but that’s part of me being okay – knowing that there are other people out there who will notice if I post an SOS and need a laugh, or a phone call, or whatever. We’ll work on fixing one thing at a time.) If you EVER feel like you are not okay and need help, throw me a message. Or talk to someone. The struggle is real. Living life is hard. Being an adult is hard. Being a parent is hard. Being a parent of a kid with special needs is hard. That is another reason that I feel like I need to let the mask down a little bit more. Because we do a disservice to our kids, and our younger generation if we keep pretending that things are easy. I wish I would have known how hard growing up would be. Would I have listened to people who told me, or changed my choices? Not necessarily, but I might have had my subconscious feelers tingling a little when making major life choices in a way that might have helped me out a little. I guess blindsided might be a word that I would use when looking at some parts of my life. I’ve always seen “that mom” freaking out at the mall on her kid, and just assumed she was the oddball mom. Now I know that she was probably the only mom who was exhausted enough to let the mask slip a little, and not have her “public face” on. Because when we are at the end of our rope, we care a little less about who sees what, and how it looks. Because we just need to get into the vehicle and get home to bed. Or we just need to hold our child down to get blood work done, or an EKG done. We just need to do the next thing to survive the day. Sometimes we thrive, and other days we just survive.

I’m putting it out there for us all to consider. What does okay mean? Is it okay to not be okay? What do we do when we aren’t okay? How can we help someone who we see who isn’t okay?
All that being said, I need to tuck in the laptop and hope this whole things doesn’t erase before I get home, and go back to my okay but not okay day. Because real life is here, and it won’t go away.

Thanks for reading,
Have an okay day.