A question with no good answer
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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Well put, Kate. I also get asked and don’t know what to say. I do continue to pray pray pray for a miracle, but I’m also trying to accept what today’s reality is. Now, when I’m asked, I’ll refer them to your post, although many are following his tragedy here already. I say “his” tragedy. It is our tragedy too – yours and Chris’s especially. Continue telling his story and be sure it will save some other young person or young people from the same horror.
Katie, I have printed out several of your entries regarding what has happened with H and your family. I have given these print outs to several parents of teens that I know. If it stops one of their kids from ending up like H, you’ve done good.
It can be very painful when we come up against the need to find the positive and discomfort we have with the intractable. People want to feel like they’re helping and often don’t understand (at an emotional level, even if they do intellectually) that sometimes people in pain and facing difficult issues just need company in that pain. When you’re going through immense stress and facing bleak outcomes, you are absolutely incapable of being cheered up — you just need some company getting through and adjusting to the new normal and new expectations. Eventually joy will come, even if H is severely incapacitated — it’s clear from your posts that there’s enough of his spirit there that you and he will go forward in this new, different future. Not a future anyone would ever choose — but adjusting and moving forward cannot become contingent on ‘recovery.’
It’s very different, but I remember vividly a conversation I had once at a very difficult time. It was coffee hour after church and I was sitting quietly off to the side. Someone came up and asked how things were going. For a second I thought about feigning a smile and just saying, “fine.” But then I thought, maybe it would really help to talk about this a bit and she does seem concerned and I do like her, so I let loose with, “Well, my husband has a tumor on his kidney that’s almost certainly cancerous, and he’s so nervous that he’s refusing to get the surgery he needs, and I don’t know how to convince him and it’s horribly, horribly difficult.” She smiled vaguely and sympathetically, offered some “oh dear, that’s difficult” generalities, then turned to someone who’d just walked up to complement her on how cute her dress was. It’s just hard for people to deal with difficult things.
Kate:
You are doing something already that, to me, is great therapy, for you and yours. Writing, as you already know can be helpful in many ways. Just getting some thoughts and feelings out of our heads and down on paper can make things just a bit easier. Also, just the thought of helping others through your experience is another thing that can help a little.
As I have mentioned before in another post, instead of keeping this secret, I too am sharing my experiences of loving addicts (one being my son who is now 26 years old and after tempting fate many times in his active addiction, just celebrated his 5 year anniversary of sobriety). I feel it is almost my obligation, if I even help one person to avoid some of the devastation, fears, anxieties, heartbreaks, etc that I experienced.
I have no advice, just experience. I can offer this. Keep on loving and caring, for H and all your loved ones, especially yourself. When I learned to accept and allow, things became a little more clear each day.
Positive thoughts for you and yours,
Denise
Kate:
You are doing something already that, to me, is great therapy, for you and yours. Writing, as you already know can be helpful in many ways. Just getting some thoughts and feelings out of our heads and down on paper can make things just a bit easier. Also, just the thought of helping others through your experience is another thing that can help a little.
As I have mentioned before in another post, instead of keeping this secret, I too am sharing my experiences of loving addicts (one being my son who is now 26 years old and after tempting fate many times in his active addiction, just celebrated his 5 year anniversary of sobriety). I feel it is almost my obligation, if I even help one person to avoid some of the devastation, fears, anxieties, heartbreaks, etc that I experienced.
I have no advice, just experience. I can offer this. Keep on loving and caring, for H and all your loved ones, especially yourself. When I learned to accept and allow, things became a little more clear each day.
Positive thoughts for you and yours,
Denise
Katie,
Keep processing the feelings. Not everyone gets a miracle, and forming a plan for an uncertain future is a large and painful task.
I have dear friend from Junior High who suffered extensive brain damage after a car accident that involved alcohol. He has never fully recovered.
He is a delightful person, but not the same young man I went to youth group with. Some days I know his mother wondered if death would not have been an easier reality… but now he is truly her helper and companion.
Just remember that you have many friends who care about you and all of your family. Hang in there and be sure to take care of yourself along the way,
Laura
Katie, there is nothing you can say to convey what is really going on. There is no magic ways to comfort others with optimistic reports. I think people get it that you are just trying to accept what is going on so you can advocate for his care.
You can say he is not doing great, but it’s not that you are feeling hopeless, you are in the process of accepting his recovery, and no one knows where that is on the spectrum of brain injury recover.
Accepting the current reality, does not mean you have excluded hope. And you can say that. It’s too complicated for you to have a small answer, maybe a shrug of the shoulders can convey enough to all your well-wishers.
I do think the message of getting younger adolescents into treatment early, is vital. I was like a one women advance team to anyone that listened to me. The signs are so obvious in other kids when you have a child who has gone through it, it’s just too impossible for parents to see their own children’s reality.
The behaviours do spiral pretty quickly and it’s overwhelming to think it can’t be handled at home. That is not our culture, we want to fix problems at home. You did what was best. That is way better then most families do for their kids. You tried hard. Most parents do nothing about an underage child’s regular drinking and drugging!!!
I got so much criticism (especially from my daughter’s boyfriends parents)I can not even think about the depths of their sorrow, it’s unimaginable what they have gone through.
There are whole web forums against parents doing what i did to save my child, the lack of understanding about addiction in our country is horrifying, all addicts tell you it starts in early adolescence, not adulthood. The longer it goes untreated addiction progresses.
Maybe when our healthcare system treats mental health and addiction on parity with the other health issues people have, as a society we will not be blinded to the early stages of addition and getting children into treatment.
Continuing to think of you guys often. I still struggle with what to say here, but know that we’re still here for you and will be through this part, the next part and all the parts to come.
I think often when people know you or a loved one is going through a serious illness or injury the “how are you doing” or “how is H doing?” question is really just “i’m thinking of you” Just like you’re not sure what to say, other people don’t know what to say either. Don’t worry about being Debbie Downer.
Perhaps you could simply say something like: It’s progressing slowly, and because of the extent of the damage, it will be a long road. BUT we are so grateful he is alive!
Katie, I hate to see you torturing yourself with guilt when you have so many other reasons to be upset. You know that you tried your hardest with what you knew and the resources you have at the time. Sure, if you knew this was coming you might have done something different, but you didn’t know. You can’t judge your past actions in light of new knowledge you didn’t have at the time.
It’s hard for friends to know what to say, because even if they realize that H is unlikely to recover completely, they don’t exactly feel like that is a cheery thing to say. Myself, I mostly avoid chiming in to say that I’m sure he will get better because you are so determined and such a wonderful mother, because even though those things are true, they don’t guarantee his complete recovery. But when you are posting on Facebook about how you are feeling, making a cynical/realist comment seems uncaring and unhelpful.
Given what you have shared about H’s condition above, I am going to concentrate my prayers for him right now on his walking. I know you said that walking is a goal that is very important to him. I don’t know if this applies at all, but remember how babies kind of concentrate all their energies on whatever skill they are trying to master at that time? Maybe if he gets the walking, his brain and his spirit will have more energy to progress in other areas. That’s probably not very scientific, but who knows?
I don’t want to go into my own experiences with an addicted person because the story is not just mine to share, but … nothing that happened led me to believe that there is much another person *can* do, even when you love someone, even when you’re a family member. Unfortunately, there isn’t a cure, not even one you can buy only with gold and blood and your own kidneys. By reacting differently, you might have kept H from this particular outcome on this particular day, but I don’t believe that there is an “adequate” way to address a person’s drug use “before it’s too late” aside from never letting them encounter it at all. The addict I know once told me that that first sip of alcohol was like a key in a lock, it was something certain brain receptors had been waiting for since birth. It’s a fight the person has to have with his/her own intrinsic body chemistry, and it’s a HARD fight that many lose. I think you are being far too hard on yourself for failing to prevent your son’s drug use.
I will be keeping you and H in my thoughts and hoping for continued improvement.
Katie, I know it’s hard to accept, but you could have said all of these things to H and it most likely would not have helped. He knew the risks, but he is a teenager and teenagers are risk takers. Some people are drawn to the very danger that drugs present. H’s addiction is not your fault, as young as he is now and was when he started.
I guess this is part of the process and I know as a mother you will always probably have some guilt, but our children are people with their own minds. We certainly mold them in some ways, but at some point they make their own choices. I appreciate your sharing this painful process with us and I hope it is therapeutic for you. I, too am not the type to seek help with my problems, but wow, I do think some therapy would help.
Wishing all good things for you.
This post is really beautiful, as are so many of the essays you’ve written on H’s trauma. In the future, with a bit of work, they could be a really beautiful anthology. Just a thought…
I don’t think you need to worry about what other people are wanting to hear. While a miracle would be amazing, and something everyone wants — we’re also here for you no matter the outcome. It must be absolutely devastating to think of him missing his graduation and facing long term disability and care. I think of you and your family every single day.
I often feel like screaming when the most well meaning of people persist in speaking as if just lighting enough candles will eventually reverse a serious medical trauma. Then I think of Yoko Ono lighting a match and waiting patiently for it to burn out, something she says she did many many times while going through a rough period. They have no proven medical efficacy, but candles and matches never say the wrong things. And this post was particularly beautiful.
katie,
i am a long time reader and have been checking your personal blog daily since i found out this horrible thing happened. no one deserves to go through this, especially someone who so clearly works so hard to focus on the right things in this life and takes nothing for granted.
sometimes i do think one of the most difficult parts about something bad happening to a person is telling and discussing it with other people. i lost both of my parents in under a year and a half before the age of 33 and i almost feel embarrassed to tell people because i worry about their reactions–pity, not knowing what to say, etc. it’s rough to manage other people’s feelings when, as you said, i’m already dealing with my own grief. the temptation is to say i’m fine just to change the subject
You are very wise to hope and grieve.
K, you did everything you could. He would not have believed you if you had told him about the possibility of brain damage or physical disability. Teenagers believe they are invincible.
In the YouTube video you posted of H playing guitar, I noticed there was a hand drum in the room. If that’s his drum, and it’s still around, you might want to let him handle it, maybe with you holding it if he can’t. It’s much less complex than the guitar. I like it that you are reaching out to him through music he loved.
This is all so heartbreaking, yet I know through your sharing (and excellent, thoughtful writing) you are helping to educate others, and to comfort others going through the same thing.
Please allow me to echo Diera’s comments about there not really being much you *can* do in the face of someone else’s addiction. I say this as someone who watched my nephew go through a very similar trajectory- complete with the severe traumatic brain injury (as a result of being hit by a car as a pedestrian while high). Please, please stop beating yourself up over this. There was nothing my sister could do either. From the perspective of someone who watched the whole thing, please try to accept that truth and focus instead on helping your son get as well as he can be. The Shepard Center in Atlanta did wonderful things for my nephew; hopefully you can get H into a comparable facility.
When people ask how my schizophrenic father is, and I tell them the truth (maximum security mental hospital, bored, lonely, angry, crazy), they wince. Or at least some do, while others try quickly to find a bright side (such as, you are such a good daughter to stay in touch with him and have a relationship with him, etc.etc.).
If I tell people that he’s mentally sick and don’t give any details I typically receive even more positive responses (aren’t there such great drugs to treat that nowadays).
For my Dad, there is no cure. I’d give one kidney and a leg or arm if there were. There is no “getting better.” The people who respond to *what is* with winces and genuine sympathy make me feel better inside. It’s nice to be validated. It doesn’t mean I wallow, I don’t, but it’s a lot better than pretending every thing is fine.
I’m sorry, and I must say I understand. When my father in law had a catastrophic stroke that turned him from a multidegreed PhD in nuclear physicist into a person who can’t read cat in the hat alone it was crushing. My husband wasn’t even 30, we hadn’t yet had our child and we all morned for the future that we had lost.
Its crushing to go to bed one morning certain that a specific future is just around the corner to wake up the next day, or get called home from work, to find your life exploding around you and all you can do is damage control.
Its been almost 4 years since the stroke and he’s still alive, but nowhere near how he was. I think its taken us this long to come to accept what is. People ask about him all the time and its hard to answer them in a way that wont offend. We’ve come to just say that he’s doing well and something positive that has happened in the past month. Even if its just a small thing, like M peeled his own shrimp.
Its crushing, its maddening, and makes you tear your hair and scream. You go through all the stages of grief 50 times over, and every time there is a new set back you do it all over again. Its normal, and its to be expected. Just do the best you can and love all your children however they turn out to be.
good luck.
You, your family, and H are in my prayers.
Keep hoping for that miracle.
I am just catching up on your blog-and am so, so sorry to hear about what has happened to your son. Love to you all..
Reading this I was just struck with the fact that your life will be forever altered by this, no matter what happens. Your life will be before Henry’s overdose, and after. I know that may seem obvious but I think the seriousness is just now hitting me. At first it seemed like he was going to be fine, recover like all those stories you hear, but this post really illuminates the reality of the situation.
In response to the other comments, I agree completely that you cannot blame yourself for what happened. Maybe there was A Big Sign when he was 14-15 years old that should have spurred you to send him to Montana then, and maybe you will share that in the future. But I just hate to see you beating yourself up, swallowed by this guilt, when as a person who was recently a teenager, I just can’t see that you could have done much.
I have a profoundly autistic son who just turned 18 and would be graduating now, too, but instead he’s still (and may always be) a mute 3-year-old. So I really do know how you feel and I want to tell you something that I hope is comforting but it may sound harsh: Don’t blame yourself and if you can, move on while keeping a special place in your heart for your son and this tragedy.
Maybe doing something different for your son would have helped, but maybe it would have made things worse. Unless you’re sure doing something different would have helped and you know exactly what you should have done, then focusing on this doesn’t help you move forward. Worse, it could even jeopardize your family by forcing everyone to continually relive this tragedy instead of dealing with it and moving on.