Monday, August 18, 2008

Final Thoughts

My wife used to say that our kids were a stable of thoroughbreds. We had 4 magnificent stallions and a unicorn. The unicorn was beautiful, magical, and enhanced the lives of anyone crossing his path. He was creative and brilliant. He taught us about true forgiveness. He taught us to love unconditionally and not to judge. He taught us to laugh and have fun under any circumstance. Over the years we tried, foolishly, to turn the unicorn into a stallion. The unicorn tried valiantly to become a stallion. We all came to realize that a unicorn is magic, and can’t be kept forever. Kyle was our unicorn, and we were blessed to have him 24 years.


Kyle's (Ryan to us) memorial service was yesterday. There were hundreds of people - so many people they had to set up folding chairs in the hallway outside the door. It was an awe-inspiring testament to the power of his life, and the impact he made on so many people's lives. He packed more living in his 24 years than most people would in 10 lifetimes. The service was beautiful. Kyle was a very spiritual person, and had a couple scripture verses on his wall they incorporated into the service. We sang his favorite hymn - "Life Flows On In Endless Song" at the end. There was a guitarist playing 2 songs by his favorite band, Five Iron Frenzy, "Every New Day" and "If You Could See Me Now". It was wonderful.

Now comes the inevitable soul-searching.

I'm wondering if it was a mistake to medicate Kyle. My wife says absolutely not, it was the right thing to do. His most debilitating symptom prior to treatment was his all or nothing perfectionism that manifested itself in terrible outbursts of temper. Not directed at other people, but at himself. It was so painful to watch. His treatment did take care of that, and we were all thankful.

But as things went on, as so often happens, one med begets another, and before long he has a laundry list of medication. He was medicated to the point he wasn't experiencing life at all. His last 2 weeks seemed to be good weeks for him, but he still seemed over-medicated.

His doctors and care workers were exceptional. This was NOT a case where they callously over-medicated. But Kyle would ask for more and more. He couldn't sleep, or his anxiety was particularly bad, and so forth. The doctors, truly interested in his comfort, would try to help him. This is how he ended up with such a large amount of daily meds.

His death appears to be a freak accident. He fell face first into a coffee table in his room. The TV cord was exposed, and the TV was on the ground. We are guessing he tripped on the TV cord, and fell into the table. This accident could have happened with or without medication or alcohol, so I'm not blaming his death on that.

So why am I questioning if medication was the right choice? It comes down to a quality of life issue. Early in his treatment, when the Lamictal started to balance him and took away his inward-turned angry outbursts it was a very good thing. As things continued, and they added more and more medication, he lost the ability to do many things. Towards the end he was having a hard time leaving the house or meeting anyone. The disabilities he'd acquired were as debilitating as the one's he'd fixed. Having the benefit of hindsight I'm wishing he could have lived his last few months in a different way. Or do I? The last few months were very memorable to my daughters, who would hang out and play games with him every day this summer. The old Kyle would have been gone half of the time, and we'd have been worried constantly.

I will wrestle with this the rest of my life.

If anyone else is in the same boat, take your child for who they are. My wife checked on Kyle every day. She hugged him every day, and told him she loved him every day of his life. Whether he was in treatment or not, or properly medicated or not, is meaningless. It likely didn't impact when he died. What did matter were the people and opportunities that made him feel good about himself. The opportunities his family had to make him feel loved and important. That we can look back and know we hugged and told him we loved him. When it's over, unconditional love is all that matters.

40 comments:

ariadneK, Ph.D. said...

My thoughts are with you, my dear. Take care of you and your family while keeping the angel close to your hearts.

Stephany said...

My heart felt thoughts and prayers are with you Jon, and your family. Sending love and peace, I am at a loss for words, and I am so sorry to find out this news.

Anonymous said...

jon, i am so saddened to learn of this tragedy. my condolences to you, the family and all his friends.

Philip

Ana said...

I'm deeply sad. Can't say nothing but I'm sorry and that you'll all be on my prayers.....

Gianna said...

Jon,
Love to you and your family.
I will pray for all of you. You have been on my mind for several days.

Mark p.s. said...

Sorry for your loss, my condolences to you and your family.

Anonymous said...

I'm sorry to hear of the loss of your dear child.

janet said...

I'm so sorry for your loss. God be with you during this time.

phd in yogurtry said...

My deepest condolences to you and your family. Psych treatment, medications, its all very hard to know what is "right," so all we can do is seek and try to find the best fit. You allowed your son to have a voice in finding what seemed to work best for him. Parents can do no better than that. I'm sure what he would want is for you to feel at peace.

Janes Insane said...

Your last paragraph says it all. Whenever you wrestle with any sort of guilt, read that paragraph. You gave him the greatest gift in life: unconditional love.
I remember when I first found your blog, it seemed your life was hell. Comparing that with Kyle spending every summer day with his sisters, then wondering if the medication was wrong, is a no-brainer. Your daughters are left with good memories of their brother and you know what? I think that's what Kyle would have wanted.
I hope you feel all of our love & support.

DutchBitch said...

Over here via Jane's blog. Though I don't know you, I wish you all the strength in the world to be able to cope with this loss... To you and your family...

Not Very Anonymous Mom said...

God Jon, I am so sorry to learn you have lost your unicorn. I can't imagine how you must feel, but I want you to know that your son's story made a difference in my life, and I will always feel that your family's unconditional love for your Kyle was an inspiration to me when I was learning how to come to terms with my son's illness.

Much love to you, and your family. My heart is with you in your grief.

Tug said...

Here via Jane, my thoughts and prayers are with you and your family...

Stinkypaw said...

Here via Jane, my condolences to you and yours.

Deb said...

HEre via Jane as well.

Sending you and your family heartfelt condolences.

Kateri said...

I came here from Furios Seasons. I'm so sorry for your loss; you are in my thoughts. be well-

savia said...

I am so glad that your son was loved every day of his life. My thoughts are with you and your family.

Raine said...

I lost my husband recently. Because of that, I came into contact with others that had recently suffered losses of loved ones. What I have observed with myself and with them...... is that we feel all feel guilt over something and we second guess ourselfs. We should have done this, we shouldnt have done that. At the time you did what you thought was right and you did it for good reason. I dont know exactly what this mechanism is that causes this when we lose someone we love so very much ....... but it seems to happen to most everyone. Try not to do it to yourself. From what I am reading, medicating him made a difference in a positive way and was a good decision. Second guessing yourself now........it only hurts, rubbing salt in the wound so to speak. You loved him well. I can see that.I am sure he knew it also.

Carolyn said...

Oh Jon, I am so very sorry. I don't know if this will help or not, but I am bipolar and currently experiencing the rages, and I hate who I am when this occurs... I am trying desperately to get on my meds but it's complicated because my thyroid is off and I'm pregnant... of course I can't speak for your son but I can tell you that the vicious circle that occurs with me is that when I rage, I feel like shit afterwards for having broken things, yelled at people, whatever, and then I feel miserable... being miserable makes it all the easier to get mad... then I rage over something even MORE trivial... then I feel shittier... you see? So if your son was anything like me, he was very happy for the meds. Lamictal, by the way, is my "wonder drug" as well and I'm trying desperately to get back on it. My thoughts and prayers to you and your family.

Naturalgal said...

I am sorry for your lose.
Take Care,
NG

Angie said...

I remember three years ago when I came across your blog and read as much as possible in awe of your family's strength. I happen to have a 10 year old unicorn of my own and want to thank you and your family for making us know that we are not alone. I am so very sorry about your son, and I do understand the regret that accompanies the reality that our babies need meds with side effects that can rival the illness they treat. Please remember how he must have felt on the inside when his mind wouldn't rest. As a mom who carried the bipolar gene over to my son, I think that he would want you to know that life on the meds was more much more peaceful than not. All we can ever wish for is peace. Namaste

Cheesemeister said...

I don't know you but I am very sorry for your loss.
With medication it's six of one, half dozen of the other. I have bipolar disorder and can't tolerate most prescription medications. But I have to have something. I take non-prescription lithium (lithium orotate) and it really helps a lot. Everyone's body chemistry is different. Also, when you chose to have your son take medication you did it because you wanted the best for him. You did nothing wrong.
I wish you may somehow find peace. Again, I am sorry for your loss. It is a terrible thing that anyone should have to endure such sorrow.

kim said...

jon,

i am deeply saddened and so sorry for your loss. however, it is my hope that your words and your actions inspire at least one person and i'm sure they will. it is so very important to love unconditionally and i am so thankful your son had your love and support every single day.

my thoughts and prayers are with you and your family.

Sid said...

Came over from "not very anonymous mom's" blog. While I don't know you or your family, I'm so sorry for your loss. Your view of your son as a unicorn is an amazing analogy, and one I wish more people would embrace when a family member is stricken with mental illness. Most of us get labeled as the black sheep, kept distant and scorned. I'm so glad you didn't do that to your son, so hold it close to your broken heart that at least he knew he was deeply loved.

Pole to Polar: The Secret Life of a Manic Depressive said...

I'm so sorry. You're in my thoughts.

stewbie2 said...

My thoughts and prayers are with you and your family.

Anonymous said...

Jon, so sorry for your loss.

Polarimbi said...

jon,
unicorns are everlasting, magical, elusive, and fragile. to have given life to one, to have taken care and loved a unicorn so deeply and dearly with all your energy, heart and soul is something only you and your wife will know and understand. as the mother of my one and only son, oliver, i shed tears for you, dear friend. i hope that, in time, you will find hope and serenity through your own tears, in the light and peace that that now surrounds your kyle, your unicorn.

sara said...

God, I just found this now. I am so, so sorry.

Aqua said...

Hi Jon,
I found your blog through "My Sad Alter Ego" blog. I am so sorry to hear about the loss of your son. It sounds like you and your wife loved him so much.

Mental illness is so difficult to live with and medication can be a big part of what helps people return to some form of normality.
I say that because for 7 years I have struggled to find "the magic mixture". I have been, overmedicated, undermedicated, not medicated and finally seem to have found a mixture of medications that helped me become me again.

You loved your son and unfortuntely it is often a trial and error, mix and match guessing game as to what helps, what overmedicates, what turns the unicorn into a stallion, and then finally what helps the stallion return to becoming a unicorn again.

To me it sounds like you were trying hard to help your son become a thriving unicorn. You did the best you could under difficult circumstances.

Please take care,
...aqua

Kahless said...

Just a stranger passing through but wanted to stop and send you and your family my warm thoughts and wishes.

Dragonfly said...

So sorry for your loss. Sending love and peace.

Polly said...

I'm so sorry to hear of your loss.

Stacy said...

Jon-

I haven't been here in forever, as I have intentionally distanced myself from the "bipolar" world, in an effort to heal myself.

When I came here tonight due to my insomnia and read about your son's unfortunate accident, I was heartbroken and am sending out much love to you and your family.

You have been there for me so many times via your blog, and I wish there was something I could do to be there for you. Please know that I am sending lots of good vibes your way, and will be lighting a candle for you and your family.

Feel free to email me
Stacy
reklaws at comcast.net

Just Me said...

Jon, I will admit that it's taken me so long to come to this page and read because of selfish reasons. I apologize for that. I truly have prayed for you daily and will continue to do so.

I have told you before that your descriptions of your son remind me of me in many ways. We didn't have parallel illnesses, but we had similarities.

My guess is that if he was asking the doctors for more meds, that it's the path he wanted. With enough time it probably would have worked out, either with less meds or more. I know that for so long I thought that the number of pills and then I learned that if I take 35 pills/day I feel good. It didn't take long to start taking 35 pills/day. On the other hand, when I started lamictal the 2nd time and it started working it took no time at all to peel down antidepressant doses to combat mania. That just didn't work because of the rash.

No matter where we are in our treatments, we bipolars will have ups and downs. And one of the things I've learned in the last few years is that there are good things even at the worst times.

He knew he was loved and supported no matter what. That is all anyone really needs to know.

bruces said...

I am so sorry for your loss. My heartfelt sympathies go out to you and your family.

BipolarPrincess said...

I'm so sorry, Jon. Just remember, the beast of mental illness changes often, it's not always just the meds. He knew you loved him.

Stefan Jechel said...

I'm really sorry for your lose. :(

Cristina Romero-Sierra said...

My sympathies, Jon. I'm listening.

PixieHolly said...

I am so sorry...this is the first time ive read your blog, but am in tears right now. Mostly because of your pure compassion for your son, its so touching. I am a 19 year old female who was just recently put on lamictal/diagnosed, so reading your blog is very enlightening but very hard to read at the same time. My heart & prayers are with you