Dangit, Katy Perry!

 Okay, so we’ve all seen the videos of sick kids singing Katy Perry’s ‘Roar’, and everyone has claimed it as their anthem, right? No argument, it’s a great song, and when it first showed up on my news feed, it was on a survivor of Domestic violence’s page, Melissa Dohme, who I greatly admire. I heard it, and, being a survivor myself, was like “Whoah!” and would rock out to it as my own personal anthem. Then I saw the cancer kids singing it, and it was different. These kids are fighting for their lives, and yet telling cancer to kiss it, which I love.

 Today, the song hit me like a Mac truck to the heart. My son has been enthusiastically singing it when he hears it, which I thought was adorable. Today, as we were both singing it, I realized how much this song really pertains to him. He has Autism, which sets him up to be the ‘weird kid’ and has caused some comments to be made that he isn’t even aware of, but piss me off royally. That’s a good reason to her the song differently, right? Yeah, that’s not enough. He also has Becker/Duchenne Muscular Dystrophy, and I see him struggle everyday, falling more, getting tired trying to keep up with the other kids, even lifting little 2 pound weights over his head requires both hands. I’ve noticed the backwards lean that is so common in these boys, but shouldn’t be obvious until he’s 8, according to most timelines I’ve found. He just turned 7 last month. He’s in a literal race against time and his body, and there’s nothing I can do, but make him happy. Yes, I probably spoil him and coddle him, but I can’t make myself look into his baby blues, and not see what he’s facing, and be okay with causing him any sadness. Yes, I tell him no sometimes, but not nearly as much as some think I should.

I digress. This is about the song, and how it hit me like a semi today. So, here I am, singing (quite badly, of course) along with Katy Perry, and my little boy is just rocking out, rocking back and forth, and gesturing, and I realized, this is HIS song. Yes, many claim it, but this is HIS song. He may not know the battle he’s up against, but he’s already declaring that he’s gonna fight. He’s gonna give it all he has, and he’s not gonna be afraid. There’s a lot to be said for that kind of blind strength, faith, and determination. Maybe I should take a page from his book. Maybe we all should.

I posted this on the book of faces earlier today, and was encouraged to blog, so I figured I would put it out here, kind of as an encouragement to any other parents in that dark place of being told you’re wrong, that everything’s all sunshine and roses when you’re in the bushes.

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This is from when I took little man for an evaluation right after we moved to SC. He had been receiving speech twice a week for over a year, and PT almost every week (with progressions/relapses) for most of his life. When we moved, it took almost a year to find where to go to try to get him back into therapy. They were with us for maybe 45 minutes, and most of what they saw was below average, yet they stopped the interview to tell me that he was a ‘normal’ little boy, and his delays were things I needed to work with him on (because I obviously hadn’t cared enough to try). I was so hurt by the way we were treated, as though I was making up his problems, and I needed to do more for him.
Fast forward just over 3 years, and we have diagnoses of Autism and Muscular Dystrophy. This sheet of paper still makes me soo angry, I wanna hit someone and cry all at once! They didn’t even try to care about my baby, they told me my only recourse was to get him into pre-K, which, they told me was only for the poor or problem kids (they did allude that we had a chance, though). We were treated like less than human, like we didn’t matter. That is never okay.
I post this, one, because no one believed me when I told them this happened. it obviously did, and two, for the parents out there still struggling, with the questions. If you feel that there is something not right, keep pushing. I had to go through a few doctors, with a few teachers making complaints that I took to one, who finally, listened. From there, our lives have been challenged, and, yes, I wish he had an easier life, and was a ‘normal’ little boy, but he is my boy, and he is my heart, and I will fight for him every day that I draw breath.
Don’t let one person (or even a bunch of people) make you doubt yourself! You know your child better than anyone, and you HAVE to be their advocate! I dislike making controversy as much (if not more than) anyone else, but I am his squeaky wheel. If I feel that he is being shelved, I keep making noise until someone listens and tried to fix the problem. That’s what we are supposed to do.
We were given these wonderful little people to care for, and to help prepare for the world. Sometime, the world isn’t prepared for them, so we have to pave the way. Make ripples. Make people step aside and say “Wow, there goes a true Momma bear!” Hold your head high, and shout it from the rooftops, that our kids are here, and they deserve respect and dignity, and a fighting chance!

 

Random Reflections

As I sit here, at work, and think about the last few weeks, I realize that I really really need to post more! So much happens on any given day, and, if I don’t write about it that day, it is so easy for so much to get lost in the shuffle.

For instance, I learned not to follow directions on light fixtures. Several hours, and 4 rehangs later, it didn’t work, so, using what I learned about not following the directions, I hung another fixture that had been a sort of hanging lamp before, in ten minutes, and it works fine. My arms were mad about holding the first (heavy) fixture up for so long, and my feet felt as though a permanent impression of the ladder step was embedded there for a few days. That was fun. (*note sarcastic tone 😉 )

Watching my daughter blossom in our new neighborhood, making several friends already, while my son goes from disinterested to broken-hearted over the semi-loss of his best friend, has left me conflicted. Of course, I never want my daughter to be held back for her brothers sake, but I don’t want him to hurt as she grows into her own person, either.

As much as it warms my heart when he tells me that “When I grow up, and you and Daddy move, I’m going with you. Daddy said he’ll kick me out, but I’ll move in in your neighborhood so I can always be close” it also breaks my heart. I love my children, and, right now, cannot imagine life without them in their rooms in my house, but I want them to grow up, get married, and have their own families for me to love. His Autism has always been so mild, and I am so used to it, that I rarely even think about it anymore, but I know it’s there, and I know he struggles with some things more that others, and being sociable is a big one for him. When I allow myself to dwell in the worry, I wonder if virtual schooling is really right for him, or if i should have him in a school for kids like him, or a regular school with an aide, so it forces him to flex his social muscles, and step out of his comfort zone. When I think of that, though, I think of how he was bullied in pre-k and kindergarten for being so different already, and cannot fathom putting him in that kind of situation again, knowingly.

Then, when I think about his schooling, I think about my daughter’s schooling, and worry that she may be jealous of all the time I spend with her brother while she’s in school. I have offered to try virtual with her again, but she loves being a social butterfly at school, and does pretty well (if she’d focus and remember to bring papers home for me! Of course, that’s a whole other bag of beans!). I would love to do more mommy-daughter things with her, but, with my school schedule, her brother’s therapy schedule, then my job on the weekends, I’m just not sure when.

Thankfully, through all this insane-wanna-bite-my-nails-and-pull-my-hair-out craziness, my wonderful handsome hubby is there to pick up the slack, and take over when I need to disappear for a few to finish a paper or take a bath. I hope he knows how much he means to me. I try to tell them all everyday, but have to wonder sometimes if I actually said anything, or did I just mean to, and get sidetracked again by the next thing that’s been gnawing at my time?

Ugh. Well, this has been a rambly post, and I keep  meaning to take pics as I work in the house, but, yeah, not the best brain going on over here right now, so maybe soon? I will try to pop back in soon, and maybe do a post about Duchenne, Autism, a random diy project….. whatever. If anyone has any requests for what you all would like to see here, just leave it in the comments, and I’ll see what I can come up with for ya! 😉

lol (as my daughter says “Lots of Love”!)

Viv

Oh the insanity!

Ok, so sorry it’s been awhile. I’m still new to this, and have to remember to make time to post, even when life is insane.

Anyway, to catch everyone up, we put a down payment on our first place, and have spent the last few weeks trying to get it fixed up so we can move in. There’s still a TON of things we need to do, but it is (mostly) livable now, so we are moving this weekend. Actually, the Hubs and Monkey Butts are already there, but I work, so everyone is enjoying the new place out in the boondocks but me – can you hear the whine through the screen??? Totally not jealous. Nope, not me! 😉

We thought we would be able to move in sooner, but discovered that the water pipes – every stinkin one of them – had burst in the last couple of hard freezes we had in the area. Thankfully, they are all PVC, so super cheap to fix. My Handy Hubby took care of that while I did the normal mom thing, and trying to find bargains, as the new place is huge compared to what we’ve been living in.

That brings me to the old place. Not to sound bitter, but when we rented it, four years ago, the owners wanted to sell it. We offered at every lease signing/income tax time to buy it. They kept putting us off, then, last year, INCREASED the purchase price by five grand! Yeah, because the thirty-odd thousand dollars you’ve gotten from us in rent, (which you said would be put toward purchase if we ever decided to buy!) was nothing. We told them last year we’d be looking for a bigger place for us (we had dreamed of adding on a room, and doing some renovations, some of which we did, with permission, that they then decided they didn’t like and expect us to undo before leaving) so when we gave them notice that we were paying our last month’s rent, they seemed okay.

Until today. Today, while I took my kiddos to the zoo for my son’s birthday, and as the Hubs went to find a few more birthday gifts and the cake for Little Man, they pulled up and asked for an extension cord, so he obliged and let them know he had to go (I mean, we did tell them we were moving! It’s not like we wouldn’t be totally busy on a Saturday when they drive an hour to ‘stop by’ with no notice!) Anyway, I pull up before he gets back, and they were gone, but there was a For Sale sign in my front yard!

I get that they can do that. I do. It’s just the principle of the thing. We offered to buy three years in a row, only to be rejected, and before we leave, they put a for sale sign up?? Not even a For Rent, or Rent to Own… Nope, just a nice little slap, like they were waiting all this time for us to pay the mortgage off for them, so they could sell it and make pure profit, with a note on the door for the Hubs to call them. There’s a lot of history to the anger, but I will spare you that. It was just a bit surprising, and irritating. Even a friend who saw the sign and knew all that they had asked us to do before we leave (knowing we aren’t getting the deposit back, no matter what, and we paid 1st and last 4 years ago, and chose to give up the last for some insane reason that I don’t quite understand) said that was wrong. All the stuff they didn’t repair, they’d ‘like’ us to before we go. Yeah, hon, I’ll get right on that. Not! Those are all the things we tried to take care of on a limited budget, and would have fixed had rent been more manageable, or if we thought we might someday own it, but that were still their responsibility. 

Grr! Sorry for the rant. I promise my blog isn’t going to be like that. I will be uploading some before and after pics of the new place soon! I was going to tonight, but they are in my camera at home, and I am at work, so waah! We are still mostly in the ‘before’ stage, and some ‘during’ but the ‘afters’ are going to be awesome, and I can’t wait to share it all with you guys!

Reality bites

For the last week and a half since we got the diagnosis for my boy, I have been prayerfully optimistic. Research and treatments have come so far, the disease is being managed well enough that boys are living well into adulthood, and having successful lives, marriages, kids, jobs, the works. I have focused on this, almost to the exclusion of the reality of the disease. 

You see, my son was diagnosed with Becker/Duchenne Muscular Dystrophy. Because of his age, and the progression, it is likely the more severe Duchenne. When I got the call, I will be honest, it ripped my heart out and threw it in the blender. I cried. I wailed. I yelled at God. I begged for mercy, and that the tests would turn out to be wrong, or that I was having a nightmare. I called my wonderful mother in law, and got my head and heart right, so I could focus on my son, who needs me, and that is where I have been for the last week and a half, even with all the new information being thrown my way.

Until today. 

Today, we had a follow up appointment with the awesome sleep specialist that he sees, and found out that he has minor sleep apnea. Now, this is not a big deal, and if it were any other child, they would give us a choice whether to treat it or not, because it is so minor. The thing is, is with muscular dystrophy, the muscles start to break down and weaken over time, and if he is already having to struggle to breathe, even a little, we need to do something to help now. We are going to have his tonsils taken out, then have a follow up sleep study, and if he is still having trouble, we will need to look into a machine to give him oxygen at night.

That was what scared me. 

In my world, the reality of wheelchairs, breathing machines, and medicines to keep his heart healthy aren’t going to happen.

In my world, my son will continue to grow stronger every day, and have many years of being a happy, healthy, albeit clumsy, little boy.

This is not reality. I was slapped in the heart with it today. Not that his doctor was being mean, or pushing anything at me. The opposite, actually. He was kind, and honest, and when he saw I was getting overwhelmed, he pulled back, and reassured me that that is not where we are right now, but the damage was done. I saw it in my head, my son, asleep, with a machine making sure he was breathing, pushing air into his little bird chest, and it was real, and brutal, and scary, and I wish I could stop seeing it, but I can’t.

I know this is not our reality right now, but I also know that I have to accept that it is a likely reality at some point.

I am not posting this to be a Negative Nelly, but, really just to get it out there. You see, I tend to post Susie Sunshine stuff on Facebook, so my friends and family don’t worry, or, worse, block me (because, yeah. I get tired of all the poor, pitiful me posts I see from certain friends, and hide them, not because I don’t care, but because it brings me down, and I have enough in my life to do that) and leave me to cope by myself. Well, not by myself, exactly, my husband is awesome, but we are in this together, and if one of us can’t see the mountain for the molehill, the other isn’t likely to see the situation much better. That’s what friends are for.

I started this blog, because I was pushed to for Rob’s Big Losers, but intend to use it as an outlet, and to reach others who may be struggling, and let them know it’s okay. We all fall down, and we all have certain struggles, but it’s how we deal with them that makes us different.

Today, I was a bit down, but who knows what tomorrow will bring. I’ll deal with it then. For now, I have a boy who wants to play, and a girl to get from school, dishes to do, laundry to sort, and all that good stuff that I love, and wouldn’t trade for all the world.

See you all next time! ❤

Here goes nothin

   Having been a frequent enjoyer of blogs (I think I have 20 or 30 I read on Bloglovin) I have thought about stating a blog myself, to keep up with all the crazy things going on here at the house, so far from all our friends and family, and being chosen to be part of Rob’s Big Losers has kind of jumpstarted that, as I have to blog about my weight loss journey over the next few months.

   If anyone reads this, and decides to follow along, there will be tons (hopefully) about my weight loss journey, my kids, my husband, work, and whatever else grabs my attention for the moment. It will be funny, sad, dramatic (I am a woman, after all!) and real. Nothing I post will be made up, and I will try to stick to what happens in my own life, though I am sure that stories in the media will get a chance, too.

With that said, welcome to my little corner of the world, get comfortable, and if you have something to say, don’t hold back! Unless it’s negative about my kids, in which case, I will find you! Just kidding… or am I?