It is ironic that the people who started out blogging introduced others to blogging…only for those OTHERS to be incredibly successful at it! I am thinking of how I got introduced into this new world, its impact on me and those around me.

I accidentally discovered that my sister-in-law had a blog. That was pretty cool so I popped in to have a look and was hooked. By that time she had introduced HER sister to blogging…and many of you might know that blog as Restyled Home. As word of my blog got out, MY sister started a blog. Book lovers might recognize her blog; You Can Never Have Too Many Books.

These two blogs have endured to become widely read and appreciated. The two original bloggers? Well, we have kind of petered out and I’m considering quitting blogging myself. I’ve been reading a lot of blogs over the past while and there is one difference between successful blogs and those who kind of meander through it all; a passion.

Whether it’s a passion created from a love for something, a need, a critical situation…. but there’s a passion to share. My sister loves books ~ hence her blog. My sister-in-law loves interior decorating and decorating well on a budget. Other blogs I’ve been drawn too have a focal point. Whether it’s surviving cancer, testing recipes, sharing a love of something, there is that underlying theme.

Orginally I started out on another blog and my theme began as writing about Asperger’s Syndrome. Or, living with someone who has it. After a while I became concerned about a couple of important factors; sharing the life of my child when he really didn’t participate and focusing on the negative aspects of this Syndrome. Neither was a healthy attitude and I didn’t like how my blog seemed to bring out the worst in my life. So I started another one and switched over – to this one. I made it more for connecting with family and friends. However it hasn’t turned out that way. So now I consider whether to continue or not. I, along with my family, are going through some adjustment periods and tough times right now. But I can’t share it. With anyone, really.

Some things need to stay private. Even those closest to us are not aware of some things and this is the way it has to be. By nature I am outgoing and tend to share, so this changes my nature. How I perceive my world and its relationship to those around me changes and it isn’t always for the better.

I wish I had something I was as passionate about as some of these bloggers I love to read. Everyone else’s life seems so darned interesting and news-worthy. I have many interests, from scrap-booking to movies, books, cooking…*sigh*…. just about everything under the sun. My objet d’amour however continues to be people. I like to people watch, people picture-take, look at relationships, etc. Maybe it is because I’ve had wide-ranging exposure to different societies and situations.

At present I sometimes feel like life sucker-punched me again, when I wasn’t looking. Although I know there are many blessings in my life and I’m trying to stay positive, there are issues that are ongoing. Unfortunately when these things happen and take over, they trickle into all aspects of my life ~ even writing. Either I share what is going on or my writing is empty and non appealing, even to myself when I proof it.

The other side of a blog is the access it gives. There are things I could say but there are people I don’t want to see it. My intention is never to hurt another; there is certainly more than enough of THAT out there in the world. My feelings and observations however might do just that and so I choose not to share, to spare that possible outcome to those in my world.

People, for the most part, do not understand what our lives are like. If you aren’t a regular part of someone’s life and peek into it constantly, there is much you do not see. How many times does a person find out some shocking piece of news, long after a fact, and just couldn’t believe he or she just didn’t know? Each of us and each family, has a public persona and a private one. The one that happens when the front door closes and it is just you and your loved ones. It is usually the one we don’t want to get out because we act or speak in ways that would embarrass us in public. Every single home has its closets it doesn’t want revealed but some homes have to open those doors to get help.

Over the years I’ve had to share our private life with many, many people. From doctors to school officials, from social workers to friends and neighbours. I – and we, as a family – have been judged and found wanting, many times based on that sharing. We’ve had oodles of input about the best way to parent, how to get along, what happens as a couple in a dysfunctional family. Let me tell you something, it isn’t easy having to reveal the less-than-perfect side of your life to strangers…over and over and over and over and over….. year after year. You have to realize that professional A. and you may not get along – but can you set your differences aside to work towards a common goal? If not, can you split amicably? Then you move on to Professional B. He or she may have already heard about you….you might have heard about him/her. So now both are dealing with preconceived perceptions of the other. Or you have to explain your situation to every school official, dentist, doctor, librarian, friend, blah, blah, blah…. that you connect with regularily.

You are judged. Many times the person you explained the situation to doesn’t really get it or understand. How can you expect someone to understand a lifetime of 24 hrs a day/7 days a week situation? If you see a behaviour or hear a conversation that describes ONE act or ONE day…how can you possibly relate that to every second of every day?

In this case I am talking about living with someone who is disabled in some way, shape or form. That disability affects EVERYONE around the person. It affects us 24 hrs/day…7 days/week. It wears you down and out 1 second at a time. Because it never ends. Not ever. Not even for 1 second. You who have not been there cannot begin to comprehend what that is like. It is always in the back of your mind. It affects every single moment of each day and beyond. There is no escape there is no break. As the person with the disability or a sibling or a parent, it is with you always. Some people are by nature happy, cheeful and bring sunshine into the lives of others just by breathing. Lucky them and lucky you.

The rest of us deal with life the best we can. In my family’s case, my children just turned 15 and 16. They aren’t considered children anymore and are slowly moving on to adulthood and all the opportunities and adventures that brings. For us, as parents, it takes us into a new world that we haven’t had to worry about before. We’ve certainly glimpsed the future here and there but now we find ourselves on the edge and are about to fall in. The next step of our journey is beginning and there is a lot of baggage coming with us. Will past predictions of our son’s future come to pass? Will both our children evolve into happy adults? Is it even fair to ask that? What makes a good parent anyway? What if love isn’t enough?

This is where worlds no longer collide. Some of us have pretty good lives, the kids are growing up well, we have friends and activities that fill our days. Good for you. Enjoy it. Carry on. I don’t think however, that my world can include yours if it invades my life though. Blogs are easy ~ I can stop reading a blog, or head somewhere else for a while.

Life isn’t as easy. During my difficult times, I don’t want to hear about your happy life and how good it is. I didn’t ask for my life and I would never have chosen it. I accept it but some days there is a lot of despair. If you are not in my shoes then don’t try to imagine ~ you can’t. You just can’t. But do NOT JUDGE ME EITHER. You have no right to pass judgement on how I act without walking a mile in my shoes. Don’t you dare think it is our fault for how things turned out; that there must be something wrong with us or that we just aren’t as happy as you’d like us to be….so we make you uncomfortable to be around.

Yes, we could have it a lot worse. For that I am truly thankful we don’t. What we have is draining enough. There are some goods times and there are times that we carve out to make it the best we can. I am familiar with my house and the way my life goes and the necessity that it continue this way. I have survived, my family is surviving and so is my disabled child/teen. It is far from what I would dearly love to experience or live but that is okay.

My son’s disability makes him incredibly needy. All.the.time. 24 hours/day nonstop. It is like having a three year old constantly, in the demands on time. His neurological disability makes him unhappy much of the time and very lonely. His father and I are his sole companions and between us, his father is having a tough time. In his world, teens don’t act the way our son does. Teens don’t talk back, shout at you, throw things…. they don’t in my world either but I am more likely to see it as an act resulting from Asperger’s Syndrome among other things, rather than from deliberate behaviour.

It is too easy to forget that our son is disabled. It isn’t something you can actually see very often. When he is around his peers it becomes glaringly obvious that he isn’t aging like his peers…that he isn’t maturing although physically he is. The differences are growing wider. Son doesn’t like to read. He likes the computer, his games and tv. He wants companionship – CONSTANT companionship. And he needs to talk. He is unable to NOT talk and believe me I’ve tried. He is incapable of having a 2 way conversation much of the time, in the way that you would interact with a friend. He has compelling interests and that talking consists of his subjects of interest. All.the.time. ALL.THE.TIME. ALL….

There are many times that nothing makes him happy. When he is unhappy we all know it. Constantly. When he wants to be entertained, it’s up to us to do it. I cannot put into words the effect that has on us. Sixteen years and counting, people. No end in sight.

Hubby wants to travel. He wants to do things as a family. Uh-huh. I ask him a lot, when YOU were a teen, how often did you do things with YOUR parents? How often did you WANT to? Who did YOU hang out with?

Then I laugh. You want to travel? As a family? ARE YOU NUTS? We are NOT June Cleaver’s family – or the freakin’ Brady Bunch here! We are one dysfunctional family muddling our way through life without a script! Son does NOT TRAVEL well. That is NOT something to be taken lightly….anyone not in a good mood can ruin travel among the BEST of us! So I suggest to husband that HE travel – without us. This he doesn’t want to do. I don’t blame him; ideally I want to travel with him and the kids….and less the kids, I’d love to travel with him. It ain’t gonna happen! Not for the next while anyway!

Daughter is a young teen. There is NO.WAY.ON.EARTH I am leaving HER by herself in this house! No offense to you, kiddo, but it just ain’t happening. We can’t leave my son. He can barely handle an hour on his own without freaking or panicking. Just this past week I got a frantic call from him when he was home alone. He was utterly convinced that someone was in the house with him as we spoke.

Because he’d left his shoes in the middle of the hallway and now they were tucked neatly along the wall on the boot mat.

I kid you not. It took me 5 minutes to convince him that it was his Nanna who had straightened his shoes for him. He’d called from school complaining of a headache. Nanna picked him up and dropped him off at home; following him into the house to be sure he was okay. Nanna is a tidying-up-kind of lady and out of habit, she would have moved his shoes to the side. He didn’t believe me. Even when I told him that someone breaking into the house was unlikely to care enough about his sneakers in the middle of the floor to carefully put them away…..mamma mia!

That wasn’t the first call that day, nor the last. I had quite a few calls from him while I was at work. He did manage to be home that day but the toll was heavy on both of us. The conversations we have aren’t ones I really want with my workstation out in the open with the rest of my colleagues. I know they can hear me. I hated that I had to tell them the situation with my son, so they wouldn’t think I was utterly bonkers with these strange calls.

As soon as I get home, Son wants attention. My attention. All evening. Or all weekend. Take your pick.

He’s my buddy. I love him dearly just because he is my son. But holy shit. None of the baby books covered THIS.

My life revolves around him. There is no choice in this. I try to get time with hubby and time with daughter. Not usually at the same time because let’s face it, daughter is 15 and moving in different circles. I love my time with her – it’s just that we don’t get enough. I don’t get enough with hubby either. I love his company. I married him because I wanted to spend time with HIM.

When I have a break from son, I appreciate the quiet. The chance to think. To read….to meditate on something I’ve seen, heard or read. Anything. That time is precious to me and I need it to fill my patience quota for the next round of Son-filled moments. It takes a lot of energy to live in this house, in this situation. To fill someone’s needs…constantly….to deal with someone’s unpredictable behaviour, unpredictable mood swings, their unending disgruntlements…. it wears you down.

It changes you. I am not the person my husband married almost a quarter century ago. I am not the person I was 6 years ago; before the fallout of having a disabled child led to 2 horrible years at a job where they tried to fire me because of fallout from my son. I am not the person I was before I had endless consultations with school officials, much of it on a daily basis, working to resolve whatever issues of the day have befallen Son. I will never be that person again.

I will never be the person I thought I would become. Those career dreams? That travelling? That lifestyle? Those weekends? Not happening in my world.

That takes some adjustments and time too. I’m fine with that. I’m a wiser, more sarcastic person….probably even bitter. I can handle that too. It’s okay. However I deal with our life and if it is working, that’s okay. It’s working.

It could be so much worse.

But it takes energy and work. It has ups and downs, many times in one day. It means there isn’t much left at the end of the day since my day ends when Son’s ends. It means getting knocked down whenever something else comes out of the blue to affect this family. It takes longer to bounce back and to find a new normal, if need be. It doesn’t leave time for much else.

…..so…… back to blogging. There is no time to develop a passion for anything. There isn’t a lot of free time for anything in this busy world, even without the needs of Son! It’s a juggle all right….a jungle out there and a juggle in here! I do love to read blogs and comment occasionally but I kind of need a blog to comment.

If I leave blogland I’ll let you know. Meanwhile, thanks for tuning in.

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