Saturday, January 28, 2017

Silver Award Project

For almost 50 hours, close to a year, Becca and her girl scout friends have been working on their silver project...Disability Awareness Day. Their moto is equality on the inside empathy on the outside. They had 6 stations on different disabilities....physical, learning, behavioral, speech, hearing and vision. The girls worked together to plan most of the event but when it came to their individual stations they did it all on their own. They became experts on their disability, answering all kinds of questions. There were approximately 30 Girl Scouts there ranging from 2nd to 6th grade, Becca and her friends did a great job leading the girls in the activities they had planned. They still have to do another run through of their project in order to video it for sustainability. 
Brian and I are beyond proud of all the girls but especially Becca for continuing to work on the project after Ian passed. He is the main reason they chose their project and are finishing it in his memory. Way to go girls!

Wednesday, January 25, 2017

Grief Stinks...And That is Saying It Nicely

There are plenty of books, websites, articles, etc regarding grief. The definition of grief, according to Web MD is: "Grief is a natural response to a loss of something or someone such as a death of a family member or friend, loss of a pet, divorce, retirement, and many other situations. Every person responds to loss differently." Also according to Web MD and other sources there are 5 stages of grief: denial, anger, bargaining, depression and acceptance.
  • Denial: When you first learn of a loss, it's normal to think, "This isn't happening." You may feel shocked or numb. This is a temporary way to deal with the rush of overwhelming emotion. It's a defense mechanism. Denial has come and gone for me over the years, months, weeks, days, and minutes...There have been times when I don't believe Ian is gone. I come home from work and look to where his bed used to be waiting to hear the cluck for me to say hi. I get home from taking Becca to school in the morning, go upstairs to go into his room to say good morning and find out from his night nurse how he slept. Then reality comes back and I realize his bed is not there and his room is empty. 
  • Anger: As reality sets in, you're faced with the pain of your loss. You may feel frustrated and helpless. These feelings later turn into anger. You might direct it toward other people, a higher power, or life in general. To be angry with a loved one who died and left you alone is natural, too. Over the years, anger has come and gone. Up until last night, I thought anger was gone for me, however, due to some recent situations, it's back. I spent some time crying, while yelling at the higher power that I HATE him. I am hoping the anger stage, I am currently in, doesn't stick around long. I know in my mind being angry doesn't get me anywhere. This is a time when the mind and the heart don't want to agree with each other. 
  • Bargaining: During this stage, you dwell on what you could've done to prevent the loss. Common thoughts are "If only..." and "What if..." You man also try to strike a deal with a higher power. I think I have skipped this step. I have known that bargaining isn't and wouldn't get me any place. Once we learned Ian had VRK1 and the prognosis was grave, there were no "If only" or "What if". I knew it would not change so wasting time bargaining wasn't in my plan.
  • Depression: Sadness sets in as you begin to understand the loss and its effect on your life. Signs of depression include crying, sleep issues, and a decreased appetite. You may feel overwhelmed, regretful and lonely. Depression comes and goes for me. Over the years, I have struggled with depression. For me I feel anticipatory grief has played into my depression. The depression comes in different ways...crying, sadness, I wish the decreased appetite, staying in bed, not wanting to go out with others...all different ways. Sometimes, I am aware when it hits and try my best to not let it get away...I think that is all I can do.
  • Acceptance: In this final stage of grief, you accept the reality of your loss. It can't be changed. Although you still feel sad, you're able to start moving forward with your life. I think this comes and goes as well for me. Years ago, I accepted Ian was going to pass. We didn't know when or how but we knew that VRK1 would physically take him from us. Just as in the denial stage, there are times I come home from taking Becca to school in the morning and don't think about going to check on him and see how is night was. There are times I have started moving forward with my life, I get up in the morning, go to work, go to the JCC to exercise, go out with friends, Brian, Becca and I go out there are times I have started moving forward. But I also know I have a long way to go. 

Every person goes through these phases in his or her own way. You may go back and forth between them, or skip one or more stages altogether. Reminders of your loss, like the anniversary of a death or a familiar song, can trigger the return of grief. Only 21 short weeks ago, we lost our sweet little man...only 21 long weeks ago we lost our sweet little man. From speaking with others who have lost a child, this is a life long journey, grief will come and go as the years come and go. Facebook brings up a memory and a smile comes to my face, I know there will be times when a memory brought up brings tears to my eyes, maybe it will bring both a smile and tears. This week, the loss of a friends husband, has brought back memories and the grief has gotten worse. Ian and Bernie are together, playing and having a great time. They are looking out for each other. Maybe they are playing catch together, maybe Bernie is teaching Ian some of Avi's favorite games or maybe Ian is making Bernie watch a spiderman movie with him. Regardless of what they are doing, I believe they are doing it together. 
Time will come and go and so will my grief in all the different stages...just one minute, day, week, month and year at a time. 

Tuesday, January 17, 2017

12 Things Harry Potter Taught Me About Grief

An article from

Children grieve family members they can't remember or never met.
Harry's parents died when he was a baby, before he was old enough to really remember them. Harry's grief for his parents, and his relationship with them, is a theme throughout the entire series. It's evident that Harry experiences an ongoing sense of loss because he never had his parents in his life. Not having known his parents doesn't diminish his grief.

Relationships continue even after a person dies.
Harry's relationship with his deceased parents continues throughout the series and this relationship is portrayed as normal and healthy. Harry learns about his parents through the memories of those who knew them and we see how his understanding of them changes as he learns for about them and as he himself ages. I'm not sure if JK Rowling was aware of the Continuing Bonds grief theory when she wrote the books, but Harry's ongoing and evolving relationship with his parent's memory (despite never having know them) perfectly embodies the ongoing connection many children maintain with deceased parents. This theme is reinforced later in the series with other loses Harry experiences, like Sirius and Dumbeldore.

Maintaining a relationship with those who have died can be wonderful and healthy, but it is important to also keep living.
In the very first book in the series, Harry Potter and The Sorcerer's Stone, eleven year old Harry discovers a mirror that shows him his deepest desires. When Harry looks in the mirror he sees his parents and other family members who have died. After that Harry becomes just a wee-bit obsessed and he visits the mirror regularly. As a reader there is a sense that the mirror is appealing but dangerous, sucking Harry into the hope for the reality he so desperately wants but that simply cannot exist. When Dumbledore realizes what Harry is doing he tells Harry that, "It does not do to dwell on dreams and forget to live, remember that." It is not until many books later that we learn Dumbledore understood Harry's grief and the pull of the mirror all too well when it's revealed that Dumbledore lost his entire family very early in life, and his own deepest desire was seeing his family alive and safe.

Grief can make even the most meaningful things in life feel empty and meaningless.
After meeting and building a relationship with his godfather, Sirius Black, Sirius dies and Harry is left to grieve another devastating loss. In the wake of this loss, a moment arises when Rowling writes, "He would have been so interested to know all this a few months ago, and now it was meaningless compared to the gaping chasm inside him that was the loss of Sirius, none of it mattered." In another instance, when Harry is in grave danger, Rowling describes Harry's apathy, "Sitting here on the edge of the lake, with the terrible weight of grief dragging at him, with the loss of Sirius so raw and fresh inside, he could not muster any great sense of fear." This is a feeling all too familiar to someone who has experiences a loss, but one that few children's authors have been willing or able to depict.

Sometimes family members are not the best source of grief support/support in general. 
After Harry's parents die he is placed in the care of his aunt and uncle who are...pretty terrible. Harry's aunt and uncle treat him horribly and have little sympathy for his grief. They lie to him about how his parents died and don't let him talk about or ask about his parents. It is not until Harry ends up at Hogwarts that he finds a community that is supportive of his grief and encouraging of developing a closer relationship with the memory of his parents.

You can grieve someone who is still alive.
Neville Longbottom is a classmate of Harry's at Hogwarts. In the forth Harry Potter book Harry learns Neville was raised by his grandmother because his parents were tortured into insanity by evil Death Eaters. Though there is much to Neville's role in the books and his unique relationship with Harry, it is here that Dumbledore helps Harry understand that both he and Neville grieve the tragic loss of parents, though Neville's parents are still living.

People who have experienced devastating losses often see the world in a way that is different than those who have not.
In Harry Potter this abstract concept plays our in a very concrete way. In Book 5 Harry sees something known as a Thestral, which is a dark, winged horse. Harry realizes that not everyone can see Thestrals and ultimately learns that 'The only people who can see Thestrals', she [Hermoine] said, 'are people who have seen death.' We learn that many Hogwarts students have not seen death, and therefore cannot see the misunderstood animals. Harry learns that he, Neville, Luna (and an unidentified member of the Slytherin house) can also see them. Though many fear them and see them as bad luck, Hagrid explains to the students that, "they're dead cleaver an' useful".

Life isn't fair and anyone can die.
You have to hand it to Rowling, she didn't create a sugar coated world for her readers. She didn't give us the happy endings we wanted, especially when killing off characters like Sirius and Dumbledore. Harry already lost both his parents as a baby, it just seems mean and unfair that these surrogate parents should have to die too! But even in the fantasy world of Hogwarts, we see the reality of life and death. People die--good people, wonderful people, important people--and it isn't fair, but it's true.

We grieve four-legged and feathered friends.
Harry Potter's beloved pet is Hedwig, an owl who first comes to Harry before he learns he is a wizard, when he is living miserably with his aunt and uncle. Though they don't exactly have an Old-Yeller style bond, the death of Hedwig is devastating. In an interview, JK Rowling once described this death as representing a loss of security for Harry, and also as marking the end of his childhood. If this loss crushed you, please accept JK Rowling's apology. In that same interview, she said she was sorry and knew the death upset a lot of people!

Learning things we didn't know about someone who died is....complicated.
Dumbledore is Harry's mentor and father-figure. He was also (literally) about 150 year old so, understandably, there is much Harry didn't know or understand about him. Needless to say, this is also often true about children and their parents or other adults. Throughout the series, Harry struggles with rumors that he hears about Dumbledore and he tries to make sense of things by piecing together what he knows with the things he discovers. As a reader we feel this lesson deeply. We, like Harry, have put a lot of trust and faith in Dumbledore throughout the series and it is confusing and unsettling when there are things about Dumbledore we don't know or understand. However, we learn as the series evolves that Dumbledore had his reason for being mysterious and there were many secrets that Dumbledore had wanted Harry to learn, but not until he was ready to understand them.

Depression can be soul-sucking and also difficult to explain.
JK Rowlings has been open about the ways in which experiencing both depression and grief have influenced the Harry Potter books. For example, the dementors "...are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness our of the air around them....Get too near a Dementor and every good feeling, every happy memory will be sucked our of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life." Rowling has shared on numerous occasions that her experiences with depression was the inspiration for the dementors. This makes sense when you parallel Rowling's remarks about her own depression. "It's so difficult to describe depression to someone who's never been there, because it's not sadness. I know sadness. Sadness is to cry and to feel. But it's that cold absence of feeling -- that really hollowed-out feeling."

The people we love are always with us, and that provides us strength.
There are so many Harry Potter moments that one can't help but see as metaphors for grief. Near the end of the series, though, Harry believes he is about to go to his death. At this moment the resurrection stone brings forth the ghost-like presence of his parents and other loved ones. His mother tells him they have been with him all along and when Harry asks them to stay with him, his mom confirms to him they will always be with him. I know I know, it might sound a little cheesey, but at a moment when Harry felt so utterly alone, this experience/reminder provided a palpable comfort and strength. 

Tuesday, January 10, 2017

A Few Passages From Other Bereaved Parents

A few weeks ago, I was having a particularly hard day. One of the benefits of working in a synagogue is always having our Rabbi near to chat with. We did chat for a few minutes that day but he also gave me a book to look through. It dealt with loss and one of the chapters was on the loss of a child. The following 3 passages struck me...please keep in mind they are directly from the book therefore names of the loved ones not mine but the authors. 

We said goodbye. But to anyone who eve knew him, he is still alive. I do not mean merely that he lives in both of us or in the trees at Deerfield or in anything he touched truly, but that influence, the impact, or a heroic personality continues to exert itself long after mortal bonds are snapped. Johnny transmits permanently something of what he was, since the fabric of the universe is continuous and eternal...
by John Gunther

    I wish we had loved Johnny more when he was alive. Of course we loved Johnny very much. Johnny knew that. Everybody knew it. Loving Johnny more. What does that mean? What can that mean now?
    Parents all over the earth who lost sons in the war have felt this kind of question, and sought an answer.
    To me, it means loving life more, being more aware of life, of one's fellow human beings of the earth.
    It means obliterating, in a curious but real way, the ideas of evil and hate and the enemy, and transmuting them, with the alchemy of suffering, into ideas of clarity and charity.
    It means caring more and more about other people, at home and abroad, all over the earth. It means caring more about God.
    I hope we can love Johnny more and more till we, too, die, and leave behind us, as he did the love of love, the love of life.
by Frances Gunther

It is very sad to lose your child just when he was beginning to bind himself to you, and I don't know that it is much consolation to reflect that the longer he had wound himself up in your heartstrings, the worse the tear would have been, which seems to have been inevitable sooner or later. One does not weigh and measure these things while grief is fresh, and in my experience a deep plunge into the waters or sorrow is he hopefulest way of getting through them in one's daily road of life again. No one can help another very much in these crises of life; but love and sympathy count for something.
by Thomas Huxley


The last "medical" equipment is gone....bittersweet and mixed emotions....the van is gone.

Thursday, January 5, 2017

Chai - 18 Weeks....

Sometimes it seems like yesterday while other times it seems like an eternity.
Sometimes Thursdays come and go and I don't even realize it was Thursday...the day my sweet, little boy passed away...Thursday, September 15, 2016...
We are in a new year....2017, a year he will never be in, at least physically. But he will always be in my heart...always.

The silence in the house....has gotten easier on some days. But on some days, I listen for the machines, the people coming in and out of the house all the time. Every day, we get up and go about our, school, exercise, Girl Scouts, horseback riding, whatever the activity. Some days are easy to get up while others hard...but we do it because he would have wanted it that way. We will continue because that is what Ian would have wanted. We told him we would be ok, that it may take time but we would we will continue to work towards that....being ok.