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.

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 😉 )

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! ❤