Well, that was thirteen and a half years ago and the words and memories are etched in every cell of my body. Adam is OK. OK does not mean verbal; OK does not mean he can move his arms or legs with intention. OK does not mean he has a straight spine, a body free from multiple contractures. OK does not mean he can chew or control any of his bodily functions. OK does not mean that his basal ganglia magically healed. He's OK...most of the time. He can smile and he is is happy, most of the time; above all, he lives. The "really happy" part is something which I cannot attribute to many people I know. The tragedy is not that this "thing" happened; the tragedy is that most people could give a rat's ass about him and how he's doing.
How are mom and dad doing? Well, most people don't give a rat's ass either. We're OK, except for a phenomenon called catastrophic thinking coupled with undifferentiated anxiety!
Catastrophic thinking can be defined as ruminating about irrational worst-case outcomes. Needless to say, it can increase anxiety and prevent people from taking action in a situation where action is required. This can be especially true in a crisis situation.
Need some real life examples? Adam hasn't peed in 12 hours, hence do we need to take him to the hospital because his urethra needs a roto-router job or his bladder will explode? Adam misses a bowel movement, does he need to go to the hospital because it must be a bowel obstruction due to a collapsing pelvic structure? Adam is hyperventilating, so does he need a hospital stay because he must have aspirated some pureed food....damn, we removed the g-tube after three years of feeding him high fructose corn syrup. Adam can't sit in the wheelchair for more than two hours, let's get a consult because his hip must be subluxed. Adam has a temp, is it a lethal form of pneumonia? Irregular breathing, must be a death rattle? Falling asleep during waking hours, must be over medication? Ten thousand scenarios, ten thousand occurrences of catastrophic thinking, ten thousand imaginary trips to ICU'S, ten thousand deaths.
People think that you can cure away, therapy away, medicate away catastrophic thinking and the resultant pervasive anxiety...not in this lifetime. Every deviation from that which is routine, from that which is normal, causes undifferentiated anxiety and catastrophic thinking. Not that you haven't dealt with stuff, but simply because there are wounds that never heal...they do not heal ever, the kind of the chronic sorrow stuff that textbooks are written about.
You live on the threshold of death every fucking day. Not that's it imminent, not that you are afraid of it for yourself, but that you cannot bear the thought that your kid will be alone if it happens, either to you or to him. I cannot bear the thought that he would be alone...like he was when he nearly died almost 14 years ago. The root of catastrophic thinking...he would be alone and that I were alive, he would be alone somewhere in energetic outer space. It's hard to deal with that shit!
This is actually psycho-bable for catastrophic thinking. I would imagine these demons lurk in the souls of every parent of a severely compromised child. There ain't no healing, there ain't no dealing, there ain't no option to flee or to fight. It's just there and will be forever.
You live for today, you believe that you will see tomorrow. You give all to today because you fear, in your deep, dark place, that there may be no tomorrow. Being alone frankly shits....but I would not trade my life nor my experience for any one's.
PS. Thanks wiki, for the few lines I borrowed, which are obvious to the reader.