Summary:
This story describes the peaceful death of the author´s son after a lengthy life threatening illness, and offers a metaphysical view of life, death and disability. It concludes with a description of several unique practices and rituals to help with the grieving process.

Details or Sample:
This story begins on the first day of the rest of my life, the day my 16 year-old son Danny died after seven years of struggling with a degenerative metabolic disorder. I was his sole caregiver and he was my most precious gift and my greatest teacher.

Although there are days when I dissolve into tears if I happen upon some object of his -- a stray sock discovered while vacuuming under a bed, or a package of catheters long forgotten in a bathroom cabinet -- on most days I’m at peace. My unusual perspective on death has made my grieving process different than it is for most parents. Rather than curse my fate, I’ve embraced it with open arms, grateful for the opportunity to grow in ways I never imagined, and to be permanently, magnificently transformed by the profound power of this experience.

Details about hospital stays, medications and caregiver burnout don’t need to be addressed here, because anyone who’s ever cared for a dying person is already an expert in those things. I would like to address instead, the idea that each of us has a particular intention for this lifetime, and despite our feeble attempts to fight and control the way things are, the soul’s intention always prevails. I realized at one point during the last few months of Danny’s life, in the midst of emergency room visits and other interventions, that it had become time for me to completely relinquish control and honor his soul’s intention by allowing him to lead the way. This journey was full of gratitude and acceptance, and both of us came to embrace his death with joy and relief.

I spent Danny’s last few weeks reminiscing with him about our life together and the beautiful times we’d shared, and leafing through our family photo albums with him (he had a hard time focusing on the photos because as I learned later, his eyes were drying out from dehydration and he could not see very well). I also spent a lot of time lying next to him in his bed, whispering to him about the beauty of “heaven” as I perceive it.

Regardless of your religious perspective, you probably have some sort of vision about a world after death, and it’s important to share that vision with your child. If you haven’t already done so, please consider reading some of the many brilliant books that exist on the topic of the afterlife (I’ve recommended some at the end of this article, including those that focus specifically on the perspective of children who have visited other realms in dreams or in near-death experiences).

Throughout Danny’s life I’d spoken to him about reincarnation, angels, guides and the journey of the soul. I told him that we meet up with members of our soul family after leaving our physical bodies and moving into higher realms. I told him that he would be met by friends and loved ones he’d forgotten in this incarnation, but would remember with great love the instant he saw them. I also told him that I would be there too, because we’re capable of vibrating in more than one dimension simultaneously, and though I’d still be in a physical body on earth, we would be together on the other side at the same time.

It’s my own personal hybrid theology, which combines ingredients from Buddhism, ancient earth-based religions and a sprinkling of various New Age teachings. Every person has a unique idea about why we’re here and what happens when we die, and your child probably has his or her own version as well. I can’t emphasize strongly enough how important it is to talk about this.

In the days leading up to Danny’s death a stream of well-meaning friends stopped by wanting to say their goodbyes to Danny and offer whatever help they could. I learned quickly to not only accept their help, but to give them specific work assignments.

Here’s a perfect example. A few days before Danny died, my friend Richard stopped by. Danny was asleep in his room and I was working at my desk. Richard and I chatted briefly about work and computers, and Richard told me that his printer had run out of ink that morning and he’d just come back from Staples where he’d bought a new ink cartridge. The moment he said that I realized that I needed a new cartridge too, but there was no way I had the presence of mind to deal with a trip to an office supply store while my child was dying in the next room. He graciously offered to go back to Staples to get one for me, and I gratefully accepted.

I learned from this experience that if someone says, “what can I do to help you?” you must give them very specific answers, such as “clean my bathroom.” They’ll be more than happy to do whatever you ask. It not only gets the job done, it makes them feel better.

Another thing I learned with the help of my dear friend Lee Green, the bereavement specialist from our hospice, is that when a person is in the process of dying, they are concentrating intensely on the task at hand. As much as we want to touch them, talk to them and surround them with friends and loved ones, it’s not always the best choice. Every voice, every touch, every time the doorbell rings or the dog barks or the television is turned on, the dying person is drawn back into the body and back to the earth. Lee said it’s like drifting off to a delicious, much-needed sleep, but being jarred awake repeatedly by annoying interruptions. The greatest gift we can give them at this point is space, which is, naturally, the one thing most difficult for us to give.

Danny died at 1 p.m. on a Friday afternoon. All that morning and through the previous night, he’d slept deeply, his lungs emitting a gurgling sound with each breath. When Jim, our hospice nurse, came for his morning visit, he declared that Danny was in the process of "separating" and was likely unaware of anything going on around him. Jim said Danny would probably live no more than 24 hours.

All I could think about was wanting to spend those last precious hours as close to Danny as possible, touching his chest and feeling the final beats of his heart, and laying my face on the pillow next to his face to feel the last of his warm breaths on my cheek.

But it was not to be. Danny had other plans.

After Jim left I scrambled around taking care of a million little tasks, frantically trying to get things done so I could spend time with Danny. The phone never stopped ringing, people kept coming to the door, and there were a million other distractions. I even used some of this time to finish up some work for a client, because I knew I wouldn’t be able to work during the coming weeks.

Finally things settled down and I went in to be with Danny.

“Hi baby, I’m here now,” I said. “I’m sorry I was so busy all morning, but I’m here now.”

I stroked his hair, moistened his lips with a glycerin swab and thought about putting some music on, but changed my mind, thinking that he was probably already hearing the music of the spheres.

And that´s when I realized for the first time since the day before that I was not hearing the gurgling sound. I must have been there tending to him for a full minute before I noticed that he wasn´t breathing. We figured out later that it had happened only in the last five minutes, as we retraced our steps leading up to that moment.

Danny did what many people do... he waited until I was busy elsewhere to finalize his transition. As I´ve been taught by many who are more experienced than I am in this, my presence close to him would have held him here. Although I knew this intellectually, I felt terrible that I didn´t spend those last hours by his side. I’d apparently decided that it was more important to answer the phone and the door and to finish up some work before the weekend. I said to my friend Edith later that night, "this wasn´t the way I wanted it to be." And she said, "It was the way he wanted it to be."

My husband EJ, my daughter Danika and I lay on the bed with Danny’s body and held him for a long time, touching his fingers, his hair, his cheeks, and marveling at his beauty and the intense love and awareness that filled the room. Danny had a pierced ear (he was a very cool dude) and had been wearing a little silver hoop in it since age 12. I took the earring out and put it in Danika’s ear. I also removed his MedicAlert bracelet and put it on her wrist. She wears both to this day.

About an hour later Amy and Lisa, his two aides (I hesitate to call them aides… they are part of the family and are more like sisters) showed up, and the four of us women, Amy, Lisa, Danika and I, spent the rest of the time cuddling with Danny, petting him, talking, laughing and crying. At one point one of us was sitting on each corner of his bed, each caressing a hand or a foot, and it was quite a sight, the four of us dividing Danny´s extremities like that. None of us could stop touching him. And it was funny, because it looked like a typical day in Danny´s life, with him lying on his bed surrounded by adoring females. The only difference was that Sponge Bob wasn´t on the TV and Danny wasn´t in his body.

We kept him there for five hours before calling the funeral home to take his body away. We’d arranged to donate his brain tissue to research, and just before the attendants pulled the blanket up over his face, I held his head in my hands and said a prayer that his brain would help others and find a cure for this dreadful disease.

We stood shell-shocked in the front yard and watched them drive away. It was about 6 pm, and we spent the rest of the evening sitting in the living room drinking wine and telling stories about Danny, so bonded by this experience and so comforted by each other´s presence that nobody wanted to leave the room. There was food in the kitchen but nobody wanted to separate from the group long enough to go in there to get some. Edith showed up a bit later and joined our little circle, and we stayed like this until 11 pm. Nobody wanted to go home.

THE IMPORTANCE OF RITUAL

The next few days were probably typical of what people do when someone dies, though I can’t say for sure because Danny was the first person close to me who’d ever died.

My mother and my best friend Shelley had flown in to help me through this next stage, and it was during the process of going through Danny’s clothes, dealing with the funeral home and planning the memorial service that I realized how many imaginative rituals I’d spontaneously come up with, and how valuable they were in helping me -- and everyone else -- deal with the shock and grief of losing Danny. Without realizing it, I’d been creating rituals for years in preparation for this, and during the days leading up to his death and the days following it, I’d continued to create them. It’s only in retrospect that I recognized how vitally important they were.

Rather than go into a long narrative about how each of these rituals came to be, I’m going to simply list them here in no particular order, with a brief description. They are yours to keep, to duplicate, to improve upon and to share with others.

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