Grief is an unavoidable fact of life, a rite of passage that everyone will go through after experiencing a major loss. We somehow learn to live with this most unwelcome guest. I used to think for a long time that grief was limited to our reactions/experiences when someone close to us passes away. For most of us, the death of a loved one is indeed the ultimate grief, but there are other situations in life that can also mimic the same emotional pain. For example, the loss of dreams that were not realized, the end of a marriage, an unexpected health crisis and raising a disabled son or daughter all qualify.

Psychiatrist Elisabeth Kubler-Ross described the 5 stages of grief in her book “On Death and Dying”: denial, anger, bargaining, depression and acceptance for individuals who were diagnosed with a terminal illness. The stages provide insight as to how human beings generally react to losses in life, though I would imagine not everyone who is grief stricken for whatever reason will necessarily go through each stage in the same way . There is also no timeline, no order or expiration for grief. I don’t think we ever “get over” grief, rather, we learn to “live with it”, one day, sometimes one hour, at a time.

As the Mom of a disabled son, I can honestly say that I still experience some form of grief on a daily basis. Granted, my grief is generally not as intense as it first was when Brian was first born, but on certain days I can still be triggered by a reminder of a hope or milestone that I had for my son that will never come to fruition. That grief can be just as raw and gut-wrenching today as my grief from 21 years ago. The difference is I am finally feeling my grief, unlike the early days, when I was denying it.

We were in “survival mode” during those early days, especially with the barrage of Brian’s medical issues that required our attention. There was really no time to grieve and actually for the short term, that was a good thing. Being emotionally detached from our overwhelming situation allowed us to make decisions and get things done that were necessary for Brian’s survival. People said we were so strong: I didn’t give it too much thought at the time, but inevitably it all came to an ugly head one cold January afternoon in the parking lot of Morristown Memorial Hospital.

It was a cold, cloudy day, the kind of weather that discouraged one from going outside. I really didn’t want to, but Brian had an appointment at the Child Developmental Center with a neuro developmental pediatrician. i had waited 3 months for this appointment, so I couldn’t cancel it. Part of my discouragement was a sharp foreboding that I was going to hear things that were difficult and life-changing. Brian was 2 years old at the time and his track of development over several months was so different than the other toddlers in his early intervention program that I knew something was wrong. It was hard to make that initial phone call, fill out the required paperwork and finally make the appointment. The day had finally arrived.

My instincts were ultimately correct. When the doctor examined and observed Brian for 90 minutes, her body language, facial expressions and copious notes told me everything I needed to know. Our world was about to come crashing down and there wasn’t anything we could do about it. Brian was officially diagnosed with autism that day- the relief that now we knew why certain behaviors and specific challenges were happening would happen later. At that particular moment in time, I felt suffocated, in disbelief what I just heard ( even though I knew in my heart it was true) and the intense urge to leave the doctors office as soon as possible, which we did.

I broke down in the car and literally experienced all 5 stages of grief in an hour. I don’t think I ever cried that much, in fact, I didn’t think it was humanly possible to cry so many tears. I was in denial of what I just heard the doctor say. I was angry at God for this additional diagnosis and begged Him to do something about it. I bargained with Him for a miraculous healing of Brian. Needless to say I was very depressed, but as I eventually stopped crying and turned on the car ignition to drive home, the very slow process of eventual acceptance had began as I slowly pulled out of the hospital parking lot.

Fast forward to today: I am still grieving Brian’s dual diagnosis periodically. The sadness, reminders of what could have been, the daily struggles and the dreams and hopes we had for him, are just as real as they were in 2005, albeit less intense, at least most of the time. I have come to accept my grief as an inevitable part of living, the high price of love, as opposed to resisting it. In the end I have learned that to fight grief is futile and my resistance has prevented me from fully living my life at times. I don’t like grief, I will always resist it and it hurts- a lot! But I want to still experience joy while I am still living, despite the things I cannot change.

The 5 Stages of Grief are my blueprint for both the future losses that will come into my life and those losses that are already a part of my daily existence. I have permission to feel, and, actually, I must feel in order to move forward- there is no escape from this fact. Past experience has given me the confidence and assurance that I will get through my grief once again when the trials start and there is no right way to do it or deadline. Denial, anger, bargaining, depression are the eventual bridges to acceptance and peace whenever I’m ready to cross them. I am learning to accept the things I cannot change, and instead changing what I actually can: myself, one day at a time…

Until next time, thanks for reading! 😊