The before and after and in-between


I realized that I haven’t written much in the last few weeks and it really is mostly due to the fact that there isn’t too much going on. We are literally just waiting for Max to get better.  It is like watching the proverbial pot of water boil on the stove. However, waiting shouldn’t imply that he isn’t actively trying to improve – because he really is . There are daily – sometimes multiple – therapy appointments and he is experimenting with mobility and endurance every day, but the truth is there is only so much a person can do on a daily basis to change and grow. And even then, how do you measure it?  Have you ever sat and watched your muscles grow?  It is an impossible feat.

If only there were an SDR video game.  Max plays a game that provide a percentage indicator for your character (your “Main” in geek speak) that shows how alive/dead you are in the game.  If only I could install some sort of meter on Max that would show us how close or far away from function he is, I would be able to rest my weary mind.  He is getting stronger because he can almost hold himself up, but is he stronger than he was yesterday? A week ago? Will he be stronger 5 minutes from now?

Will more PT make him stronger?  I have to think that exercise will make him stronger than sitting on the couch playing another round of the previously mentioned video game.  So, to therapy we go. We have five different therapist/trainers working with him because that it the only way to get therapy in 6-7 times a week.  That means we have five different people who could venture to give a professional opinion about whether he is doing well.  Most, not all, of them are content with saying, “He’s doing great,” and while I appreciate that sentiment, I really need something more specific. And, as most parents of children with disabilities can attest to, any time your child is merely existing, someone is willing to proclaim that they are “doing great!”

One of the therapist last week gave us a few extra minute at the end of the session and we were able to express some frustration about not knowing what the future will bring.  She watched some videos of Max before the surgery and then she actually said, “I think you did the right thing having the surgery.” No one has very said that before, and while I am not 100 % convinced for more than 100 reasons, she gave Max some peace of mind.  He cried tears of gratitude and thanked her for saying that. He needs reassurance that his efforts are paying off as much as we do.

He will know better than we will when he feels like he has achieved some measure of success. He should feel something changing in his body.  I will only know that we have achieved some success when I don’t wake up in the morning and the very first thing I think about are his legs.  If Hun and I can take a dog walk in the evening and talk about something other than the worry we feel about his ability to walk again, then, and only then, we will have won a round of this game.

 

Tags:

One Response so far.

  1. Susanne Merves says:

    Once again, I am reminded of how fortunate Max is to have you as parents. He will succeed because of your ability to inspire and cheer him on. He is an incredible young man who has shown strength, determination and resiliency despite the odds.

Leave a Reply

Your email address will not be published.