Late this afternoon, we headed over to St. Mary’s Hospital for Daniel’s neurologist follow-up appointment. The nurse who took his vitals did a double-take when she saw him because he looked so much better from the last time she saw him. He eats us out of house and home, but managed to lose a little over 2 pounds since last month! The appointment went well overall, with us explaining we have seen strides in his health. I still haven’t thrown caution to the wind, but I’m ready to do the happy dance!
As we got further into our discussion about his health, the reality remains that he is still tired, still has to have a minimum of 10-12 hours of sleep every night and some days are just bad days no matter what we do. Her comment was, ” You know, this may be as good as it gets until he outgrows this syndrome.” And I am perfectly okay with that.
Our society always pushes us to do better, be better, achieve more, do more and God tells us to rest. Jesus didn’t push himself to overachieve or make a tally of how many He healed in a crowd. He simply did what his Father told Him to do and then retreated to be with His Daddy.
Considering how far we have come in this medical journey, I will gladly take and keep my son at the stage he is right now. No, he’s not completely well, but he’s able to function most of the time. His stubborn streak is showing up, his wicked sense of humor is slipping back into conversations and his obsessive tendencies over wanting others to understand his opinion are all part of his daily life again. Little things like this that I prayed would come back are here and driving us all crazy again; and I wouldn’t trade it for the world on a silver platter. If this is as good as it gets, then I’d say I’m a very blessed mom. I’ll take every moment of this versus the other side of this rare illness.
The struggle isn’t over yet, but I can honestly say I think we’re finally on the other side of the worst side of it. No, this isn’t how we planned on high school being for him, and next week will be a realistic indicator of his endurance. Dipping into the muddy waters of “why me” or “what did we ever do to deserve this” would simply be a stupid negative move. Instead, we choose to focus on how far he’s come, God’s glorious healing power, and relishing every returning part of his personality that was ambushed by this syndrome. If this really is as good as it gets, then we are blessed beyond measure.