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I speak from the heart in this article and have inserted personal experiences into this story.

At age fifteen, I lost my son, Josh, after a lifetime of battling his congenital lung disease, transplant, loads of medications, multiple hospital admissions, and so much more.

There is not much you can say to make this loss better. Saying things like, “You’ll get over it,” “Give it time,” and “I know how you must feel” just won’t do it. As an acquaintance, a friend, or a relative, you want to make it better and “fix it.” Sadly, there is no fixing this horrendous experience, a parent’s worst nightmare. The best thing, in my opinion, is to be there, to check in, not only in the first days or weeks but continuing at intervals for the coming months. Our grief does not end after a week or a month. We would welcome, “I’m here for you.” “What do you need?” “Can I take you to lunch?” “Let’s go for a walk.” “I’m thinking about you.” Grieving parents: comforting words come from without and from within, so we need to remember to speak kindly to ourselves, living gently through our ongoing and long-lasting grief and on eventually, to the healing.

Occasionally, there is that toxic “friend” (you know who they are) that you’ll simply need to drop. Especially at this time in your journey, you do not need or want negativity. It is critical at this time, more than ever, that we maintain positive, upbeat people surrounding us.

Just to know you are there, thinking about me, supporting me, talking, or listening to and sharing my beautiful memories is the best that can be done. This was the most helpful. However, despite all that, after five or six months, no one knew that I had to give up. No one knew that I was contemplating going into the garage and starting the car, that I wanted so badly to “go.” No one knew how much pain I was still in or could tell me how long it might last, nor at this point did I care.

I had been prescribed some medication but hated its side effects. I met several times with a psychologist who, God Bless her, had also lost a son. In the end, after jumping through lots of hoops, I suddenly realized that Josh “would kick my butt” if I crossed over under those circumstances. Those were literally the words in my head. After much confusion and being clueless about how to proceed, I finally accepted that I had to stay and learn what to do with this life-altering Life Experience. I had to have a purpose, find meaning from this loss. With that acceptance, it gradually became clear that I needed to help others and honor Josh’s memory in doing so.

I think it would be safe to say that every parent’s experience is somewhat different. Some of us suppress the feelings, so we don’t have to face them and feel them. That just delays the inevitable, but the reality is that we all handle it a bit differently; that cannot be changed. We do what we can manage when we can manage it. Some parents close the door to the child’s room and maintain it just as it was when their child was alive. Some dispose of all of the child’s belongings as if that child never existed. Probably most fall, as I did, somewhere between those two scenarios. We do what works for us at the time, what feels “right”… meaning, right for us.

After being off work for two weeks, coming home from work one day, I recall seeing Josh’s school bus stopping at the end of our street and thinking, “Oh, I made it home just in time…”. For just a couple of hours, I had forgotten, then felt as if I had crashed into a wall, feeling heavy guilt that it had somehow slipped my mind momentarily. The thoughtful bus driver smiled and waved to me on the way by, further breaking my heart.

Some parents aren’t able to handle their spouse’s apparent happy-go-lucky “I’m OK” attitude. I believe that’s just someone shutting down and burying their feelings in order to make  it through the next minute, the next hour, the next day and beyond.

There is sometimes the side effect of divorce following the loss of a child, which may be related to the disparity with which each parent experiences the tragedy. It is said that sometimes there are already challenges and problems in the marriage and a child’s death seals the couple’s fate. This is truly a time when parents need to stick together and find mutual love, understanding, and compassion to help each other through the coming and continuing challenges. It must be understood that each needs differing levels of support at various times. We each travel this rocky path at our own speed, handling our grief in our own time, in our won way. In addition, many parents are faced with the challenge of discussing this matter with their other children, who need just as much support, if not more, than their parents. At this time, it is crucial to maintain your family routines while still honoring the memory of your loved one.

I had several challenges in that some friends had not heard of Josh’s death, and I found myself having to gently summarize what had happened. I attended a parental bereavement support group for a couple of months, but at the time found it was too difficult for me to repeatedly explain why I was there. We need to be kind to ourselves and take time to recover in our own unique way.

Time and writing helped me recognize my gratitude for knowing Josh, being grateful for the time we did have, and the generous person that God allowed me to know. I found that writing worked well for me as a creative outlet and helped me organize my thoughts as I spoke directly to my son and told him how much I miss him and would continue to miss him far into the future. Journaling, painting, woodworking and other artistic endeavors could work just as well for others. Getting back into your routine does not mean you have forgotten or don’t miss your loved one. You honor their memory by going on.

Here’s an example of one of my “writings”:

Ode to Josh


For more information on my book about Josh, see Taming Josh’s Dragon

Please see this very helpful PDF article by Children’s Cancer Research Fund for additional details and advice:

Here is another supportive website:

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