“So I turned myself to face me
But I’ve never caught a glimpse
Of how the others must see the faker
I’m much too fast to take that test” — Changes, David Bowie


Shade at Christmas. The glove helps straighten out his hand so it’s not in a fist all day. 

It’s been seven months since my last post and almost nine months since Shade’s big stroke at the end of last May. Before that, Shade was relearning to walk after five years of recovering from his first stroke and he was doing well. He could do over 100 walking steps by himself. He could get himself anywhere he needed with his hands, whether scooting across the floor or pushing his wheelchair. He could lift himself to the counter and stand to brush his teeth or put dishes away.

Here’s recap of what that stroke in May did to Shade: It stole all he’d accomplished from him.

I’d just like to point out that I said that last line without using the foulest of profanity or cursing every diety that was ever conceived by man, which is how I normally express the situation. So that’s a step in the right direction, right?

Shade still has paralysis on his left side. Not total paralysis. He has limited mobility in his arm, though it’s tough to control. He can’t fully extend it or straighten it over his head without help from someone. Sometimes he will try with all his might to open his hand, but it will stay squeezed in a fist. Other times he want’s to grab something and his hand won’t close. His brain works against his will. He can’t hold anything heavier than an empty water bottle, which has really put a dent in his Shake Weight workouts. He can’t move his wheelchair wheel on the left side. But sometimes he can grip small things. Sometimes he can reach out a little. That means it’s working some. It’s just at 3% of optimum ability.

He gets occupational, physical and speech therapy weekly, though they work more on helping him adapt to his situation instead of trying to overcome the limitations. Our friend Danny, however, comes over weekly and works him hard to expand his abilities. Danny makes it real, as if Shade were training for a sports team. He cuts Shade no slack.  He even smack talks with Shade, which Shade loves. Danny is the ultimate blessing because he foresees progress where others don’t. Everyone else says, “Who knows? Maybe; maybe not.” Truthfully, no one else has the balls to say there may be progress because of the litigious nature of our society. Doctors aren’t going to put themselves at risk for malpractice by giving a patient hope. Because hope is unknown. It’s fleeting. Understandable. If I was a doctor, I’d probably do the same.

The last stroke certainly did him no favors socially. Now he can’t even roll around to socialize amongst the students at his school, Central Florida Prep. He’s reliant on others to get him from place to place. He’s got buddies there that will roll him to and from class, and they all treat Shade kindly and hang with after school until I pick him up. And the teachers are lovely and protective of Shade and bend over backward to help us. Recently Shade even became Vice President of the school’s anime club, which is fantastic for him because it means he’s valued.

But once home, he’s pretty much alone, except for us family. Occasionally on weekends he hangs with his camping buddies, but it’s usually because I’m going to their house, too. He doesn’t have sleepovers like before. Plus, the friends his age are now all driving and going out on dates and having dual enrollment. They’re getting accepted to colleges, and holding down part-time jobs and prepping for their next big move in life. They’re busy. Picking up Shade to go out is maybe a hassle … because of the wheelchair, I’m guessing. Or awkwardness in social situations, perhaps. Or … I don’t know. I’m making assumptions on observations. Could be anything.

Get this. Because of his paralyzed left side, Shade’s one real social outlet that he had left, online video gaming, was stolen from him by that fucking stroke. Curse the gods! (Sorry, I couldn’t hold it anymore. But I’m good now. It’s like a steam whistle. You gotta let it blow occasionally to let off pressure.)

Shade does have one friend who has amazed us. His name is Nick. He lives in our neighborhood and he visits on a regular basis. Not because we ask him. Not because he feels a need to do a good deed. He just shows up to hang with Shade, one on one, because he has fun with Shade. They talk Pokemon and anime and video games. He walks Shade up to Walmart and Game Stop to shop. He has no problem just sitting on the couch with Shade for hours, sometimes not even talking. He even crashes on our couch sometimes after school, which is foolish because Shade will find anything in the cupboard and put it on Nick’s reclining body, so when he wakes up, he’s covered in bananas or Legos or anything handy and uncomfortable. Nick is another great blessing. He doesn’t even know how much we appreciate him because, for one, he doesn’t read this blog, and two, we don’t want to turn it into a weird thing. You know, “Thanks for hanging with our stroke victim. Are you doing it for community service or did your church put you up to this?” No, he’s just a kid that likes Shade for Shade’s sake. But eventually Nick will go off to college. I’m not looking forward to that day, though it will be a great day for Nick.

And I’m not saying others don’t like Shade for Shade’s sake. They do. Others just don’t hang out with him like Nick. Others don’t call Shade out of the blue on a weekday and say, “Let’s chill for an hour.” And for every kid like Shade, there are millions of others in the exact same situation. A disabled life is challenging physically, but it’s not even close to the challenge for that person’s spirit. To suddenly be seen lesser not just in abilities, but in social worth. That’s crushing.

Don’t believe me? How many close disabled friends do you have? I’m guilty. Sure I have disabled friends. I’ve been inspired by those same people. I’ve even written articles about amazing people that I consider friends. But did I really take the effort to develop that relationship? Did I call them out of the blue for coffee or to play a game of backgammon or just to chill on the couch? Did I make the effort to be a true friend for friend’s sake. No. I point the finger at myself, a hypocrite of the highest order. Because when I see my son’s distress and loneliness, I can only think, “How can I expect others to step up to real friendship with my son when I haven’t even done it myself for others?”

Time to make a change.





1 Comment (+add yours?)

  1. Amy
    Feb 20, 2017 @ 22:04:30

    Brave, honest, raw, truthful. Thank you for letting us in to Shade’s reality, and yours. It helps me imagine what it might be like to be in your shoes- and yet I’m also faced with the reality that I might not face life with half as much courage as your family, and Shade. It chills me to the bone because I remember when our sons were the same- fun and curious little boys, playing together. Why not mine? Why did your son have to suffer? What would I have done? What can I do? Why can’t I fix this? Why is this life full of such suffering and inequalities? How can we help…but we haven’t been there to do much of anything and I’m so sorry about that – and I know the loss is ours because of the incredible people you guys are..all of you!
    Yes you guys have admirably continued to press forward, but I’m sure you would all much rather not have to walk down that road in the first place.

    Are there other disabled kids that might benefit from knowing Shade?

    Thank you for sharing the lonely honesty of Shade’s life. I will not look away. I will take it in, I will pray and ask what we can do, and what we can’t…and we keep you in our hearts.

    Onward, and upward. Good days and bad. Blessings and triumphs and setbacks. May the Force be with you.


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