People are nice. If I’ve learned anything since this horrible thing happened to my son and to our family, it’s just how nice people really are. In the nearly one month we’ve been camped out at the hospital, nice people have fed us, hugged us, comforted us, prayed for us, helped get our other kids to and from school each day, helped me keep up with my work and have sent us incredibly uplifting messages of care and hope. I already knew that people were nice, but this situation has really enlightened me at entirely new level as to just how wonderful peoplecan be. It’s been a blessing, and one I will never forget.
Because people are so kind and thoughtful, they frequently ask me how H is doing. I appreciate this a lot and I love that folks care so much. And I want to answer their questions about H’s condition, but I am honestly not sure what to say, because it’s really complicated. The truth is that he’s alive, and that’s a miracle. How he survived his injuries is beyond me. The more I research anoxic brain trauma, the more miraculous his survival seems. But the truth is also that he has suffered very substantial brain damage, and I never know quite how to put that so that I don’t sound like Debbie Downer every time some nice person inquires as to his well being. I think that people want to hear that he’s “really making great progress” or that he’s “turned the corner.” They don’t want to hear that he isn’t even close to walking or that he can’t really feed himself without a lot of assistance or that he is mentally incapacitated to a degree that denies him the pleasure of even reading a book or having a real conversation.
In an age when modern medicine means that most of us “get well” and “recover” from even the most serious injuries and illnesses, it seems like it’s hard for people to get their head around the idea that H may never really recover from what has happened to him. He will certainly improve to some extent, but the odds that he will live the rest of his life without some meaningful disability are pretty low. Although I sometimes do attempt to convey how grim his prognosis looks at the moment, most people respond by telling me about a relative or friend’s miracle recovery from a stroke or auto accident. They tell me I must not stop praying and hoping for my own miracle. I don’t know how to explain the fact that while I will always, ALWAYS keep hoping and working for H’s full recovery, I also need to begin accepting the reality of what has happened, and what that reality means for my child and our family. I feel like I will never be able to fully grieve if no one accepts this reality for what it is. If everyone keeps expecting some sort of miracle that his doctors and all available evidence seem to find unlikely, I don’t know how all of us who love him can come to terms with what is. (I don’t know if I’ve explained any of this very well. It’s complicated to balance hope and grief, optimism and acceptance.)
As far as grief goes, I am experiencing it in waves. Some days are better than others. This week is hard because all of his friends and classmates around town are celebrating their high school graduation. H should be walking across a stage tomorrow afternoon, wearing a robe and a goofy grin, accepting his diploma alongside the kids with whom he’s been friends since preschool. We should be throwing him a party. I should be weeping because my oldest baby is growing up and moving on to the next phase of his life, not because he can’t walk or speak.
I also keep thinking about the ways in which we talk to kids about the dangers of drugs. In all of the sermonizing and warning that I did with H and continue to do with his younger siblings, I don’t think it ever occurred to me to warn them that if they abused drugs, they could end up seriously brain damaged and in a wheelchair. I warned of addiction, legal consequences, drunk driving, loss of opportunities and even of death. But I never thought to warn them of this. This possibility, this outcome never occurred to me. Now I want to scream about it from the rooftops, and beg other parents not to repeat the mistakes I made as H became more involved with drugs between the ages of about 15-17, a time during which I floundered around trying to figure out what to do instead of doing SOMETHING, ANYTHING to prevent what has happened. I will never be free of the guilt I feel due to my failure to adequately and forcefully address H’s drug use before it was too late. I really hope that by sharing our family’s story fairly openly, it will encourage at least one parent to act more decisively and proactively to step in at the beginning of their own child’s drug experimentation.
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