Source: Duchenne… What It Really Is!
I am so hurt and confused and stressed right now, I just want to curl up somewhere and never come out. I have put over two years into a degree, so that, maybe, someday, we won’t live paycheck to paycheck, and completely flip out when something goes wrong. Of course, no one told me that when they made me switch degree programs (they ended the one I started out with) that I would have to do an externship at the end. Had I known, I probably would have quit then, and saved a few thousand dollars that I don’t have. When I started it, I had a “developmentally delayed” preschooler. Now I have an Autistic second grader, with Duchene muscular dystrophy that I have virtual schooled the last two years, due to bullying. We are already picky about who is around our kids, and haven’t had a date night since we left Florida, pretty much, over five years ago. As it is, I found out about two thirds of the way in, and am in the last term of my degree plan. I found a neighbor I kind of trust enough, for a few hours, to keep my son, while I put my hours in. I knew she wasn’t totally into it, but I had watched her kid for her, so she wanted to help out. I found out today that my kids have acted like heathens over there, like I never feed them, getting into things, begging for stuff, fighting over everything, things they never do at home. Then she said she was gonna get a neighbor to watch her daughter when she started work next week, and I offered to help her back, when I wasn’t doing my hours, and that’s when she told me. Her husband doesn’t want their daughter back down here because my daughter told them I “locked her in a room” when I was babysitting. God only knows what all she said, but I put her in my son’s room for a few minutes because she was screaming at the dinner table, I even told them when they picked her up that we had had an issue, and I put her in time out, and it was fine. She was testing boundaries. Apparently, even time out for a screaming toddler is abuse now. They’re willing to watch my son this week, but she let me know her husband wasn’t happy, and had been struggling because my Autistic son says things that he’s heard (on Youtube videos about Minecraft) sometimes that are, granted, inappropriate, and we talk to him about it, but, yeah, apparently we look like awful child abusers who lock kids in rooms, and starve kids, and let them run amok. I am so tired of trying. I am very antisocial, and make friends so rarely, and, when I do, they are for life, like family, but the ones I’ve made here in South Carolina have been awful. The people here are not like back home. They’re acquaintances, never the family/friends I grew up with, and just assumed all friends were like. I’m trying to get him into a regular school, one that has a special ed department, and can deal with his behaviors, and learning issues, whatever they are, because Developmental Peds is dragging their feet getting him in to figure it all out. The school zone we’re in doesn’t have anyone in a special needs capacity on their contact list, and I don’t know what it’ll take to get him into the one school we’ve been told is equipped and capable of meeting his needs, so I may be quitting my school now, in the middle of the last term, because I have no one I can trust with my baby, and don’t know when I might have an answer for that. I am so tired of trying, and having every damn thing fall apart. I want my mom, someone to talk to, but have no one, and I am so fucking tired of hurting, and feeling like I’m not good enough. What the hell is so wrong with me? Why is it so easy for people to use me, then hurt me? What do I keep doing wrong? I’m so sick of platitudes. It’ll all work out. God’s got this. We’ll make it through. Why the hell do people think that makes it better? Should I be grateful to know that someday it’ll all be easy, or make sense? Or be pacified that God has this? Don’t get me wrong, I’m a believer, but to brush all my pain away, because He’s here, why does He keep putting so much on me? Why hasn’t He given some sign that He really is here, some small miracle to let me know I’m not alone? I have my husband, but he’s in the fight, too, and we can’t keep leaning just on each other – what happens when we both are too weak to lift the other up? What happens when we’ve both been pushed to the limits of our everything? Who’s here to help us then? We always make it through. I know this, and I know we’ll make it through this, but some day, I just want to know that we conquered the mountains, not just survived the climb. I want to look back, and see where we bulldozed it, not dragged each other along. I just want to know that we’re not in this alone. Is that really so much to ask?
Sorry for the huge, whatever this was. I’ll maybe come back and edit it later, but, for now, it is what it is, take it or leave it, but I have to leave it here, and go feed my kids, or not, since I’m such a horrible person. I just had to let it out, and hope that someone, somewhere, will see it, and understand. If that’s you, please leave a kind word. I could really use a friend right now. Obviously.
Agh, it’s been so long since I have made time, or felt that I had something worth saying on here. It isn’t that there haven’t been things, just that to put them down, and throw them out here would be so difficult, kind of like posting naked pictures and asking your opinions (not ever gonna happen!). Anyway, life has been crazy, I’ve had a couple of manias, followed by depressions, and some breakthroughs, complete with all kinds of random, frenetically done projects, and days wallowing in my suckiness after, so yay me.
Anyway, this is not about all of that, maybe I’ll post about that some other time, maybe not; it’s still kind of hard, sometimes, to put it out there as honestly as I feel it should be. This is about my son, and living life in the moment.
This morning, after dropping my daughter off at school, when we were driving home, my son noticed the sky, as he does, and asked where I thought the sun was going to come up at. I had not even noticed that, while it was light out, it still hadn’t been sunrise just yet where we were. So, I looked at the sky (briefly, I was driving!) and noticed the highest concentration of pinkish-orange on the horizon, and pointed it out to him, but he disagreed with my assessment. This led to a detour, and lots of pointing out shadows in the treetops, and which parts of the trees had sunlight, to gauge where the sun was in proximity to the trees. It seemed that every time we thought we knew where the sun would be, there would be a curve in the road, and we would have to start looking for the sunlight on the treetops again. After about ten minutes, he was mostly bored with the game, as the sun would pop up for a second or two in the trees, but never enough that we could see it in all it’s glory, like he wanted to. The funny thing is, when we turned around to finish our ride home, the sun rode along right beside us, in and out of the trees, like he knew we had given up the chase, but he wanted to keep playing. My son said “Hey! Next time, let us catch you, and maybe we’ll play longer, stupid!”
This may seem like a rather random, insignificant thing to bring to Blogland, but it was in those moments, when we were oohing and aahing over the beauty of the fall colors, and how the sunlight hit the treetops, and talking, that I realized that those are the moments that we’ll remember, and had I just pointed out my answer, let him disagree, and took the turn for home, just because I was tired and had a cold, we both would have missed it, and that seemed important, to me, anyway.
Sometimes, when we’re in the midst of life, we stop seeing all the random, beautiful things around us. It’s easy to do. Running errands, packing lunches, wondering if this bill can wait til that check, homework, housework, all of it. I’m not saying that I am taking the initiative and going to start ensuring that I “stop and smell the roses” or anything like that, just observing that, every once in a while, something will happen, most likely so subtle you don’t even recognize it in the midst of the daily chaos, but, later, when you’re cleaning up dinner dishes, or playing Farmville before bed, you’ll have a little light bulb moment, where you think about that thing, and can’t help but smile.
Sometimes it’s an observation from someone, in the form of simple praise or a smile when you’re exasperated with kids or busy stores, others, it may be something your child said or did that you didn’t really catch in the moment, or a kind act that you were too frazzled to say thank you for.
It doesn’t matter what or who, just that, when you do think about it, and get that little smile and warm fuzzy feeling, say thank you for it. They won’t hear it, or even know, but acknowledging that you saw the beauty to the universe or God, or whatever you believe, I think that it helps it keep moving. Maybe that person didn’t realize they did you a kind service, but it makes you wonder, how often have you been that person, giving a little unobserved beauty, that will dawn on them, hours or days later, and encourage them?
This is not the post I came on to make today. The original was snarky and a little backhanded, towards someone who has tried to create petty drama for me for a while now, and how pathetic it is that they haven’t gotten a life of their own yet, but when I read through some comments on a post I replied to, it brought to mind how much better life has been since I got that toxicity out of my life, and how the simple kindnesses of strangers, or our kids, can shine beautiful light in our otherwise chaotic, muddled lives, and decided to change course and focus on that.
So, with that in mind, you, whoever you are, wherever you are in life, are amazing. You are a beautiful soul, capable of great things, and I hope that no matter how insane your day has been, that you have had that moment of beauty, and that it gets you through to the next one. If you haven’t had that yet today, I hope, maybe, this can be it. Life is beautiful, and we are life.
You know how, sometimes, when things are bad, all you can see is the bad in your life? The bills that are barely paid, the random groceries that make no sense together, but you cant afford to go to the store, the things that you need, yet have no idea how you will get them… Anyway, whatever bad thing you deal with, and you start to beat yourself up, and just wanting to quit?
Yeah, I’ve been there the last few days, and it sucks (I’ve told y’all I’m bipolar, right?)
Thankfully, I have learned to see the cycle, but it makes it no easier, really, to keep a grasp on things, and not let myself sink into that warm, dark place, where I am worthless and the world would be better without me (hang on, I’m going somewhere, I promise). I have learned to truly picture the world without me, and, while most of you really wouldn’t notice (I’m no narcissist, for sure!) I know my babies would, and it would be hard for Chris to do all that I do, and still work, and be so far from family, but going back home is not an option, because all of Asa’s specialists are here, and none of the ones in Pensacola would care quite as much as the ones he has here do, and, besides that, I wouldn’t want his care to be sacrificed because I am having a weak moment, so I know I’ll push through for them.
I have also noticed that when I get like this, I lose focus on the struggles of others for a bit, and actually become jealous of those that seem to have it better than us at that moment, even if I know that they are struggling, too. It’s a crazy blindness, and it sucks. That is, until something happens to break through the dark curtain and pierce my heart for someone else.
Today, that happened, and I wish it hadn’t. Today, when I logged on, I saw that one friend, who just lost her aunt, lost her baby nephew after a long battle with cancer. Another friend, who has a very premature baby, watched yet another family lose their angel. He was so tiny. Another’s husband is struggling to survive.
I saw all of this, and started crying, not just for them, but for myself. How can I be so self-absorbed when my problems are really nothing compared to theirs?! Yes, I have problems, and they are real, and they suck major balls, but I will get through them, like I always do. God has carried me through some pretty dark places. But, I have today. I have my children, and they are happy, and healthy, and they are loved and loving. I have enough food for them to have their three meals today, maybe even a snack. I have gas in my car for Asa’s appointment, and the wheelchair van, while it is a need, it’s not an immediate, right now, need. It will be a few months, from what I understand, to get his power chair, and, if it has to stay parked in my living room until we save enough for a used van, or a down payment on something not quite as old as I am, it will work out, I don’t know how, just that it will.
My current problems will pass. They are nothing compared to watching my child die (and I pray daily for a cure for MD, so I don’t have to go through that. I am that selfish) or my husband struggle to survive, while I also worry about all of these things, since he’s the breadwinner, and if he didn’t make it, I’d really be in a spot, having to choose between my kids care and survival. I pray I never have to go through that, and that I can prevent him from going through it because I allowed my inner demons to win.
Today, I fight. I fight to regain a bit of happy, a bit of self-love. I fight to prove that I am stronger than those voices telling me I am weak and worthless. I fight to show my kids that they are worth living for. I know the demons will come back; they always do, but today I fight them, and that makes me just a bit stronger next time they rear their ugly little heads, and that’s all I can do.
Side Note: Some of you may wonder if I am on medications for depression of bipolar – I am not. I have tried several, but because my swings happen so sporadically, taking medications to equalize my moods tend to make me very blah, kind of robotic, and to not care at all. Basically, they take all the quirks that are me, and push them down to where I am a very numb person, and that, to me, and to my family, is worse than dealing with the cycles when they appear. On meds, I don’t care at all, like, if my house were on fire, and my kids were in it, I would take a nap. Without meds, I may be a bit erratic, not caring about some things, then blowing up next time it happens, but I feel, and it’s better to feel something than to feel nothing.
Okay, so life has been insane, and I promise to update on some of it soon, but, for now, I have to make a horribly embarrassing request, and hope that this fledgling little blog doesn’t lose any followers, and that those who follow me have seen my posts about my son, and understand, possibly even sharing this….. I hope.
Asa has been ordered a power chair to get around when we are out and about now. He is still walking, and we want him to continue to walk as much and as long as possible, but the reality is, he gets tired very quickly, and has outgrown the stroller we bought to get him around in. This means that, for the last few months, aside from doctors appointments and trips to the grocery store, we stay home. We have started the process of getting his power chair (they usually start with a manual, but we live in a very hilly area, and he doesn’t have the upper body strength to propel a manual chair, and having someone push him defeats the purpose of having a chair. A wheelchair for non-ambulatory people is like legs for us walking folk. How would you like it if you could only go where someone took you? It would be very frustrating in no time, I’m sure)…..
Anyway, we have started the process of getting him a power chair, but our current vehicle is not only not equipped to carry the power chair around, it is old, and nearing the time to scrap it to get the most return on it (sad, but true, 250k+ miles on it and almost 20 years old) so we have started a couple of fundraisers to raise money to purchase a wheelchair accessible van.
The first one, here, is an online fundraising site, where you donate money, just for the joy of helping.
The second one, here, is for a tee shirt designed by another Facebook user, who has generously offered 60% of the proceeds towards helping us purchase a van.
I am not asking anyone to donate, or purchase anything. If you can, that is awesome, and I will do something, like dance to “Happy” (horribly, by the way, just so you know what to expect) or have Asa make a Thank You video and share it, to show how much we appreciate the support, but if you can’t help financially, I totally get it (I am, after all, so broke that I’m shamelessly begging strangers for money!) but ask that you share the links on anything you think may help, be it Facebook, Twitter, whatever you think may help. Also, if you have experience with fundraising, or any ideas that may help us, please feel free to comment. I am wide open to suggestions!
Thanks for the support, and I promise to keep you guys updated on Project Mobility (figured I should give it a cool name, maybe it’ll stick 😉 )
Sometimes, no, lots of times, with Bipolar Disorder, when you are in the lows, you don’t care about anything. Literally. Your world can crumble around you, and you will barely notice, and not care enough to try to save it if you do.
When you’re in a high place, you’re on top of the world, and no one can tell you otherwise. Everything is sharper, more fun, intense, wonderful, horrible, everything.
In either case, you make decisions, say things, or do things that you probably wouldn’t in your right mind, and when you stabilize a bit, you may regret some of those things. Then again, sometimes, those impulsive decisions and words are exactly what you’ve needed for a long time, and are too repressed when you’re in that ‘normal’ mindset to say or do, simply because you don’t want to rock the boat, or hurt anyone any more than you have already by your emotional instability. You push down the things they say that hurt you when you need understanding, and how they put your actions down as being lazy or crazy until, one day, something that seems so small to them, is epic to you, and it’s the proverbial straw that breaks the camel’s back and you explode. I have made many mistakes in those moments, and the ones that truly matter to me, stick around, and wait it out. I know they love me, and, unfortunately, sometimes, I may be to comfortable in that love, and be a bit rougher on them. Again, thankfully, they love me and know that I am loyal, and fierce, and, just as intense as I can be over something I feel for myself, I am just as fierce, if not more so, in defending those that I love. It’s a trade-off, and, thankfully, over the years, these highs and lows are shorter, albeit no less intense, so are easier on relationships.
I am grateful that I have reached an acceptance of my condition, and a maturity in myself and life to be able to still handle those situations maturely, and with grace and dignity. If you choose to blow off what I say, that is on you. For me, I am a full blooded, hard-headed, obstinate child of my parents, both of families full of stubborn Irish, Native American, and German descent, and when I say something, I mean it. When you push me to that breaking point, you will be surprised how explosive I truly am, and not in a good way. Make excuses for me if you like, I don’t need them. I have never needed an excuse for me or my behavior, It is what it is. I have never needed another person to help me in any way. Yes, if you are there, and it helps, I will lean on you, but if you walk away, do you expect me to fall? No, lots of people have walked away when I could really use them, and it has only made me a stronger person. You and your pitiful words cannot and will not break me. I am almost sorry for you that you are weak enough to think that they would.
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.
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!
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”!)