Duchenne… What It Really Is!

Source: Duchenne… What It Really Is!

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Hurt

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.

To the kids that don’t think my son is good enough

I’m sure you didn’t mean anything mean by it. I’m sure you were just bored, and decided to go home, where you can run and act like kids. I get that, I do, BUT, when you leave a child sitting in his yard, without saying a word to him, simply because he is different, and maybe can’t keep up with you, and tries to get you to do things that he CAN do, it makes me angry.

Anger is a secondhand emotion. I get angry because you hurt my baby, and that hurts me. See, I know why I feel the way I feel, so it’s all good, I’m still sane, and in control. Now, when you have done this repeatedly, and I have run out of excuses that will take the hurt out of my baby’s eyes, you’ve gone beyond making me angry. You’ve pissed me off, and you really don’t want that. You see, I don’t raise  my children to treat others poorly. Sure, they do things sometimes, and I talk to them, ask them how they’d like it if the roles were reversed, and try to help them figure out how to fix their gaffe. That’s learning, and growing. I also teach them to defend each other, and themselves, and while people say sticks and stones, my children know that isn’t true.

Words and actions hurt far worse, with longer lasting effects, than a punch or kick ever will. You see, with every look you’ve given my son, every time you’ve ignored him, or told him an idea of his is stupid, or that something he has is not cool, or whatever, you have told him that he is LESS. He is less human, less worthy, less fun, less normal, just LESS. For a child who already has so many issues with socializing, and trying to be normal, when his brain and body weren’t made to fit into the box that society has deemed acceptable, these messages slowly break down his every sense of dignity and esteem that he feels. No matter how hard I try to lift him up, praise him, tell him how amazing he is, I am his mom, and we all know that moms all think their kids are amazing, and awesome, right?

He wants, no needs, the verification that he’s good enough from other kids, so for you to treat him like less than a dog, no matter how unintentionally you may have done it, it’s not okay. How would you feel if the roles were reversed? How much would you like having a body that struggles to do the most basic things, like walking, or running, or standing back up, not to mention all the other issues muscular dystrophy has blessed him with? How would you like having a brain that makes the things others say may no sense to you? For everyone’s words to jumble together, so that you can’t make sense of what is being said? How would you like being left behind when your brain and your body simply can’t keep up? How would you like it if the child being left behind were your baby in a few years? Not so much, right?

I’m sorry, I would love to give you another chance, but, you see, as I’ve explained, my son wears his heart on the outside, and you’ve already hurt it too many times for me to trust you with him again, so this is the end of the line for you. Sure, it sucks, but I won’t let the fact that there aren’t many kids in our neighborhood force me to allow you to hurt my children. I would much rather they keep the friends that they have, that treat them with respect and dignity, and see past the differences, than to allow one more tear to fall because of ignorance.

My hero, and his biggest defender

My hero, and his biggest defender

Sorry, I had to vent it this way, or else I might go confront some ignorant adults down the street, and figured there were plenty of people who have dealt with this themselves.

About that “Mom” who wishes she’d terminated her 47 year old son

Please click to read article, or this entire post may not make any sense to you 🙂

Mother wishes she’d aborted 47 year old Downs son


This makes me unbelievably sad.
It’s not easy caring for a special needs child, and I know that some women can’t face the idea of it, and make the choice to terminate. I don’t understand it, but I know it happens. I don’t speak out on abortion, usually, because I completely disagree with it for myself, but, again, I know it is the parents’ (not just the woman’s) choice and choose not to enter into the semantics of it.

I think every child should be given the opportunity to live, whether it be for moments, or years. We all have a purpose.

Will each of us touch millions of lives, or go on to make some huge global impact, so our names go down in the books for generations? No, absolutely not, but we can touch a few lives, make a few ripples, change someone’s life in some way.

I have known and cared for many people with Downs, and while I am not blind to their physical or mental limitations, I am also not blind to the gifts they have to offer. One has gotten on every last one of my nerves, and pushed every single button I didn’t know I had, then turned around and said he wished he were “normal” like me. Do you know how humbling that is?! I am so far off that “normal” path that the jungle that is my mind obliterates it, but like a child, trying to get their parent’s attention, he pushed until he had it, then completely skewered me with insight. Yes, my life may be difficult, and my mind may take some twisted paths, but I look like everyone else, and can talk to people, and not be spoken to like an idiot (oh, that pisses me off!) I can act like a complete goof, and it’s funny, where he would be deemed “retarded” and frowned at for listening to his music, singing off-key, and dancing in public.

Why? If he feels like singing his joy, and dancing it out, why must he be looked at like a fool? Who are we to say who deserves to live and who doesn’t, simply because they are “different” from the norm?

Why must we continue to shove people in boxes, so they can be accepted by the general public? Why does the general public matter so much? Who are they to me? Do they pay my bills, cook my meals, or share my life? How many of history’s greatest minds would never have been born, had the option to know and abort their babies been given, just because they weren’t going to be the child they expected?

Do I wish that my son were “normal”? Part of me, yes. I love his quirkiness, and his sensitivity, and focus, but it’s not the Autism I would change. I would obliterate the Duchenne, for him and every other person living with it. I would bring about an Egyptian plague kind of obliteration, if I could, to get rid of it, and ever other debilitating disease on this planet. I would give and do anything if my baby boy could run and play with his friends, if he never had to wear the splints to sleep again. I would go to the ends of the earth, chasing some fantasy fountain of perfection to know that he would never face the issues that this disease is storing up for him, but I would never, and I mean NEVER have chosen to abort him. My life, my son, may not be what I expected, and I may be stretched to the limits, and may have left regular stress so far in the dust that there’s not even a word for the level I face every day, but I cannot imagine my life without him. It would be…. less. Simply less.

While I understand what she is saying, the stress involved, the choice she would choose to make today is far different from choosing it when she was pregnant. Saying, now, 47 years later, that she would abort him in a second, is like saying she wishes it were legal to kill him now, because he makes her life too difficult. That is not something a mother would say. Those are the words of a very selfish woman. I am truly sorry that her son, who appears to have spent the majority of his life in one institution or another, has caused her so much distress, but to paint herself as a martyr, when there are so many mothers struggling to balance the needs of their entire family, including their special ones, is like spitting on those who don’t have the option, or choose not to place their child in an institution. Had she been on the front lines, with her son in her home, every day of his 47 years, I could see her attitude, but she has fobbed him off on institutions since he was a toddler, and became too much for her to bear. She has had moments, weekends, of the behaviors that are typical of those with Downs, and does not seem to understand that many of these behaviors are because he is overwhelmed, and doesn’t feel like he has any control. She gets him, decides “We’re off to do these merry things.” and is shocked when he wants his routine, and acts out in the only way he knows how! Had she been there, she would know these things, and would have the necessary skills to cope when he does this. Instead, she gets embarrassed, and wishes, publicly, he had never been born.

Just because he can’t read or talk, and is deemed mentally deficient by doctors who can’t possibly know for sure, if he can’t communicate in their language, does not mean he doesn’t hear, or intuit what she feels. He has probably known all of his life how much she dislikes him, and what kind of life is that for anyone?

I am sorry if my opinion offends anyone, but I grew up seeing mothers sacrifice the lives they wanted to care for their children, and I have seen them stressed and frustrated, but I have never seen one say they wished that child had never been born. I cannot fathom the selfishness, or the hardness of her heart, that she could say that about the child she carried inside herself, that she cared for, however short that time was, and that loves her with an innocence and intensity that is unrivaled by all but the youngest of children.


I know my opinion won’t change anything, and there will still be a lot of women who will choose to terminate their pregnancies, simply because they are afraid of the future with a special child, but I hope more women in that predicament will look to other parents who are in the fight, raising these children, and get their side of it. There are tons of support groups, and pages on Facebook. A simple Google search can open many doors to hear both sides of the story. It won’t always be sunshine and lollipops, but neither is parenting a neuro-typical child. They both come with challenges, and if we knew that our “normal” children were going to be drug addicts, or murderers, or whatever other negative things you can think of, would we start selectively terminating those pregnancies, as well?

Do we want a diverse planet, full of different minds, thoughts, views, opinions, or do we want a world full of “normal” and perfect, a pandemic of monotonous drones, all happy to dress/act/look/think alike?

Where would that line of acceptable choice be?

Chasing Sunrise

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.

Seeing the beauty

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.

Random musings about depression

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.

Please excuse this shameless plug

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 😉 )

You don’t know me. At all.

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.