Free now
Posted on 06/20/2010 02:18 pm by kagranju
During the five weeks that Henry was hospitalized before he died, we took many photos of him. I haven’t and probably never will share most of those photos publicly because as much as I HAVE said publicly about Henry’s injuries and death, the photos feel too raw and personal. In the first and last week of his time in the hospital, he was on a respirator, and hooked up to so many tubes and wires, and he wasn’t conscious. His physical injuries are very apparent in the first pictures as well. In the middle weeks, when he was off the respirator and attempting to come back to us, he was so frail and thin and confused. He wanted so badly to be able to communicate, and was so frustrated that his ability to speak was primarily limited to “yes” and “no.” As the weeks went on, even those one word answers often became too much. The pain in his eyes as he struggled to communicate during that time is something I can hardly bear to think about.
All of us in the family took turns being with Henry 24/7 during those 5 weeks. He was never alone. He couldn’t walk or change positions in bed on his own, or even feed himself, so we took care of him like a baby. In the beginning, he could sit up in a chair or a wheelchair, but even that pleasure was taken from him as his brain injury progressed. Sometimes he just laid in bed and cried out, and one of us would rub his feet or stroke his hair. It was unbelievably painful seeing our boy waste away slowly before our eyes. I knew in my heart that he was getting worse, not better as the weeks went on – maybe others did too – but we all continued to assure each other that we would one day be bringing him home, some how, someway.
In the last 48 hours before Henry went back on a respirator, the last two days during which any of us ever got to hear his voice at all, my brother Robert spent one of the nights at the hospital with him. Henry had a very bad night, crying out in discomfort but unable to speak, and shivering with what doctors determined were “autonomic storms.” Robert kept asking Henry if he wanted various things – like a drink of water or ice chips or a cool cloth on his head. Henry couldn’t answer much of the time, but when he could manage it, he said “no” over and over. At about 3am, Robert felt really helpless and asked Henry, “Well what do you want?” and from his hospital bed, Henry looked Robert right in the eye and answered in more words than he had used in two weeks, “I just want to be free.”
Robert told other family members what had happened, but he didn’t tell me until the day of Henry’s death – a day during which I was struggling mightily to let go of my son for the last time. I made Robert swear that what he was telling me was true, and then I went back into Henry’s hospital room with a fresh determination that I would let him be free from his broken body and terribly injured brain.
I hope he is free now – free of pain, free of the addiction, free of shame, guilt and hurt. That’s all a mother ever wants for her child – freedom from the things that make him suffer. That’s all I wanted for Henry, from the day he was born.
06/20/2010 at 2:31 pm
Much love Katie…He is now free.
06/20/2010 at 2:34 pm
I’m absolutely certain that he is free and happy. The strength that you and Chris had in telling him tthat it was ok to let go is beyond comprehension. That is love. Pure parent love. I miss him so, so much(I’m weeping as I write this) but at the same time am so relieved that he no longer hurts.
06/20/2010 at 2:34 pm
bless your brave heart kaite. you are henry’s hero.
06/20/2010 at 2:35 pm
Oh Katie! I read this entry with tears! I can only imagine how Henry wanted to be free! Please continue to be easy on yourself and do what you need to do to grieve. I read your entry over at Babble about the grief and joy. I have lost a newborn child. I stayed in bed for long periods of time. I felt like I was 500 lbs and couldn’t get out. I finally started doing what you are doing. Out of bed a little more each day. Sometimes I still retreat to my bed when certain dates come up. I want to hide. It’s normal what you are feeling. It’s such a deep pain of grief. Eventually, you will notice that you are out of your bed more and can do more things of normal life. Take care honey! I am praying for you still and I believe that Henry is free! Free from his pain that no child should suffer!
06/20/2010 at 2:41 pm
If there is one thing you can be sure of it is that he is free of all suffering. That you were able to tell him that it was okay to let go instead of begging him to hold on is amazing to me. That was unconditional love–trying to free him of pain, by taking on the pain of losing him. You and Chris were good parents to the very end. I pray for the day when YOU can be free of some of this pain.
06/20/2010 at 2:43 pm
Because our sons have shared some aspects of the same journey, so much of this resonates with me. The other night I dreamed of you, looking on city streets for Henry. Then, him, peeking around the corner, saying to you that it was OK to let go.
I’m not sure why exactly, but I am so relieved and impressed that he was never left alone. What love your family shares with one another, and now, with the world.
06/20/2010 at 3:04 pm
My heart just breaks for what you and your family are enduring. While things are still so raw there really are no words that will lessen your grief but I hope knowing your son was able to express his desire to be free may bring you some small measure of comfort. There is one thing I can tell you though, which hopefully will allow you to let go of the wonder and the worry of the events which took place that ultimately landed Henry in the ICU. As a survivor of severe head trauma, I have no memory whatsoever of the incident that put me in the hospital at the age of 18. My recovery took nearly a year and even 24 years later I only know what happened from the police report and what was reported in news papers. Shock sets in before pain. As a parent I am sure that must haunt you to wonder. As a survivor, please know that I as well as many others I was introduced to, those who had suffered merciless beatings, stabbings, shootings and such, without exception, have one thing in common. None of us has any recollection of what occurred just prior to and after the incident which placed us in the hospital. I truly hope knowing that will allow you some closure to the “before” so you can concentrate on the present and give yourself permission to heal.
You and your family will remain in my thoughts for a very long time. I wish you all the peace, healing and love you so very much deserve.
~Juli
06/20/2010 at 3:18 pm
Certain, just certain he’s free.
06/20/2010 at 3:29 pm
Tie dye wings, no pain,knowing he will be with you again.
06/20/2010 at 3:33 pm
I was given a story shortly after my bipolar father committed suicide. I’ve lost the actual copy of the story, but I keep the moral with me. ‘God knows when one of his sparrows falls, and in his arm’s and love, all things are made whole again’. Your beautiful son is most definitely free, and in time, his memory will help you heal.
06/20/2010 at 3:57 pm
this post, like most of yours, gives me chills right down to the bone. i wish freedom for all of your beautiful hearts. freedom and peace.
06/20/2010 at 4:16 pm
I couldn’t agree more with Leslie.
I don’t know whether I would be as brave as you and Henry’s dad. That is a lesson of love.
Marta from Lisbon, Portugal
06/20/2010 at 4:49 pm
Katie,
I have to believe, in my heart of hearts, that Henry is free. He is soaring….
06/20/2010 at 5:06 pm
Katie, I can totally relate to this post. On June 22, it will have been 7 years since my son died. I remember the pain that he was in, and he kept hanging on. I believe he was hanging on for us and I told him that it was okay to go, if that is what he needed to do. And he died in my arms.
Both of our boys are free.
06/20/2010 at 5:10 pm
You continue to amaze me and inspire me. My heart aches for you and this entry brought tears. Thank you for sharing.
06/20/2010 at 5:15 pm
Oh Katie. What an unbearingly brave thing that was for you to do. What a blessing it is to Henry to have you as his mother, willing to let him be free when in your heart the last thing you ever wanted to do was let him go.
Prayers and blessings always for you!
06/20/2010 at 5:39 pm
My perspective is that of a sibling of someone with a severe traumatic brain injury. I cannot speak from the perspective of a parent of someone with a severe disability. However, I think that Henry’s request to be free, and ultimately his death, saved you, him, and your family from a lifetime of a different kind of grief. I realize this is no consolation to you right now. However, if Henry had lived, there still would have been much grief involved, as he likely would not have ever again been the same person he was before his brain injury. As horrible as this sounds, there are many times I have thought that it would have been easier if my sister had died from her brain injury, suffered in a car accident at age 18. That was over 20 years ago. I have never talked to my mother about this, but I’m pretty sure she would not agree with me. In any event, my mother now has a dependent adult child that she will have to take care of, worry about, and support until she dies, and then that responsibility will fall to us siblings. It is a huge burden, in terms of emotional, physical, and financial effort. And, the burden passes on to the next generation, which is the most unfair part of the whole thing. Yes, my sister has some quality of life, but she can’t do what she really wants to do, and she can’t maintain friendships with the people she really wants to be friends with due to physical and cognitive disabilities. She is wholly dependent on others for many things. I don’t believe that she would have chosen to live this way if she had been given a choice.
I hope these comments aren’t upsetting to you during your time of acute grief, but I did want to provide another perspective on the other types of losses when a person with severe injuries doesn’t pass on.
My heart goes out to you, and I hope some degree of peace comes in due time.
06/20/2010 at 6:06 pm
xo
06/20/2010 at 6:25 pm
Katie….
He is FREE!!
You have to know this, so that you can begin to heal.
HE IS FREE!!!
06/20/2010 at 6:35 pm
Giving Henry the permission to let go, essentially setting him free, is quite possibly one of the most profound acts of love that I have ever heard.
06/20/2010 at 7:44 pm
I cannot even begin to imagine that last day. I just can’t. “So sorry for you” doesn’t even begin to cut it. Every post of yours just totally breaks my heart. Even though I don’t know you (only through a ton of others who do), this is event #3 in my 45 years that has changed my life. It is huge even to those of us who have never lived through such. I tell Henry’s story to someone every day – most days to many.
06/20/2010 at 8:19 pm
Katie, I don’t know you and I didn’t know Henry.
But I KNOW Henry is free. I just KNOW it. It has to be so.
I send my prayers forth so that your heart will be free of this fresh pain, and I hug my nephews even closer because of Henry.
06/20/2010 at 8:39 pm
Years ago, I received a baby gift when my first child was born. It was art work — ‘a poster’ if you will. This was the message:
‘There are two lasting gifts we can give our children:
One is roots, the other is wings.’
Your words are riveting and compelling. You gave Henry those gifts (and more) abundantly, over-flowing and in multiple portions. Bless you.
06/20/2010 at 9:00 pm
I am sobbing from this story. Katie, that is so beautiful. I am so happy that he is free. I know your pain has only begun. But I hope this brings you some solace in your heart if not now (it’s too soon), then at some time. Thank you for being so fearless and loving in sharing Henry with us. xoxoxo
06/20/2010 at 9:24 pm
And I’m sure Henry wants the same for you – release from pain, guilt, hurt. You did an amazingly loving thing in honoring his wish to be free. Letting go must have been beyond comprehension for you, but I hope that knowing you helped him find his peace can bring you even an iota of comfort…someday.
06/20/2010 at 9:25 pm
There will always be a million what-ifs, if Henry had lived. He was seemingly care-free, from what you have written, and you as his family and parents allowed him these freedoms, which can be a beautiful thing that few are blessed to experience.
Like a caged bird, perhaps you will think if I just did this a little more or that a little tighter and more restrictive, he would still be here. But a bird’s instinct and nature is to fly and fly away. Always. You can put him in a cage, feed, change his newpapers, and watch him dilligently everyday. But his purpose is to be a free creature, a free spirit.
I’d like to think that if Henry was ever in a place in his consciousness away from this world, where he had a choice of going towards the light and being free, or being left back with the possibility of continuing addiction, or severe disability and confinement, perhaps he had one last choice to make which could have, may have been the right decision to make. Some people who have ‘died’ and come back or had near-death experiences, talk about being between two places. Some seem to have a choice which way to go, some, it was a glimpse into what may be an afterlife, and they were pulled ‘back’.
My father, in his last 24 hours here on earth, I know he was between two places. His gaze was looking towards something else, I could not see. He was in extreme pain. He was in straps because he would not be still. He wanted to be free. He recounted to me all the places he wanted to go – South Africa, to be with his mother in heaven. Anywhere but the present pain and condition he found himself in. I had a choice to have the nurses increase his Ativan and Morphine so he would be more ‘comfortable’. Or allow him to suffer longer. Daddy wanted to be free and his condition was such that inevitable would happen soon. He slipped into a coma, and died, still wincing in the hours before death. Still recoiling his very thin body with each new episode of pain that ran thru his body.
It’s been 7 years and as sad as I am that I don’t hear his big laughter or see his smile and all his other nuances, and even though I still cry, I’m so glad that he’s free. Free from his alcoholism, free from the confusion of life, free from the pain.
Love is so sweet and deep and painful, that to lose someone you love that deeply, cuts through your more inner soul. But each day got better, he day, the memories of that pain and what he went thru subsided. Each day missing him got more bearable.
But I still cry and I still love him very much.
06/20/2010 at 9:33 pm
And, Katie, it was a very beautiful thing that only a loving and nurturing mother could do, with determiniation, to see that her son’s last wishes were fulfilled.
06/20/2010 at 9:41 pm
Your story continues to resonate with me on so many levels. I am heartbroken at your loss, and want to do something. But I realize as time goes by that all I can do is educate myself and my children. This story, http://www.pacificsun.com/story.php?story_id=4004 weighed heavily on my mind because this is my county. These stories, Henry’s story, are happening in my back yard. Your pain in heartbreaking and Katie, you are making so many of us aware. It could be me, in ten years with my now almost five year old. You are loved from people everywhere. People who know you and people who don’t. We will take Henry with us. We will share. http://3.bp.blogspot.com/_c8qULWapzjg/TBK7EbShbqI/AAAAAAAABQs/iB6wd0Y4_rs/s1600/henry2.jpg, http://2.bp.blogspot.com/_c8qULWapzjg/TBK67UHU3hI/AAAAAAAABQk/JI3WDe9yBKU/s1600/ggbridgehenry.jpg
06/20/2010 at 10:16 pm
Katie always remember: Earth has no sorrow that heaven cannot heal. Henry has healed now, Katie you should know that.
06/20/2010 at 10:31 pm
Katie,
Almost 9 years ago I lost a friend who was Henry’s age in a senseless accident. Silly though it may sound, there is a quote from the movie “Shawshank Redemption” that always made me think happily of my friend. Though I’ve only been reading your story for a short while, it makes me think of Henry, especially today’s post:
“I have to remind myself that some birds aren’t meant to be caged, that’s all. Their feathers are just too bright. And when they fly away, the part of you that knows it was a sin to lock them up does rejoice, but still, the place you live in is that much more drab and empty now that they’re gone…. I guess I just miss my friend.”
I hope that your joyful memories of your boy’s brightly colored life bring you and your family some peace and comfort during this wrenching time. With love and great sadness.
06/21/2010 at 1:11 am
Katie,
I struggle to write this. I simply cannot imagine what you are going through and hope that I never have to face it. The courage in the face of all the adversity your family has gone through over the past few years is inspiring. I know mere words can never heal the immense pain your family is feeling. Henry was a beautiful boy and I know you miss him terribly. I am so very sorry for all of you and feel quite inadequate as I search to find the “right” words.
I only know of Henry through your writing. My sister sent me your Attachment Parenting book shortly after my first son was born in 2001. I didn’t realize I actually knew who you were (I believe you were the first person I ever Googled). I was a classmate of your brother’s way back when at Cascade. Although it’s been many years since I’ve seen him, I know he would never want to cause you more pain: I simply believe his words to be true. It is quite the small world, isn’t it?
I sincerely wish I could offer some words of wisdom, or some words to help you deal with the immense pain you are feeling. There are simply no words for the bereaved, save for “I am so sorry for your loss.”
There is no schedule for grieving, no set time for ever “getting over it” – if there is such a thing. I know that letting go of one child as you prepare for the arrival of another is no small feat. You are an amazing woman and I can only hope to be half the person you are. My heart is with you at this time: one of terrible loss that no one should ever have to go through and also one of an incredible journey with a new life to be welcomed to this world. I wish you and your family peace and love.
06/21/2010 at 5:20 am
Katie I’ve got chills…..sounds like Henry was very capable of telling you his wish and he found the strength to get it out…you did the right thing, he is free.
I did visit the blog of your friend who’s son is struggling with the car-accident induced brain injury. My daughter had the same injury, Difuse axonal shearing. She is one of the success stories and I sent him a message letting him know it is possible.
06/21/2010 at 6:49 am
just here, receiving, sending love.
06/21/2010 at 7:23 am
Oh, Katie. Thank you for sharing this. I’m incorporating that word into my own heart today…. free.
06/21/2010 at 10:28 am
love to you and your whole family.
06/21/2010 at 11:10 am
I’m reading this and crying. Henry was so very well loved by you and the rest of his family. And I’m sitting here, holding all of you in my heart.
06/21/2010 at 6:12 pm
My mother died almost 3 years ago after years of suffering the ravages of Parkinson’s disease. Between the disease and the medications to treat it, she was no longer herself in body or mind. We fought to keep her with us for two or three years prior (she wasted to less than 85 pounds). Willing her to hang on, even as she slipped away.
I sat with her during the last week of her life. Knowing she was there, but not really there. Telling her she could stay and fight or leave on her next journey. I don’t know if she heard me, I don’t know if I was convincing. I sat with her all day and slept on the floor in her room at night. After six days, I left to spend the night in my own home. That’s when she chose to leave us…when she knew I wasn’t there, when I wouldn’t see.
I felt horribly guilty for leaving her. I felt if I had been there, she might have stayed a while longer. I have since realized it wasn’t my decision to make. It was a decision between her and God.
My mom was never a fighter and she suffered mightily for over 10 years. She decided what was right for her, and I respect that. I too have been looking for that ‘sign’ that she’s still around. I haven’t gotten it yet, and I go from being sad to angry to accepting about that. Ultimately, that’s her decision as well.
I take comfort in knowing she’s with her mother (who she lost in 1954) and her dad — along with gobs of other loved ones.
There is a pretty widely known poem used by hospice, I read it to my mom in those last days. I find it comforts me still when the sadness comes creeping:
*****
Gone from My Site (A Ship Leaves…)
by Henry Van Dyke
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: “There, she is gone!”
“Gone where?”
Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port.
Her diminished size is in me, not in her. And just at the moment when someone at my side says: “There, she is gone!” there are other eyes watching her coming, and other voices ready to take up the glad shout: “Here she comes!”
And that is dying.
******
God bless you, Katie, and your family. God bless you, Henry – Sail on.