After two months of fighting one respiratory virus after another Joey is finally doing better. Every time he gets sick we buckle up for another roller coaster ride of uncertainty and sleepless nights. Degenerative neurological disorders bring so much uncertainty. They are the perfect nightmarish combination of definitive and unpredictable. At least that’s our experience.
So after two rather stressful months I’m happy to say Joey is ‘stable’ and is doing OK. I hate GM-1 and everything it has robbed us of, but feel blessed and honored that God chose Sam and I to be his parents. Without ever speaking a word Joey has taught us so much about life and the gift that it is, about unconditional love, true faith and what hurting (really bad) with hope looks like. In all honesty I would trade it all if it meant my son would live a ‘normal’ life, that I would get to watch him grow up, play with his friends and his brother, graduate from kindergarten and college, get his heart broken by a girl and then find true love, get married and have kids… But maybe this isn’t all about me and my pain? Maybe it isn’t even about my son’s suffering? Maybe it’s about something bigger than that?…
Since our last update seizures have become more of an issue and we’ve had to increase the dose of Joey’s medication four times in the last month and a half. Although his body is very weak, he is still able to cough and clear his airway pretty well. He is the strongest and weakest little person I know. People often comment on how strong Sam and I must be having to watch our son suffer and struggle this way. I’d say, without a doubt, that Joey is the strong one. He’s the one who has to go through hell, we are only watching. I’ve probably never ever in my life felt as weak as I do now, yet I have found that trauma and crisis reveal hidden reserves of strength left to tap. It’s when your body aches and your mind is numb (and you feel dumb) from extended sleep deprivation, it’s when you’ve had to make your son gag five times in a row in order to stimulate a cough just so you can suction his airway clean, it’s when you see the discomfort and pain in your toddlers eyes after hours upon hours of endless coughing, choking and gaging and you still in some miraculous way manage to get through yet another day…. That’s what supernatural strength looks like. A taste of “His power made perfect in our weakness.”
joey bear 