Scarred Joy is turning a corner, as it were, regarding regular posts. Blog entries, for the most part, will now focus on what society has labelled, “special needs.” I will primarily be referring to families, that is, parents and grandparents, raising children who live with such challenges as autism, cerebral palsy, Down syndrome, etc. A family having experienced the death of a child may also be considered as having special needs.

The edginess and frank content of my posts will remain. We will be dealing with various issues, etc. that come with families living with special needs.  A goal is to raise awareness of the disabilities of our society, as it perceives people with “special needs.” We will also from time to time note the wonderful accomplishments of people with special needs.

A number of people have already encouraged Scarred Joy with this refocus. I’m thankful for such positive vibes I have received. There is a confession I have to make, however, before I go on. I confess I don’t know what to say.

I say this due to the fact I’m not an expert in the area of “special needs.” I am a mere student. While there may be professional type people who are regarded as experts, I’m not one of them. I don’t learn what I may know about “special needs” from books or listening to a professor or instructor who teaches courses on “disabilities” etc. They have their place, of course, but they aren’t the experts who teach me.

Real experts, people who live in what I call the “world of special needs”, teach me. The real experts I refer to are my daughter and her husband as well as their friends who live in the same world. My real experts also include my grandchildren who are labelled as children with “special needs.” Through such people I am given an idea of what living with “special needs” is like.

As I write I am asking myself questions like the following. Is “special needs” the correct term or is it merely acceptable. I mean, who decided to coin the term “special needs” and it becomes part of everyday language?

In my reading I have seen such terms as “retarded” or “mental” or “special ed” or “spastic,” are words of a mean nature today. The more enlightened ones who shun such derogatory terms do not use them. This begs another question, “If I have to use a term other than “special needs,” what do I use? You see I don’t know what to say.

Well, as you read this message you might ask, what does “Scarred Joy” mean? Scarred Joy is a term I came up with, to in some way capture the fact people move forward in their lives in spite of suffering. You may know of similar terms or words for this. I also use this term, Scarred Joy, when I think of families who live with “special needs.”

You don’t have to agree with me but this is how I see it. With “special needs”, there is a constant companion throughout life. This particular constant is what I call, Scarred Joy. Those with “special needs” carry scars throughout life, often caused by other people, that remind them they will always be considered “different”, not “typical,” “not the same” as “normal” people.” In spite of being known and noticed for their “differences,” they, for the most part, carry on with their lives in a Scarred Joy manner.

I say all of this because I don’t know what to say. What I mean is, I don’t know what to say when I write in this blog being dedicated to families with “special needs” as a significant part of their lives. I am open to “special needs families” teaching me as the blog continues. I invite such family members to please follow Scarred Joy. I will cherish your feedback and input into the content of this blog.

You remember the special phone call you received each year from your parents on your birthday. You hold close your father’s favourite pair of slippers. They are the slippers he kept at your place and used when he visited you. You go into your kitchen to do some baking and the recipe is one your mom gave you. You have to sit down and compose yourself. You rearrange the suite in your basement your parents used in their later years. You realize as you clean up the area even their fingerprints left on the furniture have now gone.

The memories we may have of our parents represent a major part of our lives. Their deaths initially take us into uncharted territory. It is a territory full of emotion and change. We now take on a new title of identification, “adult orphan.” Our parents never died before. It may take a while for the shock to subside. One may describe this as feeling numb. We may be devoid of words for a time in coming to grips with this loss. As shock begins to subside it can result in a deep expression of grief that seemed to pass us by at first.

When my father died I didn’t like the thought of him lying in the hospital morgue. A few days after my mother died I thought I heard her calling my name. The grief experienced after the death of parents may be of a profound nature. It is unique. It does not feel like anything else one has experienced. It is final. It cannot be fixed.

Our parents are not coming back. This realization can seem too much for us to process. It can be brutal on our emotions. Days may drag on as if never to end Nights may crush us with loneliness.

In the mercy of God we may begin to sense enough that life will forever be changed. The realization I am an adult orphan did not strike me until the death of my mother. Dad had died a few years before her. My life had taken on a different status. I was no longer someone’s son. It struck me as strange. I asked myself question, like “what do I do now I have no parents?”

My grief drew me to my writing. Words helped me express this path once foreign in my journey through life. I wrote a poem that I included at the beginning of this post. I don’t claim to be a poet. I wrote the words for the sole purpose of giving expression to my grief.

Death comes to us all. Regardless of the unrealistic view many in the western world have of death it is still a part of life. It will not allow us to evade, deny or pretend it does not exist. Death came for our parents and will come for us.

When you consider your own children you may look at them and think to yourself, “Where did the time go? It seems to have flown by.” Now at this juncture of your life you may be reflecting on similar thoughts. “When did my parents become old?” “I still needed them and now they’re gone.” Life is so different now.

You may be in the initial shock of losing your parents. Perhaps it has been a week or two since your last parent died. There are funeral or memorial service or celebration of life details to now put into action. It may be the funeral gathering etc. has past and life goes on as usual for many. Not for you however. You are a grieving daughter or son. You are a mourner. You are still you but someone is missing.

In my experience with grieving people I know some are hard on themselves. They fall into the trap of such things as “stages of grief.” They think there is a certain way one must now act. They listen to the voices of other people who in their ignorance think “you should be over it by now.” Your grief process is unique to you. You will live with it and honour it as you choose.

Perhaps the following questions may help you in your life without your parents. How do you honour your parents now they are physically missing from you through death? What legacy have your parents left you? In what ways do you remind other people of your parents? What did you learn from them about grief and loss? What is your grief journey like right now?

Blessings to you as you now live without your parents. Live on remembering them. Your love for them goes on.

NOTE: When Parents Die: Part One, Estrangement, “Not all adult orphans look back on their relationship with their parents with fondness.”Alan Anderson, https://scarredjoy.ca/, When Parents die Part One: Estrangement, Dec. 6, 2018.

My parents died a number of years ago. My dad died first then a few years later mom died. Her death made me an adult orphan. You may have heard of the term “adult orphan.” I belong to this group. I’m an adult orphan. What does this term mean to you? The fact our parents eventually die may not be an experience people want to confront. Not confronting this fact of life doesn’t change anything. If you have had a longstanding estrangement from your parents it makes reconciliation more challenging.

I realize not all my readers may resonate with this post. It may stir up memories you wish you could forget. Perhaps you didn’t have a close relationship with your parents. Perhaps you were estranged from them. It may be you look at the death of your parents as a rite of passage anddon’t think twice about consequences of this loss

The grief one experiences after the death of parents may be of a profound nature. It may also be a complicated form of grief due to the ongoing disagreement you had with your parents. Not all adult orphans look back on their relationship with their parents with fondness.

Those adult orphans who didn’t resolve disagreements with their parents may have blown it. This may not go down well with you but at least give it thought. At a point in your relationship you had an opportunity to resolve things and you didn’t take advantage of it. The opportunity passed you by. Now with the death of your parents it’s too late.

 Even when it is too late to make amends with your parents you can make peace with yourself. You can own up to your part in the distance you and your parent(s) caused between each other. Most times it is something either of you could have remedied but you just didn’t. You let things go on because of pride or stubbornness or lack of true love. No one made thefirst move toward reconciliation. So sad. Time continued on and your parents passed from the scene.

Reflecting on your dysfunctional relationship with the people who brought you into this world may be a teaching moment for you. You may learn something about yourself. The energy you used in keeping a distance between your parents may now be used to look at yourself. Who do you see? By chance do you see a reflection of your parents as you look at yourself?

Who or what do you see as you reflect on yourself? A few thoughts may be going through your head as you gaze at yourself. “I see a stubborn person.” “I feel a deep sense of loneliness now my parents are gone.”“I recognize times in life where I wanted to make amends but didn’t.” “I’m happy I reconciled with my parents before it was too late. I just wish I had done this sooner. I miss them.”

Dear reader, if your parents are still alive how is your relationship with them going? If time is a healer as some say, have you taken time to resolve disagreements? The clock is ticking. Time waits for no one. Now is the time. Don’t worry about being right, reconcile, as much as you can with your parents. Things may not be perfect but at least be civil and honouring to them.

A famous actor and his son had a falling out that lasted for years. After the father’s death the son was asked if the slate was wiped clean before his father’s death. The son replied, “What slate?” Enough said.

Coming soon: When Parents Die: Part Two—An expression of love and grief.

“Just because I disagree with you, does not mean I hate you. We need to relearn that in society.

In our society today it is not uncommon to hear words like “hate speech” or “fake news” or words like “homophobic” or recently invented words like, “Islamophobic” and all kinds of terms that distance people from each other. It seems to be acceptable to throw such terms around whenever people disagree.

Terms like the above by nature may instill fear in some people. Here in Canada even government leaders use such terms and a few more. Those one might expect to know better, like leaders, would serve people more if they practiced civil language.

All of the above terms and many others represent what Scarred Joy considers to be the “dark side” of our society. This “dark side” is becoming all too common these days.

This “dark side” includes the cynical and intellectually violent attitudes many people exhibit towards those they disagree with. A posting on Facebook reads, “Just because I disagree with you, does not mean I hate you. We need to relearn that in society.” There is wisdom and truth in this statement. It speaks to me in its simple message.

The statement from Facebook reminds me of a verse in the Bible known as the “Golden Rule.” It says, “So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets (Mathew 7:12).”

Both the simple Facebook words and the Golden Rule challenge me to review my attitude regarding my role in contemporary society. I know I must restrain myself from commenting negatively about controversial issues. One of the issues that can cause me to be upset is the government my country of Canada is subjected to today. It is easy for me to say how much I disagree with most of what the government wants to do and it’s leader in particular. This is showing an example of my own dark side.

You see I’m aware of my dark side. It is often my default status when reacting to the controversial issues impacting western culture. I can sit back and criticize the decisions of others that I despise.

I have to address how I might be able to live out my life in this present day in a way that reflects the faith I live by. If I do not then I am one who lives in the dark side.

Now, let me make something clear. My faith as a Christian does not mean I accept all the influences or beliefs of the culture in which I live. It does mean that I must live in a way that reflects the One I serve. I cannot say this is an easy way to live in this day and age.

My dark side cannot and must not lead me through life. I do not have to follow the people with loud voices and aggressive responses to matters prominent today. I also need not fear those who seem to lack the capacity to show reason in their decisions.

Belief in freedom of speech does not mean I have to agree with everyone’s opinions. I do, however, respect the opinions of others without agreeing. I admit too this respect is sometimes not my first response.

I remember a few months ago when interacting with someone of social media. The woman remarking on some issue believed she has a right to judge another person’s opinion or beliefs if they didn’t agree with her own. I remarked this sounded quite odd in a democratic society. I tried to encourage her by saying the beauty of democracy is being able to disagree with each other without hating. She concluded by saying I should watch what I say or something could happen to me. She didn’t elaborate further and I never heard from her again. I pray for her.

I guess these days I could have reported this woman to the social media police or something. On the other hand, she blessed me with not hearing from her again. The reality of today assures me this lady is not alone in her imbalanced views of interacting with the beliefs of other people.

Her sorrowful view of divergent opinions reminded me “Just because I disagree with you, does not mean I hate you…”

My dear friends, whether you agree with me or not, we have our lives to live out. As an Orthodox Christian I choose to live a life of peace. This is even more reason to love and treat other people in the way I would like them to love and treat me.

Let us all beware of our dark side and live in peace as much as we can.

“A humble man is never rushed, hasty, or agitated. At all times he remains calm.”

Saint Isaac the Syrian

Anticipatory Grief

A couple months ago I posted on my Facebook page for people to send me suggestions for my Scarred Joy blog. I received a great one from a writer friend, Sally Meadows. Here is what Sally had to say.

“Having experienced it myself a couple of years ago, I would like to see a blog about “anticipatory grief”–when you start grieving about something/someone sometimes long before it might happen. You just know it down in your soul that something/someone is going to end/leave…it could be a relationship, a job you love, or perhaps someone is dying. Have you had experience with that, Alan?”

In this post I will give a definition of “anticipatory grief,” unpack it a bit, then offer a short story to illustrate this grief.

Here is a definition of anticipatory grief from the writing one of the main people I turn to as a resource for issues regarding grief.

“Anticipatory grief” is a term that referred to the grief felt about someone with a life-limiting illness; friends, family, and caregivers felt it in anticipation of an eventual death. We now understand anticipatory grief or what Dr. Rando, a prominent grief therapist and author, prefers—anticipatory mourning—as a reaction to all the losses experienced in an illness.” (“Grief, Loss, and Caregiving”, Kenneth Doka, page 200, Caregiving and Loss: Family Needs, Professional Responses, Edited by Ken Doka and Joyce D. Davidson, Hospice Foundation of America, 2001.)

Notice the progressive step in defining anticipatory grief. It has been used to refer to grief associated with feelings family, friends, etc. experience related to a loved one’s eventual death. The definition has been expanded to where it includes grief expressed over all the different losses a person experiences in the context of an illness, not just the grief due to impending death.

In “anticipatory grief” we mourn plans that will never come to pass. Grieving that this past Christmas was the last one to be celebrated with your loved one. There may be a loss of living “at home” and now being confined to a care facility. A primary caregiver or family members may be trying to imagine what life will be like after the death of their loved one.

Some people may experience anticipatory grief on a deeper level than the death of their loved one. Such things as when our ill loved one loses the ability to speak. This may be accompanied with a number of issues adding to one’s suffering. The sick person and family members may be frustrated as to how to now communicate with each other. The possibilities of having meaningful conversations with the loved one are now remote.

Family members may grieve times together that will never be. The holidays they wanted to plan, the special celebrations they wanted to enjoy, die with the loved one. Vacations will never be the same without the loved one. This is what Dr. Ken Doka refers to as a loss of the “assumptive world” (Doka, page 200). The life together they hoped for will never be realized. All of one’s life is altered with the death.

A Story of Jim and June (not their real names): An Illustration of Anticipatory Grief

Jim and June were looking forward to putting their plans in action as soon as he retired. For the past five years they had planned a road trip in their RV to drive all over Canada and the United States. It would be a trip of a lifetime. Jim worked a couple years longer than he intended but now the time had come. Working longer allowed them to save enough money to pay for their RV in cash.

After retirement they were both excited at the prospect of putting their travel plans into action! The RV was insured and they had mapped out the route for their trip. They gave copies of their plans to their children so the kids could know estimations as to when they would be at certain places on their trip.

It was soon after Jim’s retirement that June began to not be feeling well. After some coaxing Jim convinced her to make a doctor appointment. He accompanied her to see the doc and it was good he did. After his initial assessment the doctor referred June to an oncologist. The result of the oncologist’s examination was conclusive. June had pancreatic cancer. To make matters worse the cancer was spreading to the point the oncologist was not hopeful June would recover.

As time progressed so did the cancer. The plans June and Jim had for travelling gave way to doctor appointments. In fact, they decided to only have short trips on the occasional weekend. June couldn’t face being away from home for too long. As she became weaker from cancer treatments as well as the illness Jim and June decided to sell their RV. The dream of travelling around North America was shattered.

The couple would have quiet moments at home where they would talk about their lives together. The cancer was slowing June down to the point that even short walks with Jim around their neighbourhood were too much. She bemoaned the reality that she was dying.

Jim recognized he was experiencing a profound sense of grief at the prospect of losing June. It would keep him awake at night. He would have periods during the day that he would cry at the thought of life without June. He may be doing something like puttering in their back yard but his thoughts were consumed by June’s illness. One time, he went into his workshop just to be alone as he cried bitter tears. He didn’t know if he was crying because of June’s cancer or his own grief. Life wasn’t the same anymore and he dreaded what it would be like after June died.

Anticipatory grief is real and common when things take a major turn in life. It is something you may have experienced. If not, you will.

Perhaps you are experiencing anticipatory grief right now. You don’t have to be alone in this part of your grief journey. Please feel free to share some of your thoughts with me if you like.

Love your life as much as you can. Put aside the petty things that really don’t matter. Be happy rather than always wanting to be right. Remember to never take life for granted.

Until next time, bless you all.

• “What do you think of your God now? If He loves us why would He take my son from me? Tell me that!”
• “She was just starting out in life. She was one of the good kids, now she’s gone. It just isn’t fair.”
• “He’s been lingering for days. He doesn’t eat or drink. He doesn’t talk to us anymore. Why can’t God just let him go?”
• “She was our baby. We loved her and still do. She lived for only a day. Even that single day was uncomfortable for her. She died in her mom’s arms.”

Experiences in life may cause a person to cry out about the unfairness of it all. The statements that opened this post all speak about the death of loved ones. I will narrow this post down to “unfairness” in the context of the death of a loved one.

Dear readers, we all face difficult times. They seem more challenging when we are trying to find answers that seem elusive. This accentuates our thoughts of unfairness. It seems so unjust. This can also lead to despair. Psychologist Viktor Frankl noted, “Despair is suffering without meaning.” Despair is a terrible place in life to be.

From the years I have devoted to coming alongside people I come away with this belief. There is always some meaning in our suffering. Without meaning we become lost in despair. I have encountered countless people who grieve the death of a loved one. There have been a number who have cried about the “unfairness” of such a loss.

When one is going through a heartbreaking experience in life it can lead to a conclusion that life is unfair. This sense of unfairness is compounded when one thing after the other kicks us in the teeth, so to speak. Many people begin to fall into the trap of self-defeat. They are so tired of feeling sad, for instance, all they can see or feel is despair or that they just can’t go on.

Finding meaning in our grief or suffering helps in establishing our purpose in life. Hang on to that statement because it is true. It may not, however, be an easy endeavour or discovery. It may take a change in one’s perspective regarding “unfairness.”

A Change In Perspective

The following thought may give you opportunity to reflect on your situation from a different perspective. Perhaps you are unfair to your life. This point isn’t meant to minimize your suffering or difficult time in life. Life indeed can confront us with all sorts of experiences that are cringe worthy.

Let me repeat the point I have mentioned then I will unpack what I mean. “Perhaps you are unfair to your life.” Right now, this very second, life may be folding in on you. You are in so much pain that it is taking all your energy. You have nothing left. Your mind bombards your heart with thoughts like, what’s the point? You may be teetering on the point of despair. You thought the same thing yesterday and the day before that. Your pain over the death of your loved one has gone on for years now.

In spite of these negative overwhelming thoughts that have gone on for a long time you still open your eyes to another day. Isn’t that amazing? You really haven’t given up. You may see life through a filter of pain but you still get up. This simple ordinary experience is one of hope. Deep down inside you and covered by the crap of seeming despair is hope. Hope like meaning leads to purpose.

Be fair to yourself. Give yourself credit for being strong. Turn the energy it takes to fill your mind with doubts and unfairness into moving forward, seeing the beauty of life and the beauty of you. Yes, the beauty of who you are and your purpose in life.

You are amazing and strong. You are more than the limitations of your experience or situation. Think of it, you have nowhere else to turn but up. Look up toward goals you once had in life. Resurrect these goals. They are part of who you are.

Turn from the whole idea of “unfairness” and allow yourself to heal from this thought that has beat you down. In unfairness you are expressing your woundedness. In being fair to your life you are saying, “I want to heal myself.” Reach out to others who love you and persevere together. Allow them to walk with you on your road to regaining your strength and hope.

Perhaps you grieve the death of one you loved more than your own life. To you this death has culminated in your view that all of life is unfair. This unfairness has clouded your ability to see any meaning in life. To use the term used earlier on turn from being “unfair to your life” and live for that loved one so missed.

Think of how you envisioned life with that person. Think of the deep joy that made your heart strong with love. You have not lost that love. It has been clouded over by the dense fog of unfairness you have come to nurture. Find that love again and live it.

You cannot undo the death of your loved one. It has happened. You can, however, feel love again. You can live in love again. Even in living without your loved one you can still love your life. You can live for your loved one. It can be done and you can make it happen. Yes, you can!

The road ahead to healing may indeed be a long one but it will be worth it. Leave unfairness in the dust. Push beyond the mountain of doubt you have built and reach the beauty of your life you know is inside. Yes, it can be done! You can do it.

Scarred Joy hopes at least some of what has been said rings true with you. It is, however, up to you what you do with your life. Accept the fact you are a gift to life. Now, what are you going to do with your gift?

If this post has been speaking to you please comment and honor me by informing me how your life is changing.