Tuesday, November 14, 2017

Gilchrist Blog in Honor of National Hospice and Palliative Care Month

This post was first posted on November 12, 2013 on

To continue our celebration of National Hospice and Palliative Care Month, we asked one of our Gilchrist Kids families if they would tell us what our care means to them. Here is what Marci Scher, mother of Gilchrist Kids ( patient Ian said:

It took us a while to decide to bring Gilchrist into our home, after all, you hear Gilchrist and what comes to your mind...HOSPICE. Accepting someone has a terminal illness is one of the hardest things to do; accepting that SOMEONE is your child....unthinkable. Our journey includes this and figuring out how to make the best of an unimaginable situation led us to Gilchrist. We needed the assistance Gilchrist Kids could offer.

Regardless of being with Gilchrist for Hospice or Palliative Care, the whole person is treated; improving his or her quality of life, looking at comfort for all, making memories and allowing us to enjoy our time together. Gilchrist has been one of the best decisions we have make along our journey with Ian, having the nursing case manager has helped us to figure out some difficult decisions we have had to make in Ian's care. Knowing someone is always there, regardless of what the needs are, has reduced our stress levels in an already overwhelming and stressful situation.

The social workers, child life specialists, volunteers and aides have all been there to offer support in whatever way they can. Five to six days a week, someone from Gilchrist is in our home. Child life, comes to spend time with both kids, giving them the one on one time we can't always give. One of our next visits, we will play a family game to add to our memories. Twice a week, two different volunteers come to the house to spend time with Ian, one has even expanded her expertise to include computer games, being his hands, while the other comes and plays and sings music (the Beatles) for Ian. The social worker and nurse check in with us weekly, at least, to make sure we are all doing okay and to see what else they can do for us.

To them and to everyone else, we say keep doing what you are doing, helping us to make memories, to provide our family with everything we can and to take care of each other.

It is amazing how this article was written in 2013 and everything in it held true until the end on September 15, 2016. We are still with Gilchrist for our Bereavement Needs. 

Wednesday, November 8, 2017

Timetables, Myths and Misconceptions of Grief

Over the past few weeks, we have finished up a bereaved parents support group as well as had some things happen which have made me want to do more research into grief, how it affects people, timetables, different kinds of grift, etc.  You get it...GRIEF.

There are theories out there that put timetables on grief. One of the most frequently asked questions is: "How long will these feelings last?" The following guidelines are general descriptions and may vary widely from one individual to another.

Month one: In the first month, grieving persons may be so busy with funeral arrangements, visitors, paperwork and other immediate tasks that they have little time to begin the grieving process. They may also be numb and feel that the loss is unreal. This shock can last beyond the first month of the death was sudden, violent or particularly untimely.
Month three: The three-month point is a particularly challenging time for many grieving persons. Visitors have gone home, cards and calls have pretty much stopped coming in, and most of the numbness has worn off. Well-meaning family and friends who do not understand the grief process may pressure the grieving person to get back to normal. The grieving person is just beginning the very painful task of understanding what this loss really means.
Months four through twelve: The grieving person continues to work through the many tasks of learning to live with the loss. There begin to be more good days than bad days. Difficult periods will crop up sometimes with no obvious trigger, even late into the last half of the first year. It is important that the grieving person understands that these difficult periods are normal rather than a set back or a sign of lack of progress.
Significant anniversaries: During the first year, personal and public holidays present additional challenges. Birthdays (of the deceased and other family members), wedding anniversaries, and family and school reunions can be difficult periods. Medical anniversaries, such as the day of diagnosis, the day someone was hospitalized or came home from the hospital can also bring up memories. The grieving person may not be consciously keeping track of these dates but is still affected by them. 

Time Frame: From immediately after the death to several weeks or months.
Experiences: Confusion, no ability to fully comprehend what has happened; numbness and physiological reactions.
Needs: Frequent physical presence of family and friends; permission to grieve and express ever-changing emotions; avoid tranquilizer so.

Time Frame: 2-3 months to 6-8 months
Experiences: Very difficult period; extended support system no longer present; feelings of guilt, extreme sense of loss and loneliness persist; may experience hallucinations and suicidal thoughts.
Needs: Opportunity to talk with understanding friends; may seek professional support. Sometimes support groups are helpful; beginning of recovery.

Time Frame: 6-8 months to 2 years
Experiences: Efforts to reestablish life; able to make significant decisions; renewal of relationships and establishment of new ones; may be hit at times by deep grief experiences.
Needs: Continuing support of family and friends; beginning interest in activities and involvement; may still seek professional help.

One of the articles I found discussed some common myths and misconceptions about grief:
**"Grief is felt only after a loss occurs." Grief also can be experienced in anticipation of an expected loss,  whenever there is a threat of loss and we begin to imagine the worse.  As soon as we become aware that a death ~ or a significant loss of any kind ~ may happen, we can experience anticipatory grief and mourning. 
**"Grief and mourning are the same." Grief is our own private,  inner response to a loss. Mourning is the outward expression of grief, the social response that we openly share with others. Everyone grieves, but not everyone mourns. 
**"Grief occurs in orderly, predictable stages." Grief and mourning are highly individualized, according to our own unique personality and life experiences, as well as the nature of our relationship with the deceased, how the death happened, the support system we have available, our own past experience with loss and our particular religious and cultural background. 
**"Most people recover from grief and eventually return to normal." Grief is not an illness from which we will recover; rather, it is a gradual process of transformation.  It may seem that when our loved one died, a part of us died, too.  Every aspect of life is different and forever changed, and a "new normal" must be found, as we learn to integrate this loss and live in a whole new world without the physical presence of the one who has died. 
**"Time heals all wounds, and eventually grief comes to an end." Grief is an adaptive response that is not bound by time. It never really ends; we don't "get over" grief.  It is something we learn to live with over time, as we gradually adjust to the physical absence of the one who has died. Grief softens and erupts less frequently as time goes on, but it can revisit us at any time, and in varying intensity, whenever we are reminded of our loss.
**"The first year of grief is the hardest, and the time when support is most needed." For some, the second year is even harder than the first. The reality is that we will need ongoing compassion and support. 
**"The goal of grief is to let go of the one who died and move on with life." The bonds of love are never severed by death, and if cherished memories and legacies are intentionally tended and nourished,  it is normal and healthy that a close relationship with the deceased will continue and endure throughout our lifetime.

The truth is that grief takes as long as it takes, and there is no right or wrong way to "do it".  

Don't let death rob you of the moments of joy still to be remembered, and found. Don't let grief rob you of those places where love and joy live forever in the heart. -Darcie Sims

Lately, I've been struggling. Nights have become difficult again, closing my eyes is hard because of the images I see, getting out of bed in the mornings are hard...basically, I'm just going with the movements, doing what I have to do in order to make sure that Becca, Brian and I get what we need. 

This morning, I watched Thursday night's episode of Grey's Anatomy. The saying at the end was: We are forced to acknowledge that certain kinds of magic exist, and that history and memory and the ghosts of our past are sometimes just as tangible as anything we can hold in our hands.

Tuesday, October 17, 2017

The Gift of Grief

From Giving Sorrow Words by Candy Lighner

Death takes away. That's all there is to it. But grief gives back.

By experiencing it, we are not simply eroded by pain. Rather, we become larger human beings, more compassionate, more aware, more able to help others, more able to help ourselves. Grief is powerful. It plunges us into the depths of sorrow and forces us to face the finiteness of life, the mightiness of death, and the meaning of our existence here on this earth. It does more than enable us to change it: it demands it. The way we change is up to us. It is possible to be so afraid of one aspect of it that we become frozen in place, stuck in sorrow, riveted in resentment or remorse, unable to more on....

But it is also possible to be enlarged, to find new direction, and to allow the memory of the beloved person we have lost to live on within us, not as a monument to misery but as a source of strength, love and inspiration. By acting on our grief, we can eventually find within ourselves a place of peace and purposefulness. It is my belief that all grievers, no matter how intense their pain, no matter how rough the terrain across which they must travel, can eventually find that place within their hearts....

Sunday, October 15, 2017

Dear Mommy

In my many searches on the internet about grief and loss of a child, I came across this and wanted to share.

Dear Mommy,

I know you have a hard time facing each day without me, struggling to make sense of my death. I see you cry before bed each night and in your car on the way to work. I'm so sorry, Mommy.

I'm sorry I had to leave so soon. I didn't want to leave you, but please know that although you cannot see me, I am never far away.

Those chills you get when you are all alone, it's me giving you a hug. I'm still here, Mommy. I'm right here. Those beautiful rainbows that stop you in your tracks. It's me saying hello. Those butterflies that flutter around you. It's me reminding you you're not alone.

I hear you say goodnight to me as you drift to sleep each night. You can't hear me, but I whisper "goodnight" back. I wish you could hear me whisper "I love you" everyday.

I know you miss me with every breath you take. That every joyful moment is also filled with sadness and wonder. Wonder of what I would be like, what I would look like, what I would become. I wish you could see me now, Mommy, I'm happy. I'm free.

Mommy, I want you to know that I'm okay. I'm at peace now. I know it's not easy to get through the days, but you keep on going, bringing me with you every step of the way. Thank you, Mommy.

I know one of your biggest fears is that people will forget about me. They haven't forgotten, Mommy. You keep my memory alive. You say my name and tell my story. I live on through you.

I'm so proud that you are my Mommy. You are so brave, so kind, so loving. Although our time together was short, you always took care of me. Protected me. Loved me. You are such a good Mommy.

Don't question if I knew how much you loved me, I knew. I can still feel your love, it reaches me all the way in heaven.

I know there are days that you think you can't keep going. Days that you can't wait to join me, just so you can hold me and kiss me one more time. I know how much you long for that day, but please keep living, Mommy. I want you to live, to smile, to feel joy. You don't need to feel guilty when you're happy. I like to see you smile. I love the sound of your laugh.

Please keep going. Keep carrying me with you in all that you do. I promise I'm here, Mommy. I'm waiting here for you. I will always be with you, sending my love from heaven, until you can hold me again. 

Don't let go, Mommy. I live on through you. I'm a part of you. I love you. 

--Author Unknown

(I think Mommy can be replaced with Daddy and Sister in our instance.)

Wednesday, October 11, 2017

The Linkage Between Grief and Love

Over the last few weeks, Brian and I have been attending 2 different support groups for parents who have lost children. One of the groups is for any age child with the loss being in anyway. The other group is for children who were treated at Hopkins so the oldest child was 19. Each group is different and I have gotten different things from both. One of the main things I have gotten from both groups is that the grief journey is individual for each person and while you may think you are through one aspect of the journey, something, anything can trigger you to go back to a place you thought you were past. We have explored all the stages of grief and how you can be in many different stages at one time. We have explored the symptoms and signs of the different stages and how they can affect your different aspects of life. The diagram of the Grief Loop really helped me to understand this. As you can see from below, it comes in different loops and back and forth.

We were able to express our feelings and thoughts to those who understand what it means to lose a child. 

The linkage between grief and love is not something I thought about or understood until we lost Ian. It was explained during one of our group sessions:

Comes the Dawn
(Author unknown; qtd. In Farra 1986)

After a while you learn the subtle difference
Between holding a hand and chaining a soul,
And you learn that love doesn't mean leaning
And company doesn't mean security,
And you begin to understand that kisses aren't contracts
And presents aren't promises
And you begin to accept your defeats
With your head held high and your eyes open,
With the grace of an adult, not the grief of a child.

You learn to build your roads
On today because tomorrow's ground
Is too uncertain for plans, and futures have
A way of falling down in midflight.
After awhile you learn that even sunshine
Burns if you get too much,
So you plant your own garden and decorate
Your own soul, instead of waiting
For someone to bring you flowers.

And you learn that you really can endure,
That you really are strong
And you really do have worth
And learn and learn...and you learn.
With every goodbye you learn.

Sunday, October 8, 2017

Changes and Grief for Becca

People have grief and change in different ways, no one person handles it the same way. We have noticed that over the past, especially the past year as the 3 of us have grieved Ian. Try being a teenager, having all the normal hormones and stuff that comes with just being a "normal" teenager and add change and grief of your twin brother. Becca has been dong fairly well with it all. She is slowly figuring out how to live in the "normal" world. Being out and about and not worrying about what is going on at home, when will that phone call come (this is hard for all of us and we are each figuring this one out). Her grief comes and goes and is triggered by different things just like adults. She is still seeing the child life specialist thru Gilchrist Kids for grief therapy as well as regular therapy. 

Over the years, Brian and I had noticed issues with her academics. We went through different avenues with the school system to try to have her tested for learning issues, however, as her grades were not suffering, they refused to test her. At the end of the school year last year, we decided to have her tested privately. She was diagnosed with ADD (we knew this one) and dysgraphia. Dysgraphia is a learning disability that affects writing abilities. It can manifest itself as difficulties with spelling, poor handwriting and trouble putting thoughts on paper. Since dysgraphia is a processing disorder, difficulties can change throughout a lifetime, as well as difficulties can overlap. Getting this diagnosis has answered a lot of questions for us...we now know what we have been seeing and how to help her, especially since she started high school this year. The high school has been working with us and her getting the proper accommodations in place. Becca has started with a private tutor from a school that specializes in learning disabilities. It is amazing to see the difference the tutor has made with the proper accommodations and tools in place for her to use. Comparing her writing on paper to writing on the computer...amazing. We will continue to work with school, the tutor and anyone else we need to for Becca to continue to thrive. She is 1/2 way through her 1st quarter of 9th grade and her grades are wonderful, 2 B's and the rest A's. She was nominated as student of the month for September by her gym teacher. Below is a photo of Becca with the principal getting her certificate. 

Becca continues with Girl Scouts, horseback riding and Batya. Staying busy and juggling everything as best as she can. Overall, she's doing well, thriving while dealing with the change and grief of losing Ian.  As I sit here and think about it....Becca, he's smiling down on you, sticking out his tongue, beyond proud. 

Thursday, September 14, 2017

365 Days

Has it really been 365 days since I last kissed you, helped you, told you I loved you, heard your voice, smelled your smell...really 365 days since you were physically present. I still remember our talk 364 days ago while, Mommy and Daddy were tucking you into bed for the night. You were so tired, we could see it in your eyes, could hear it in your voice (what little bit was left), your answers were yes and no to our questions. We talked about your being ready to go to heaven, it was the 1st and only time you said yes you were ready. You were worried about Daddy, Becca and me, wanted to know if we would be okay. We told you that eventually we would be, not right away but over time we would be...over time. We told you we loved you, gave you huge hugs and kisses, gave report to the night nurse and went to bed. Little did we know we would get a knock on our door at 5:45am, that something wasn't were unresponsive. I didn't go to sleep on Wednesday night thinking that our talk, our hugs and kisses would be the last. 

We knew this journey was going to be a painful one for us. We knew you would be free, free from the pain, free from the machines, free from the tubes, free from the medicine, free to move around and do what you wanted, free to walk, run, skip, free to yell, scream, free to be

I was reading an article on the grief toolbox regarding healing taking a lifetime. This article described grief like a major surgery such as open heart surgery. Just as in a surgery like that, one must heal in layers from the inside out. If you try to close the opening too soon you often have infection trapped inside and you may not know it for a long period of time. This made sense to just like that, I need to heal in layers insuring that each step I heal infection free.  Acknowledging and accepting that will take time will allow my lifelong journey of healing to begin. 

Also like surgery, sometimes you have setbacks. We've had them,  we've acknowledge them (when we realize they happened) and we've moved forward from them. I'm to early in this journey to know what some of my triggers/setbacks are. We've made it through the 1st of everything, the holidays, your birthday, Mother's Day, Father's Day, the summer of you not going to camp, the start of school, your yahrzeit, the beginning of the school year, and now day 365. I didn't get angry on any of these days or any other days, sad, depressed, missing you, yes all of those. But I also tried to remember the happy and good times. The "if only's" and "what if's" drive me crazy at times. Answers we'll never get. As each layer heals, I'll learn a new method of making it through the moment, through the day, through the week, the year...just through. 

Learning to live without someone in your life, that has been such a part of your life for so long, is like learning how to do everything you once did together minus one arm. It is learning to live completely  differently. It is learning how to enjoy things you once enjoyed together, differently. It is learning how to fill a void in a healthy way. This is just like allowing our body to grow new tissue to replace the space left by infected tissue that was removed during surgery. I will only allow something equally as beautiful to take that space.

Just as any major surgery will leave a scar, so does grief.  It is not something to cover up and hide, but rather acknowledge the existence of it, wear it as a badge of honor to the loved one you lost, and feel NO shame from it. We only grieve for those we love, and love lasts a life time.