Surviving SMA

This article isn't about successful treatment methods or ways to help you child survive.
This is about how you (the parent, grandparent, friend) will survive the experience of SMA.

Having a child with a terminal disease is no picnic at times. It's okay to admit that too. When you're with your child, holding them, making them laugh, things are great, but it's the downtime when you're away from them, it gets hard. For me, each night after Nora went to bed, or each day at work, my mind would begin to take me to that bad place. The bad place is where, you consider what life without your child will be like. How will I possibly have the strength to watch the child I love, take their last breath? Will I spend the rest of my life missing them and trying to remember each detail of our life together? These types of thoughts plague your every moment. They make it impossible to concentrate on anything else. It's all-consuming sorrow and fear - and it will drive you insane.

"I was plagued by this for nearly five years."

My carefully crafted life fell apart piece-by-piece. The career that I spent years building, suffered, and for the first time, losing my job was a real possibility. My health deteriorated as did many of my relationships. However, I threw everything I had into being the best parent I could be. After all, being with my daughter Nora, was the only relief I got from my thoughts and fears. That is how it should be though, your child should be your refuge, the person you turn to when everything around you is coming apart. Looking into those eyes and hearing that laugh, should make everything else move to the background. How you react to the situation is highly dependent of the type if SMA your child has. It's not that the child of the stronger Type II and Type III children have less issues, it's just that their issues are different. Type II children and Type III young adults are not technically considered terminal, although some do pass early for many reasons. However, the burden and worry over long-term care isn't something most type I parents are lucky enough to concern themselves with. Most type I parents only feel confident planning months ahead, instead of years ahead. To each individual though, their situation, or how they perceive it, is their utmost concern.

"love, is watching someone die.“

- death cab for cutie what Sarah said

They always say, "don't take anything for granted" and "live each moment like it's the last" and "don't become complacent" I'm here to tell your that is mostly crap. Sure it sounds great when people say it, and it looks even better on a postcard, but in reality, it's not really possible to live like that. One of the only ways I could survive was to stop constantly reminding myself she was going to die. It's not that I lied to myself and believed she would live to be an adult. It's that I just backed up from the edge a bit. Let me explain. It's like standing on a cliff, behind you is the life you've led up to this point. In front of your is the giant drop off which is the impending loss of your child. I spend years at the very edge of that cliff, starring out into the abyss, always reminding myself it's there, waiting. Being on that edge for me was living and at the same time knowing with a single step it could all end. Standing on that edge is too much to take, or it was for me anyway.

"The sweet smell of her hair was one of the things I knew, one day, I'd eventually no longer be able to remember."

In my case, I used to think that if I prepared myself for losing my daughter, planned for it, that it would make it easier when it actually happened. I would list everything I adore about my daughter and wonder which specific detail I'd miss the most. It was torture, but I thought by exposing myself to it, I could harden myself. The sweet smell of her hair was one of the things I knew, one day, I'd eventually no longer be able to remember. It didn't matter how many videos I made, that unique smell could never be duplicated. The other thing was her eyes. Not the eyes themselves, but the look she gave me - you can look into her eyes and actually see her thinking, see her watching and waiting for me to make her laugh. I couldn't bear the thought of looking into those little eyes without the life I loved so much being behind them.

"I couldn't escape those thoughts for years, they tormented me. Eventually part of who I was, simply ...broke."

To this day, my parents still don't quite get it - I'm not acting like myself, because I'm not myself anymore. That part, that innocence, is changed in me. I'm now something new, something different. SMA does that, better or worse, it will change you.

I owe a lot of my survival this far to my faith... or I should say anti-faith. Being an atheist, has been a gift throughout this journey. Not believing some GOD is doing all this for some sick twisted perverse reason or stupid lesson is comforting. Atheism means I don't have hate or anger in my heart. There's no GOD to blame, nobody did this to me or my daughter, it simply happened without motive or intention. I have heard some pretty ridiculous religions justifications for SMA as people of faith try and find an answer. Some seem to believe there is a type of quota of handicap children GOD must dispense to "special families". These chosen families were selected for their ability to care for a special needs child properly. If that was true, then apparently GOD doesn't trust families that only get healthy children. That also doesn't address the issue of how many special needs children are abused, ignored, or mis-treated by some special "chosen" families. Being selected for this important task, also displays a type of favoritism by GOD, which contradicts the notion that GOD loves is all equally. GOD often just becomes this justification scapegoat. You are taught simply to trust him and not try and understand any of his reasons.

The religious however, do get this wonderful place where their child will be cured and able to walk and run. Heaven, a place where people believe they will see their child again, when they too, walk through those pearly gates. There's of course no need to wonder why the innocent children should have to endure pain and suffering just to have it reversed in heaven. Or that most actually expect their child will perpetually be a child ....for an eternity in heaven - not at all considering the actual child's wishes. I simply believe that, when Nora passes, she will cease to exist, like the infinite amout of time that occurred before she was born. No pain, no regret, she will just be gone. That she, will never even experience her own death, because death is the end of experience. You can experience life up to the moment of your death, but not after.

"I know now though that whenever that final day does come. I won't be ready or prepared."

Nothing I do can fix that so I learned that unless you keep your mind and hands busy, your mind will be free to explore the thoughts of your child's death. So, for me, I took up a hobby. Well, actually 4 hobbies. I made it so that I always had something else to do to keep myself busy. I put lots of effort into building websites and making YouTube videos. I took thousands of pictures so I always had a few to edit. I started building quadcopters (aka drones). Each hobby though in one way or another would benefit Nora. Yes, quadcopters count, since Nora loves watching them go high into the air. I also began practicing something my wife was already very skilled at. I learned to redirect my thoughts or to "think of something else".

Redirecting your thoughts, also known as ignoring the situation, is one you have to be careful with that though. Those thoughts never go away but with practice, you can lock them away. Too often now, I find myself using this trick for things I should actually should think, like when faced with some trivial, yet stressful problem like: "How am I going to get this project completed by the deadline?", I will simply ignore the problem. Often, I can't make my mind hold on to a stressful thought - almost like trying to grab a sliperly bar of soap, they keep popping out of my grasp. This is evident for anybody who reads my goodentree blog. At one time, I could return to those sad thoughts and fears then occasionally write about them. I could actually unlock the door to that area of my brain, spend some time there, then struggle for hours to get that door locked back up safely. Now, it's like I keep forgetting where the key is.

So the advice I learned is:

No regrets
Don't put off doing something amazing with your child. Continually ask yourself if you will regret not _______. If the answer is YES, then make it happen.

Express yourself
There are things you can't tell your child about SMA, until they're old enough - telling them you love them isn't one of those things. Do it often

Don't mis-direct your anger
With SMA, you have nobody to be mad it because it's nobody's fault. So your anger is going to need an outlet - be careful who or what you aim it at.

Don't be a dick
When I get stressed or annoyed, and want loose it, I tell my daughter something I love about her - and the stress goes away.

Prepare for an emergency
Learn to do things yourself, like clearing airways, CPR, suctioning. Always always always have suction and cough machines within reach.

Filter information
form your own opinions, use proper judgement, and don't believe everything you read on Facebook SMA groups.

Form relationships
Find another SMA parent you trust, respect, and can talk to. Chances are, they are looking for the same thing.

Earn your own way
SMA does not entitle you to assistance. Appreciate any help you get. There are benefits to work besides income

and the final advice: Share your experience
Share your child's life, your hardships, your moments. Strive to make people understand your experience - don't expect they will care. You're not entitled to empathy, it's earned, and sometimes you have to give it some help. My goal is to tear into people's emotions, make them feel, make them care about Nora and miss her when she's gone. I've had more success at this by using video and have over 3 million views and counting. Show the world about SMA.