The Bridge

If you know me at all, you know that I draw inspiration from everything. I read a lot, listen to different types of music (contrary to popular belief it is not just country), I love dialogue from movies and television, I have more than 2 thousand quotes pinned on Pinterest; anything can be inspiration for me to create. Oftentimes I get an idea that won't let me be until I do something with it and this latest video is a good example of that.

I heard the song "Help You Stand" by Anthem Lights a few weeks ago and instantly knew that I needed to do a video of SMA kiddos using the song. It was a quick turnaround time to making the video although it has been sitting in Youtube purgatory for a few weeks now waiting for the perfect time to be released into the world. Most of the videos I make as part of B4SMA Productions have simple descriptions. This video does too; dedicated to newly diagnosed families. Know that you are never alone and that there is always someone who will "Help You Stand". Simple right? Except that there is really more than that to this video and while I usually keep this kind of reasoning to myself, this time my brain won't let me.

I've been an active member of the SMA community since I was twelve. That is a lot years, a lot friendships made, and a lot of lives lost. Over the years I have changed my position on a lot of the "controversial" topics of SMA care. I have gained perspective and understanding that the twelve year old version of myself could not begin to comprehend. Being a part of the community for so long has been a blessing and a curse. You would think it would get easier because the questions and choices haven't changed much in the fourteen years. Parents still question their decisions, still think that they are alone in the fight, ask me what I would do. I pretty much still have the same answers to the questions but I think over the years I have been able to find a way to be supportive of every choice because I am not a parent. Whatever decision someone else makes is okay because I know that they are the only ones who have to live with that choice (thank you Shelle for reminding me of that regularly because I tend to forget). That fact doesn't make deciding what is "right or wrong" for the individual and family any easier. I have sincerely thought about this a lot in the last few weeks because I have been entrusted as a good person to talk to for a bunch of newly diagnosed families. This is a difficult position to be in because I know that every situation is different and as much as I may want to I can't make the process of navigating SMA any easier. I have experience with a lot of aspects of SMA and if I don't I usually know someone who does but no one can make decisions for another family so the best I can do is say "this is what worked for me" and leave it at that. Lately I have had this analogy floating around in my head and I feel like I need to get it down in writing so bear with me here as it makes sense in my head but no guarantees on paper.

When you receive the diagnosis of SMA, it is kind of like coming to a bridge that spans a huge canyon. You can't even see more than a few of the slats on the bridge because it is so foggy and dark. From what you can see the bridge doesn't look very sturdy or safe and it seems deserted. You have three choices for getting across and none come with a map or GPS. Your first choice is to take a few very tentative steps forward. You look forward and the path is dark and scary so you decide to sit down and hope that the sun will burn through some of the fog. You look down and it is all darkness. You're pretty sure thousands have gone before you, never to be heard from again, and rather than risk disappearing into the void, you pitch a tent and curse the fact you didn't pick the Disney World vacation instead of this "choose your own adventure" kind of thing. You know giving up is a perfectly acceptable option because you're only going to give yourself a few days to digest what is going on and then you will continue. You're afraid to look up when you do start walking again but you sense that you are not alone. There are others taking the bridge the same way you are and you're so thankful that you're not alone. You can do this, with the others. You have two other ways to get across this bridge too. The second one is even scarier because after you have taken a few steps you feel someone behind you. They weren't there a few minutes ago and now they are pushing you across. "Wait!" you shout because the slat in front of you is broken and you're pretty sure that you are going fall through but they keep pushing and somehow neither of you fall. You know that people behind you have crossed the bridge before and some of the ones in front of you are pulling because they know it's better if you run across the bridge. They are experts and some of them have done this journey for more years than you have been alive; surely they will get you across safely. You continually look behind you unsure if you would have been able to cross that last part if it weren't for the people tugging and shoving you across. You are getting across anyway but unlike the first way of crossing you have little time to understand or enjoy the scenery because of the sense of urgency. You get across but at the end you realize that you don't really know how you got across and there is another bridge up ahead. You realize that you got across with help and this second bridge doesn't have guides so you are going to have to figure out the way across all over again and you have to do it by yourself. The guides from the previous trek are in the background and you know if you scream loud enough someone will come but you don't know how long help will take to come. You begin the journey across the second bridge and remember to pay attention on how to get across with minimal assistance because you have no other options. You also remember to enjoy the scenery because you will never cross the exact same bridge again. The third and final option is just as scary as the other two. Again the bridge seems deserted and unstable. You begin walking and, looking over the edge, get terrified. It's so dark and you can't imagine how anyone got across. You walk slowly and stop sometimes looking behind you to see if you are still alone. Maybe you should turn around and go back? This doesn't feel right. Then you feel something brush your hand. Turning you see a smiling face. They are holding out a hand and offer to walk with you. You're thinking that it isn't always a good idea to talk to strangers but you're scared and the person says that they have walked this way once before, it's easier with a friend. So you walk together. Sometimes you feel the need to sit down and rest. Sometimes your friend sits with you and points out the beauty surrounding you, noticing things you would have missed walking by yourself because you kept looking down. Other times when you sit, your friend keeps walking and you occasionally lose sight of them for awhile. There are parts of the bridge that you have to walk alone and it is scary because you think you're never going to find your way out. But somehow you find the way and when you trip, your friend appears in front of you, offering a hand or an encouraging word. You make it across in your own time and own way.
Yeah it's convoluted but it's how I feel. When I was younger I was solidly in the  second option, pushing people across the bridge because it was the only way I knew to get there. Now I am hoping that I am more of a number three. I am honored to walk with others and point out the beauty but I also have to walk away sometimes and let you stand up by yourself. I have my own bridges to cross so I can't be your everything because I have to let you find the right path for you. Maybe our paths will cross again and maybe not but please know that I am reaching out a hand to Help You Stand whenever you need it.
So if that still doesn't make any sense try reading the lyrics below and definitely watch the video.

Help You Stand | SMA Awareness

Lyrics to
"Help You Stand"by Anthem Lights

Picked up the phone again
Put it right back down
That was such a lame attempt
To try to help you out
If I said to myself I'm not scared I'd be lying
Don't know if I know what to say
But I'm trying
So I picking up the phone again

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger
But I'm reaching out my hand
I just want to help you stand
Oh oh oh
Just want to help you stand
Oh oh oh oh

The tone that's in your voice
I can recognize
The shaking from your choice
I can empathize
I'd said I had never been there I'd be lying
Jesus picked me up when I was crying
Broken down on the ground
That's why I'm calling you now

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger
But I'm reaching out my hand
I just want to help you stand
Oh oh oh oh
Just want to help you stand
Oh oh oh oh

He'll meet you where you are
He loves you where you are
He's not pointing a finger
He's just reaching out his hand
Oh oh oh oh

He'll meet you where you are
He loves you where you are
He's not pointing a finger
He's just reaching out his hand
He just wants to help you stand

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger

 

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger

 But I'm reaching out my hand
I just want to help you stand
I just want to help you stand

 

 

Spinal Muscular Atrophy Blog Party

Since I am new to blogging, I'm not entirely sure what a "blog party" is all about but I like parties, especially when a lot of my friends are attending, so I'll try it.
According to the rules of this party, I'm supposed to tell you about Spinal Muscular Atrophy (SMA). I can do that!! If you want a lot of facts and information on SMA, check out THIS PAGE that I put on almost all the websites I design (more on that in a bit). What I like to tell children when they ask "what is wrong with you?" or "Mommy, what happened to her?" (for the record, this does NOT offend me but I think I could save that for an entire post) is below.
"You have just heard about SMA and are now wondering what that is. SMA is a short way of saying a really long word. SMA stands for Spinal Muscular Atrophy, which is why everyone just says SMA. SMA is like an illness that you can’t catch, so don’t worry. People are born with SMA. Kids with SMA are just like everyone else, they just do things differently. Kids with SMA use wheelchairs to move. Kids with SMA don’t have a lot of muscles. Think about how big your muscles are right now and now imagine what it would be like if you didn’t have any. When you are a baby, you have tiny muscles that don’t work well but they grow bigger as you get older. In kids with SMA their muscles don’t grow. They have little muscles because their muscles didn’t get the message from the brain to grow. Thankfully, the brain isn’t a muscle so kids with SMA are smart and love to talk and laugh and sometimes even tell jokes. Everything you do involves muscles like how you eat, how you move, and even how you talk. Any movement is hard when you have no muscles, so doctors are trying to find a way to make the muscles grow bigger. You can help by raising money to help the doctors find a medicine to help the muscles grow bigger and stronger so that kids with SMA can be just like you."

I was diagnosed with SMA type at 6 months of age. No one in my family had ever heard of it until I came along. My little sister, Emma, also had SMA but flew to heaven when she was 3 years old. I'm not going to bore enlighten you with the details of my life; I'm saving it for the Lifetime miniseries about my life. ;) But I DO want to tell you about this amazing little community that I am so honored to be a part of.

I didn't necessarily want to be a member in this not-so exclusive club but here I sit, currently in my favorite place on earth, my Grandma's home - in "my" room, with a cool breeze blowing in on me. The SMA community is a club and a family with members from all parts of the earth. It houses members from every class, religious belief, gender, political view, and race. I'm proud to be a member of this club...I get to be a part of so many amazing people's lives.
By the time I was in my mid teens, I wanted to be more than just a passive member of this club. I wanted to do something, give back, help people and that is exactly what I did. With help from Brenda (see previous post if, by some odd black hole/time warp thing, you have no idea who she is), her family, my family, and friends, we started B4SMA. B4SMA is an organization that sends blankets to children, up to age 21, with SMA from around the world. In a little over 5 years we have sent over 800 blankets to countries ranging from Canada to Japan, South Africa to Iceland, Solvenia to Brazil, and of course many other countries including the United States. It is a very rewarding venture and we will continue to do it until a cure is found.
Unfortunately I was still yearning to do more...but what? I mean, as a high school junior, I didn't have money, I didn't have connections, I didn't have a career. But I did have a computer and creativity yearning to be let loose on the world. My dear friend, Laura, ran an organization called Our SMA Angels that provided web space to families dealing with SMA. The web space was free and unlimited. Laura created Our SMA Angels in honor and memory of her sons, Devon & Sidney. I wanted to help her continue this amazing work and, after a bit of pushing (the tenacity for which most certainly came from my mother), she allowed to me be a part of her previously one-woman team. Since then, I have become the head designer on new websites and also help with upkeep of older ones. None of that would be possible without Brenda and my (sorry, falling back to my middle school days) BFF, Kim J. Kim helps update older websites and walked me through my earliest frustrations with FrontPage. She, too, has earned a post all about her, eventually. My creativity comes naturally from my extraordinarily artistic father, who is the visual manager at a place that could easily be described as a child's wonderland. He is fantastic at his job and, although we are creatively very different from each other, always praises me on my work. He's my dad, he has to. I'm not entirely sure how many sites I have designed/updated/maintain but I think it is close to 90.
For me, however, enough is never quite enough when it comes to helping others. My creative energy wanted more and more! I couldn't really find a suitable outlet for the wants and desires...Enter Shelle, mom to Logan. I can't begin to describe what Logan means to me in this already too long post, so you will have to wait. Anyway, Shelle said that they were needing T-shirts for a fundraiser and wanted to know if I could do that. Umm, sure? I mean I could try. It was so much fun that I created a store at CaféPress and recently expanded to Zazzle.
My latest, although I've been doing it for a little over 3 years now, venture is making videos. It is my latest and greatest passion...for now. I make videos for SMA families mostly but I have made a few about myself and my family.
For now this fills up my time but I'm certain that in time I will want to do more. Perhaps a book or something...Who knows what lies in my future but I am certain of one thing, I will be a member of this community until the community is no more.

Want to know more about SMA?? Watch this!