The following was sent to me from a fellow grieving dad, Michael M. and it hits on several points that I connect with. The biggest one is the difficult discussion/decision of letting your child go. Many of us have had to make this decision and it causes great emotional impact. How about you, do you connect with anything in this article?
Permission to Go
Those of us that have been there are the only ones who know the feeling. People can sympathize with you all that they want, but unless you have actually been there, you have no idea. You don’t help bring a life into this world with the intention of outliving them. It is never even a thought in your mind until you are faced with that cold reality. You are here, and your child is not. For some of us it was sudden and happened in the blink of an eye, an accident, a tragedy you never saw coming. For some of us like me, it came through disease, you watched it happen. Worst of all, you felt helpless as it did happen.
I never expected to hear the word Cancer in regards to my 19 year old son. I would have put money on the fact that my children would hear that word in regards to me before I would hear it about them. But that night at the emergency room my world was flipped completely upside down. I had no idea what to do or what to say, but I had to stay strong for him, right?
I spent the next 10 months of my life at my son’s side. I often spent some of those days feeling bad about myself and feeling like I was inadequate as a father for not providing for my family. In retrospect, I wouldn’t change one minute. I was able to spend the last 10 months of my son’s life with him, almost every waking hour. I watched him get better, I cheered on every victory no matter how small or big. But I also watched the cancer come back and break him down in a fraction of the time that it took for him to start building himself back up.
I am a Christian man, but I had to make two very hard decisions that tested me to the core of my beliefs. The first one was when we found out Justin was terminal, that we knew the end would come but we didn’t know when. I had to sit down with my wife and we made the conscious decision to not be angry with God for taking him. It sounds simple but to this day I know people that still struggle with that exact same thing. They still carry the anger that their child was taken from them and it can be blamed on someone. Yes Justin was taken from this earth, but I prefer to believe he was chosen to go when he did. He made the impact he was meant to make, he lit a fire in me to keep his legacy alive through the work I try to do now in saving other parents from the pain. He was chosen to go before all of us. He is the lucky one, he isn’t in pain anymore. We are the ones left here with the pain of him being gone.
The second decision, whether it can be called that or not, was the decision to let him go. Actually it wasn’t to let him go, it was to give him permission to go. People that have not been there won’t understand, but it is one of the hardest things I have done, but it also brings a sense of peace. Justin died at our home, surrounded by family, but he went on his own terms and when he was ready. What do I mean by ready? I firmly believe that he waited until everyone he wanted to see had been there. He was far beyond normal communication, he had so much pain medicine in him that he was hardly coherent, but I know he heard every word. The night before he died all of his siblings came in and told him good night and how much they loved him. He couldn’t react much, but he heard. The day he died was the day the one Aunt that hadn’t made it here yet came to see him and spend time at his bedside with his other Aunt. But once the visits were done, I specifically told him that it was ok. He didn’t have to be strong for anyone anymore, he could go. I watched his mom tell him much the same thing and here is how I know he heard. Either his mom, stepmom, or I were in his room for much of the last 24 hours of his life. The one moment when neither his mom nor I were there, when my wife (his stepmom) and his Aunt were in the room was when he began to draw his final breath. Almost as if he waited for that moment for us to be out so he could spare us from seeing him go. Sure we all made it in for the moment he passed, but I think he heard that it was ok and he left on his own terms.
I will never regret giving him permission to go because I know it gave him peace in hearing that he didn’t have to fight for anyone or anything, he could just go.
Mike M – our son was 17 when he passed from a rare disease he had his whole life. We were fortunate that through most of his life he lived was able to touch many and his health issues were somewhat manageable . That all changed as his bone marrow failed and a rare blood cancer took over his body during his last two years with us. Particularly difficult were the last three weeks of his life as there were complications during a procedure to determine if he were healthy enough to endure a bone marrow transplant, and potentially a liver transplant. During the procedure, the anesthesiologist lost Josh’s airway, he was able to recover it, but Josh required a tracheotomy and was on a respirator for the next three weeks, he no way deserved to leave this earth in that way, we were prepared to manage his care at home in a hospice setting, but instead spent his last three weeks in the ICU at Children’s Hospital of Philadelphia (CHOP), the same place where outstanding doctors helped us manage through a terrible and complicated disease through his whole life. After the first few days, and as things began to deteriorate, Josh was on a lot of medication, and my wife took the bold step of telling Josh it was OK to let go. It angered me and tore me up, but as things got worse, I came to understand that his suffering was worse than anything else and I too gave Josh “permission” to let go and stop the brave fight he had endured his whole life, but mostly in the last two years as he suffered terribly. I remember waking up one Saturday morning by his bedside and pleading with the nurse to increase his medication so he would feel zero pain as we went through the process. We worked with the Palliative Care staff at the hospital and they made sure Josh was as comfortable as he could be. In the end, his suffering ended and we all let go. It was the hardest thing I think anyone could endure, but I do remember a conversation with the hospital’s minister. There was another family in the ICU for a few days and their child had been critically injured in an accident, his family was there to say good-bye as his life slipped away. The minister asked me if I’d rather be faced with a sudden tragedy as this family had, or have our experience of a long and expected decline. What a horrible question, but as I thought and answered, I understood why she asked it, my response was that I would much rather have every moment with my son that I could and be with him through this terribly painful process than to face a sudden end. It’s all pretty twisted. it’s taken me over a year and a half to be able to complete a coherent thought in my head. Therapy’s helped, but my mind still wonders back to that most difficult time. My son’s at peace now, I miss him every day. He’s the first thing I think of in the morning and the last thing I think of every night and usually I’m up a few times a night looking over the bed for Josh to be standing there as he so often had. Thank you for sharing your story, it reminds me that I’m not alone. I feel for you and your family, your son like mine, had to endure an unjust disease, I can only think they are together now, at peace and next to us as we endure each day without them.
Thank you for sharing your truly touching remembrance of Mike. Several months ago my wife and I were each experiencing such envy regarding people in general as it seemed that everyone else had been spared the torment our family was going through. Our beautiful Amy had only been gone for a few months. We were visiting our daughter Krista at her new house, which she had moved into a week before Amy died. While my wife was taking a ‘crying walk’, she saw she was approaching Krista’s new next-door neighbor and tried to time the walk so as to avoid the encounter. The neighbor waited in her car and got out when my wife walked by. She’s inquired as to why it seemed like we were no longer friendly as we had been after Krista first moved in. My wife explained about Amy. The neighbor then told us she had lost her son 20 years before after a lengthy battle with cancer. They talked, hugged, and cried.
I often feel alone in this new grief world. Your sharing reminded me that there are so many others in this army that so many have been conscripted into. Amy died suddenly – healthy one moment, gone the next. I have thought about the question the minister asked you. It’s like that old childhood game – would you rather be shot or stabbed? There is no ‘rather’ answer I can give. Your story helped remind me that I am not alone in this.
There are too many guys in our club. It really sucks.
Our 23 year old son Paul was ripped from this earth instantly. No goodbyes. My sign was a butterfly (http://www.paulfarris.org/butterfly.html)- just as I’ve heard it happened to others who lost a loved one.
I used to be a forgiving man, and I have tried hard to maintain that demeanor. But as all of you reading this have lived and know, we are not the same person. I cannot forgive the people responsible for his death and whatever faith I had before his death has diminished dramatically. I understand “shit happens” but I will never understand this.
Hopefully you are each all able to honor your child, in some meaningful way, which will also help with your pain.
Jon, I couldn’t agree more. Our club sucks. I am blessed with the opportunity to help others by the work I do with a nonprofit. I am able to go out and tell Justin’s story and educate young men about Testicular Cancer. It is truly my way to keep Justin’s legacy alive and hopefully spare other families the pain.
Thanks for your reply, Michael. Volunteerism and advocacy help us and the public.
By no means did I ever include God or forgive Him when my daughter Riley, passed away. It was a feeling that I suppressed for for over a year until a therapist took me through an exercise that allowed me to release that suppressed anger. Now, I try to be very open and brutally honest about my feelings. God already knows what I’m feeling, so why not be vocal about it?
I wasn’t around when Riley passed, and even though I know there’s nothing I could have done, it’s in our nature as a fathers to protect our children at all times. I’ve never felt so helpless…. consciously I could accept that Riley was gone. Subconsciously, I am getting better at accepting it.
I’ve never explored the realm of “giving Riley permission to go” on a psychological level. Not sure if it is applicable in my case…. I guess for me it has more of “forgiveness” than “permission”.
Thank you Kelly for posting on behalf of Michael M. and sharing this.
I lost my Amy in an instant. On Saturday, she was completely healthy. She woke up Sunday with an upset stomach and was gone two hours later. I am a Christian too and am still angry at God (6 months into my grief). You are a better man than I.
John – I get it, I was the same way. The questions I struggled with were “if you are so powerful, why can’t you heal my children”. I now longer believe in miracles. I think things that happen in life, just happen. I don’t believe that someone (God) is pulling and pushing all of the buttons. Bad stuff can happen to anyone at any given time and that’s just life. Once I came to realize this, my anger went away. Like the old saying goes, “shit happens” and it happens to everyone. We just happened to draw a very bad hand.
John, by no means was it easy and I absolutely understand your pain. It was, like I said, a very conscious decision we had to make. I did have one thing help ease the pain. Some people call it coincidence but I do not. For every one of his 19 years (and those of his twin brother) it rained on their birthday..without fail..and we live in Arizona. Justin passed away at 10:30 in the morning, at about 5pm that same day there was an absolute downpour. The difference is, the downpour was essentially on our house. Maybe to the end of our subdivision. I actually have a couple of friends that took pictures because they live less than a mile or two away and were amazed by this huge cloud with a concentration of rain in one place. The picture would give you goosebumps. I may not have received the miracle I wanted, but I got the sign that he was ok and at peace..