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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 https://thegilchristblog.com

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 (http://gilchristhospice.org/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. 
P

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 right...you 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 heard....free.

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 me...so 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.

Friday, September 8, 2017

What Makes A Hero?

A hero is a person who is admired or idealized for courage, outstanding achievements, or noble qualities. For me that's Ian Alexander Scher and Becca Jordan Scher. They are my heroes.

As I sit in the sofa, wrapped in my Ian blanket, I think back to this morning when I got into Facebook and saw my on this day post. It was a link to the blog from September 8, 2016. I decided to read it...basically it was about the changes we were seeing in Ian and if they were to become our new normal. He had been sleeping 3-4 hours a day along with sleeping all night. His oxygen levels were dropping when we were suctioning him. The last few times we had been out he had problems with his HME. We had put a call into the pulmonary doctors to look into his vent settings. His smiles were not as strong. His energy level had decreased. His appetite seemed to be less. OMG...he was dying and we didn't know it. September 8, 2016 was a Thursday, he stopped eating the next day...more of the end, which again we didn't know. I still remember that week as if it was yesterday. I remember having Brian and I having a conversation with Becca that Friday night, she told us he was done and this was the end. OMG, what did she know. 

Watching my kids back then, and watching Becca today, have so much courage to continue to move forward. Watching them fight every day, in different ways, was and is heartbreaking while empowering. As Ian's first angel anniversary approaches, I hope we have the courage to get through the day, to face what the 2nd year with out him will bring us. To continue to live life like Ian did and Becca does...as a hero.



Tuesday, August 29, 2017

ENTOURAGE


 How appropriate the big announcement of Entourage comes out this week... Ian's Yahrzeit is this weekend, September 3rd, his 1st angel anniversary is September 15th. It's hard to believe it's been a year since we held his hand, heard his sweet voice, saw his handsome face... Smelled his scent. Hearing that Entourage was coming to life this week has made the upcoming days a little easier. There are not enough words or ways to say Thank You to the Hurwitz Family. Seeing the relationship Jared and Ian developed over the years was amazing, seeing the smiles in their eyes and hearing the laughter was amazing and something we will always be grateful for. Chai Lifeline was and is an amazing organization that will forever be in our hearts and changed our lives, especially Ian's and Becca's. 

ENTOURAGE OFFERS YOUNGER VOLUNTEERS THE OPPORTUNITY TO MAKE A DIFFERENCE IN THE LIVES OF PEERS LIVING WITH ILLNESSES (Article in Chai Lifeline National) 

A unique collaboration between Chai Lifeline Mid-Atlantic and Johns Hopkins Medical Center is integrating young volunteers into Chai Lifeline while creating exciting programs for children battling a number of medical conditions.

Entourage is the brainchild of Tzvi Haber, the region's director of programming. The program is named for the teams of volunteers who plan and execute the activities.

"We work with the child life and social work departments of Johns Hopkins to create programs that all children will enjoy," explained Haber. "Each month a different Entourage group plans a program that all pediatric patients on a specific ward or in a clinic can participate in and enjoy." He emphasized that programs are not specific to children with cancer, but encompass all pediatric departments.

"Our goal is to be a force for positivity and professionalism within the hospital."

The first Entourage event involved a teach from Talmudical Academy of Baltimore. The boys worked with the child life staff to build a multi-station obstacle course for remote-controlled cars on the 11th floor lounge of one of the hospital buildings. They invited all the children on the pediatric ward to come play.

"It was incredible. There were about 20 kinds playing with the cars and completing the course. Kids were laughing and playing and having fun. They were able to forget they were in the hospital while they were there," said Haber. He added that doctors and nurses stopped by during the activity, giving Chai Lifeline a chance to expand its profile in the hospital.

"This is really a win-win-win," he concluded. "On its own, child life departments don't have resources to devote to a single activity like this. Our partnership enabled them to offer an incredible activity to patients. Our Entourage group became our ambassadors in the hospital: they were a shining example of the values of tikkun olam (repairing the world). Finally, it was just plain fun for everyone. All the kids -- the patients and our boys -- had a great afternoon."

Additional Entourage programs are scheduled for Johns Hopkins, and the program begins at Sinai Hospital in Baltimore in September.

(Facebook reveal on August 28, 2017) 
They say that a revolutionary idea is usually one with its sleeves rolled up.
Today, we at the Chai Lifeline Mid-Atlantic Region are thrilled to announce the official launch of “CHAI.ENTOURAGE”, Chai Lifeline's revolutionary approach to caring for children confined to the pediatric wards of hospitals in the Baltimore area.
The brainchild of Jared Hurwitz, Entourage” is Chai Lifeline Mid-Atlantic at its best; offering nondenominational, hospital-based programming for children with diverse medical diagnoses and challenges. The Entourage initiative engages our Chai Lifeline volunteers at the forefront of pediatric healthcare, empowering them to be leaders and role models not just in the Jewish community, but in the greater Baltimore community as a whole.
Working in tight collaboration with the Child Life and Social Work departments of Sinai Hospital and Johns Hopkins University, the Entourage program enables local Chai Lifeline volunteers to develop and implement creative programming for every child in a hospital’s pediatric inpatient wards and outpatient clinics on a monthly basis.
In the past month, our volunteers have built a remote-control race track, and miniature golf-course, from scratch! Pediatric patients, typically subject to the doldrums of a long quiet day in the hospital, were enthralled.
They say that a revolutionary idea is usually one with its sleeves rolled up. Today, once again, Chai Lifeline Mid-Atlantic rolled up their sleeves.
Chai Lifeline Mid-Atlantic would like to express our appreciation to the extraordinary David and Cheri Hurwitz and family for sponsoring the Entourage program in memory of Jared's beloved ChaiSib, Ian Scher. Ian was a superhero to us all and a boy who we know would have been the most incredible Chai.Entourage volunteer.


Monday, August 21, 2017

Case Cares Foundation Provides Essential Support for Grieving Families After the Loss of a Child

Article in JMore Baltimore Jewish Living...by Simone Ellin

Few if any tragedies are as devastating as the loss of a child. Parents are not meant to outlive their children. Yet, sometimes the unthinkable occurs. It happens to Marci and Brian Scher, who lost their beloved son, Ian, on Sept. 15, 2016. After a debilitating lifelong illness, Ian succumbed at age 13 to complications of spinal muscular atrophy and pontocerebellar hypoplasia, a rare genetic disease that affects the brain, causing muscle weakness, eventual loss of motor function, and breathing difficulties. Though he was terminally ill, Marci Scher had not expected to lose Ian so soon.

Almost a year later, the Reisterstown couple and Ian's twin sister, Becca, are slowly adjusting to their new reality.

"It's a lot quieter," says Scher, tears filling her eyes. "We're used to hearing machines, ventilators. We're used to having a nurse in the house 20 hours a day," she adds. "We do more things as a family. When Ian was here, either me or Brian usually had to stay home with him, so only one of us could take Becca out."

Now 14 and a freshman at Franklin High School, Becca is extremely "resilient," Scher says of her daughter. "Most kids can't comprehend what she's been through. We tried to treat her as normally as possible under the circumstances." But Scher wishes Becca knew another teen who could truly relate to her experiences. Overall, says Scher, an administrative assistant to the executive director at Chizuk Amuno Congregation, "We're doing all right."

That's not to say that the pain has passed.

"It's a lifelong journey," says Scher. "When you lose a child, there's always a part of your heart that's missing." After the child is gone, Scher adds, "the family still needs support. Sometimes people are afraid to talk about Ian. They feel uncomfortable or think it will upset us. But we want to talk about him. We want him remembered."

One source the Schers turned to during Ian's illness and after his passing was the Casey Cares treated Ian and Becca to birthday parties, pizza and movie nights , circus tickets and, best of all, an opportunity for Ian to throw out the first pitch at an Orioles game. 

Founded by Maryland native Casey Baynes in 2000, the Baltimore-based organization offers a range of programs for critically ill children and their families in the mid-Atlantic region.

Baynes knows firsthand what it's like when a family loses a child. Her own parents lost a baby at 3 days old. Though the death occurred before Baynes was born, she felt the sibling's absence nevertheless. 

"Even when the child is no longer there, the family carries [the loss] with them. That child is always there in spirit," says Baynes.

It was important to Baynes therefore, to ensure that families still can take advantage of Casey Cares' goodies even after a child is deceased. For example, over the summer, the Schers received complimentary tickets to Hersheypark. They also participated in Casey Cares' Orioles 5K Run & Walk last month. "We've always registered [for the race]," says Scher. "But since [previously] Ian has always been sick, this is the first year we could participate."

Kim Meyers, Casey Cares' program director, says the organization's Better Together program is designed to help the family heal and to raise their spirits. "We offer a lot of support to siblings and parents," says Meyers. "It's an extremely sensitive thing. When we talk to parents whose children have died, we can't even tell them how sorry we are. There are no words....They know we are here," she says.

"[After a child dies,] a mother may not be able to get out of bed for weeks and she may need help with her other kids. A lot of times I'll be the one to reach out to see if they need anything ." Typically, says Meyers, families who take advantage of Better Together stay with the program for about a year.

"We had one family -- they were getting ready to celebrate the holidays -- and they just couldn't stand to be in their house without their child during the holidays. So, we found them a hotel, arranged meals, activities. We take care of all the planning so they don't have to think about anything."

Meyers arranges for tickets to special events for surviving siblings, always providing an extra ticket so the sibling can bring along a friend. That's what she did for Becca Scher when they sent her family to Hersheypark.

"The beauty of Casey Cares is that we get to know all the families," says Baynes. "They're all special and unique. Kim has the pulse on everyone. Sometimes, she'll come into my office and say "Hey listen, this mom really needs a spa day. I know it's not in our budget but.... We've never turned down a request."

"Ian's death hit us hard," says Kim. "We all knew him. I'll never forget the first time I met him. Ian was still able to communicate and we met him at the stadium [Oriole Park]. He threw out the first pitch. His sister, parents, grandparents were there. His father was so proud! It was a good day."


Thursday, August 10, 2017

Arrivals...Camp Simcha Special 2017

One may remember that back in March, my cousin's son, Wyatt, raised money as his mitzvah project for his Bar Mitzvah, for Camp Simcha Special Arrival Day. He worked with Tzvi Haber, Chai Lifeline MidAtlantic Program Director and a Camp Simcha Boys Assistant Head Counselor, to figure out what to do with the funds. Tzvi told Wyatt how much Ian loved arrivals, the bunkhouses, and all the things they did at camp. After Tzvi and Wyatt talked they decided to put the funds towards Arrival Day, making it grander than it already was. So Tzvi went to work and did his magic.

Tuesday, August 9, 2017, Brian, Jamie (Wyatt's mom), Wyatt and I left for our drive up to Glen Spey, NY.  Wednesday, August 10, 2017 was arrival day for Camp Simcha Special Boys. We arrived at camp around 11:15 and were greeted by Tzvi. We walked towards a group aof young men all dressed up in customes ready to greet all the Camp Simcha Special Boys. Before, we really began our day there, a trip into the infirmary was in order. It was great to see all the medical staff, most of them have been at camp for years...they all greeted us, asked how we were doing, how Becca was doing and showed Jamie and Wyatt around...after all, it's not your typical camp infirmary. It was back outside for Tzvi to give us a tour. A few of the bunkhouses were redone this year as well as the canteen and a new floor in the gym. We went down to the pool and saw some of the lifeguards and staff who helped Ian to swim a few years ago. It was great to be able to meet them and thank them for all they did for him. One can not got to the pool without someone getting thrown in...yup, Tzvi threw Wyatt in and then the life guards threw Tzvi in the pool. It was time to head back to the tunnel for Wyatt and Jamie to see arrivals, some boys had arrived.  The boys name was yelled and sung by all, he was escorted thru the tunnel and sandwiched by the counselors. The dancing continued with him for a few more minutes, after all, each boy gets welcomed this way, made to feel like a king. Nothing is impossible. The medical director reminds the counselors each year that while they are a "medical" camp, they like for the medical to be in the background and the camp part to be in the forefront. Tzvi called Brian and Wyatt up on the stage, shared who they were and what Wyatt had accomplished with his mitzvah project. Brian and Wyatt were treated like one of the boys and got the royal treatments. So you might be asking what was added to the arrival day. A flamethrower was purchased. A flamethrower is a mechanical device designed to project a long, controllable stream of fire. From what we could see the boys loved it. In addition, a 360 degree camera was purchased. This will give parents and family members a view like no other of their boys. We got to see a little bit of the end product on Facebook Wednesday night when we got home. Next, we had lunch with Rachel, Becca's big sister and physical therapist for camp, as well as Dr. Van, the medical director. After lunch, we found Tzvi, doing what he does best, welcoming boys into camp, to say goodbye. More hugs were given and we headed to the car. It was a wonderful, bittersweet day. I'm so glad Wyatt got to see why Ian loved camp and how Ian got to be just like one of the boys at camp. Wyatt got to see the amazing things camp does and the impact his mitzvah project will have on other kids over the years. 

It felt good to be at camp one more time, felt right...Ian was there with us, smiling down and loving it.


Wyatt getting treated like all the boys.

 The flamethrower.

Brian and Wyatt being sandwiched by the counselors.

Wyatt and Tzvi in the pool.

The new and improved canteen.

One of the walls in a new bunkhouse. 

A wall of another bunkhouse.

Thursday, August 3, 2017

Courage

According to Wikipedia, courage is the choice and willingness to confront agony, pain, danger, uncertainty, or intimidation. Physical courage is bravery in the face of physical pain, hardship, death or threat of death, while moral courage is the ability to act rightly in the face of popular opposition, shame, scandal, discouragement, or personal loss. I've been thinking a lot about courage since Alicia, the director of Camp Louise, posted her blog a few weeks ago. Each week they focus on a different midrash and one week it was courage. In order to understand more of where this post is going you need to know that the musical this year at camp was the Wizard of Oz. 

Alicia stated, as we can learn from the Cowardly Lion, courage is not about the absence of fear. It is dealing with difficulty in the face of fear. The Cowardly Lion demonstrates bravery throughout the show even before the Wizzard grants him courage. The Lion is actually much braver than he realizes.

Alicia went onto talk about how the campers show bravery and courage every day at camp. Maybe they are nervous about making friends, jumping into the pool and taking the swimming test, climbing to a new level on Adventure Park, getting on stage to perform, or trying a new food in the Dining Hall. They are encouraged by their counselors and bunkmates who help them tackle these new challenges. This has gotten me to think about how my family has shown courage over the years...Ian, Becca, Brian and myself have all had courage and faced fears over the years. We have been there for each other to help each other tackle our challenges. In the years before Ian passed we never knew what lied in front of us each day. What it took for each one of us to leave the house to go to school, to go to work, or just to go out to an activity and leave Ian in the house with his nurses or Brian or myself.  It wasn't a question of him being in good hands and being taken care of, it was the fear of would something happen, would this be the time we would get a phone call.  Facing that fear head on and walking out the door, closing it behind us...what would be in front of us when we walked back in the door. What courage Ian had to let all of the people who took care of him, all of his needs...to let them do it all. What courage it took for him to watch us walk out the door to go to whatever activity we were headed to...always laying there waiting for us to walk back in the door. 

Alicia went onto talk about when the Cowardly Lion is concerned for his friend Dorothy, he puts his fears aside and shows his bravery....well mostly. For us we put our fears aside for each of us and did what we had to do, went to school, went to work, or went on our outing.  Since Ian passed, our courage has come in different forms and we have been there for each other. Each day, we have gotten up, gotten ready for our day regardless of what is on tap for that day, school, work, an outing.  We have faced challenges over the past 11 months, challenges that we had a little bit of an idea what lied ahead...but do you ever really knows what lies ahead when you lose someone so close...your child and your twin brother. No, you don't. But we have some how found the courage, faced our fears and gotten thru the days, even if it was just getting out of bed. We have been there for each other on the bad and good days. Encouraged each other to do what we needed to do, reminded each other that he would want us to find a way to get it done, whatever it is. 

"Alright, I'll go in there for Dorothy. Wicked Witch or no Wicked Witch.
Guards or no guards, I'll tear 'em apart.
There's just one thing I want you guys to do: talk me out of it."

Alicia continued on what are you most excited to try? Framing it in this way puts a positive spin on some of our fears. And if you are a bit (or a lot) overwhelmed, you may need to fake it for a bit until you truly feel courageous. 

"Put 'em up, put 'em up! Which one of you first?
I'll fight you both together if you want.
I'll fight you with one paw tied behind my back. I'll fight you standing on one foot.
I'll fight you with my eyes closed....ohh, pull in an axe on me, eh?
Sneaking up on me, eh? Why, I'll....Ruff!"

Think about your own lives. Life is hard sometimes. Not dealing with issues that come up can be easy, but facing fears head on makes us stronger. Is there something you have been wanting to try that you keep putting off? How can you start accomplishing it with a little bit of courage and encouragement. 

You don't need to wait for the Wizzard....

"You, my friend, are a victim of disorganized thinking.
You are under the unfortunate impression that just because you run away you have no courage;
you're confusing courage with wisdom."

Be brave, start on your path and:

"Follow the yellow brick road!"

Putting a positive spin on facing our fears...faking it for a bit until you truly feel courageous, I know we have been doing a lot of that...faking it.  Putting on a smile outside but not having it on the inside. Courage comes in all shapes and sizes, some days you have more than others, some little and some lots. Becca facing each day with out her twin brother, her other half...and how she will have to face each and every day from here on out...she is the most courageous person I know. I think about Ian and how courageous he was, especially at the end. I can only imagine the fear he had, what would be ahead of him when he passed. How courageous he must have been, knowing he would be without us until the time came for us to be together again...he is the most courageous person I know. Then there's Brian, the most courageous man I know, facing each day knowing he could not change the outcome of Ian's diagnosis. Looking into his son's eyes on the night before he passed telling him it was ok to go, ok to go to heaven and we would be ok. Faking the ok part....are we ok....nope we are not. I'm not sure we will ever really be ok, at least not like we were before. All 3 of us are different people then we were 11 months ago, we will never be the people we were on September 14, 2016, they left at 7am September 15, 2016. But we are more courageous then we were before, stronger than we were before....and I believe there is not a fear we can't eventually face. Even if we don't realize it at the time, we will over come our fears, face courage head on and figure it out, whatever it is.


Saturday, July 15, 2017

Fearful thing...

I was at a funeral yesterday and the rabbi read this poem, it really seemed to resonate with me.

It is a fearful thing
to love
what death can touch.

A fearful thing 
to love,
hop, dream; to be--

to be, 
and oh! to lose.

A thing for fools, this,
and
a holy thing,
a holy thing 
to love.

For 
your life has lived in me,
your laugh once lifted me, 
your word was gift to me.

To remember this
brings a painful joy.

'Tis a human thing, love,
a holy thing, 
to love
what death has touched.

(Chaim Stern)


Sunday, July 9, 2017

Butterfly Exhibit

The Brookside Gardens are beautiful. The 50 acre property features gardens with combinations of color and texture that merge together all senses. In addition, they host annual two events...the wings of fancy live butterfly & caterpillar exhibit and the garden of lights. Today we had the opportunity to met some friends there for the butterfly exhibit. We have heard many wonderful things about it but seeing it with your own eyes is amazing. Our friend, Kathy, has worked at the gardens for years, so having her and her husband, Sam, there with us to explain everything made the day more special. Becca loved every second and was in her element being able to talk to Kathy all science like. An extra special moment was when one of the butterflies landed on Becca (photo below where the butterfly is closed, it should be noted that when this butterfly opened the wings were blue).

We can't wait to go back for the garden of lights with Kathy and Sam.


Monday, July 3, 2017

Unveiling - July 2, 2017

The unveiling is the formal dedication of the headstone. It is customary for the unveiling to take place 12 months after the funeral as a way to mark the end of the formal mourning period. However, the unveiling may take place any time after Sheloshim (30 days).

Jewish law requires that a grave be marked, but the type of marking and the headstone are not specified. 

When we first started talking about Ian's unveiling we realized a year was right at the beginning of the school year, not the best time for Becca. We then asked Becca if she would like it before camp or after camp, she said before camp so she could enjoy the rest of the summer and have fun at camp without the unveiling hanging over her head. Looking at the calendar July 2, 2017 was the best date. A few days ago I was at grief therapy and realized July 4th weekend held many different meaning for Ian. July 4th weekend 2009, everything started to go down hill, July 4th weekend 2012, we got a name VRK1, July 2, 2017 we had Ian's unveiling, 9 1/2 months after he left us. It was immediate family, helping us to get through the day, saying prayers and honoring Ian with his forever stone.


UNVEILING PRAYER
A thousand years, in the sight of our eternal and merciful Father, are but a day; the years of our life but a passing hour. He grants us life and life He has taken away; praised be His name.

Ian Alexander Scher has been taken from our midst. We are pained by the gap in our lives. Yet love is strong as death; the bonds love creates are eternal. And ours is the blessing of memory, through which the lives of our departed continue to be with us.

Almighty G-d, Master of mercy, whose compassion endures, let neither death nor sorrow have dominion over us. Grant us comfort, strength and consolation, as it is written: "The Lord shall be your enduring light, and the days of your mourning shall come to an end."

Bless us with love and peace, that we may serve You with a perfect heart. Accept our act of devotion, O Lord, as we consecrate this monument to the memory of Ian Alexander Scher with love and respect.

May his soul be bound up in the bond of life. Amen.  


PRAYER ON VISITING GRAVES
At the rising of the sun and at its going down
We remember them.
At the blowing of the wind and the chill of winter
We remember them.
At the opening of the buds and in the rebirth of spring
We remember them.
At the blueness of he skies and in the warmth of summer
We remember them.
At the rustling of the leaves and in the beauty of autumn
We remember them.
At the beginning of the year and when it ends
We remember them.
As long as we live, they too will live; for they are now a part of us, as we remember them.
When we are weary and in need of strength
We remember them.
When we are lost and sick at heart
We remember them.
When we have joy we crave to share
We remember them.
When we have achievements that are based on theirs
We remember them.
As long as we live, they too will live; for they are now a part of us, as we remember them.


AT THE GRAVE OF A CHILD
O Lord, as I stand at the grave of my beloved child, I tenderly recall the joys that he gave me during his lifetime. I remember how I enjoyed watching him grow and I am grateful for the time we had together. Though this time was brief, many were the blessings he brought into our home. The passage of years will never fill the void in my heart, nor can time soften the pain of bereavement. Though he is no longer in our midst, his memory shall forever be enshrined in my heart.

O merciful G-d, Giver of life, You have recalled what is Your own, and have taken him into Your loving care and keeping. Though my heart still grieves, may I, who have known the joys of parenthood, bring love and cheer into the lives of others. I pray that the soul of my dearly beloved child may be bound up in the bond of eternal life, together with the souls of all the righteous that are in Your keeping. Amen.


AT THE GRAVE OF A BROTHER OR SISTER

O merciful G-d, I fondly recollect the happy years spent with my dear brother, sharing the love and traditions of our home and family. Alas, death claimed you too soon and removed you too early from those who loved you. Though You have called him back, O G-d, I shall always hold sacred the memories of his kindness and sincerity, love an devotion. O Lord, grant that the recollection of his life provide an incentive to righteous living. I place my trust in You who are the source of all life and my strength in time of sorrow. Though a link has been severed from our family chain, help me, O G-d, to be more closely united with those dear ones who remain. May the soul of my beloved brother be bound up in the bond of eternal life together with the souls of all the righteous that are in Your keeping. Amen.




Wednesday, June 28, 2017

Project Lead the Way (PLTW) Biomedical Science and Questions

Sometime last school year Becca applied to the biomedical program at Franklin High School and got accepted. She was super excited. 

This program allows students to explore the concepts of human medicine through an introduction of topics such as physiology, genetics, microbiology and public health. Students acquire strong teamwork and communication practices, and develop organizational, critical-thinking, and problem-solving skills as they investigate various health conditions and infectious diseases, examine the interactions of human body systems, and explore how to prevent and fight infection. In Grade 12, students have the opportunity to work on an independent project with a mentor. Successful completion of the program allows students to pursue post-secondary education and careers in the biomedical sciences.

Program of Study
Grade 9 - Principles of the Biomedical Sciences
Grade 10 - Human Body Systems
Grade 11 - Medical Interventions
Grade 12 - Biomedical Innovation PLTWW Biomed CWE

A few weeks ago, she spent 3 1/2 days at the high school for a biomedical camp. The point of the camp was for the kids to meet others in the program, get a feel for the school as well as a feel for the program. Each day was a different topic. Becca loved each day and came home excited about each topic. One of the days was genetics, this led to some questions on her part, I did the best i could to answer them as well as let her read the report from Ian's initial diagnosis in 2012. This answered some of her questions but also led to more questions. With those I reached out to the genetic counselor we used in 2012 with her questions. Here is the wonderful letter she wrote back to Becca. 

Dear Becca,

I hope you are doing okay given all you have been through with losing Ian.  He was a special boy and is remembered by so many people, as I am sure you know.  I don’t know if you remember me, but I worked with Dr. Raymond at Kennedy Krieger and was one of the people who helped to figure out what was causing Ian’s problems.  

Your mom tells me that you’re studying genetics in school now and that you have some questions about the genetic cause of Ian’s condition.  Genetics is a huge topic and there is lots to learn, but I have tried to cover some basics in this message as a starting point.

By now you have probably learned about chromosomes, genes, and DNA.  DNA is a chemical substance contained in each of our cells and it is made up of four chemical units that we call “nucleotides”.  They each have specific names.  We abbreviate the names using the letters A, G, T, and C.  We have more than 3 billion of these DNA letters in our genome, but they are soo microscopically tiny that we cannot see them with the naked eye.  We have two copies of all of our genetic information.  One set comes from our mother (the egg) and one set comes from our father (the sperm).   So we have double of everything, which is designed to give us a backup system in case a gene is broken or not working. 

Clusters of DNA letters form genes, and we give these genes names depending on what they do.  Most genes contain instructions that tell our bodies to make important proteins or other molecules that our bodies need in order to function.  Some genes are responsible for making enzymes that digest the food in our stomachs.  Other genes are responsible for protecting us from damaging UV rays that can cause cancer.  Some genes make up the cells that allow our brains to retrieve memories.  There are probably about 25,000 genes in total and some of them are responsible for doing more than one thing.   Some genetic conditions are caused by mistakes, or disruptions, in genes that play very important roles in our bodies.  This is the type of genetic problem Ian had (more about this below).   Sometimes people call these mistakes “mutations” - that is not a word that I love, but you will hear people use it.

The genes are strung together a bit like necklaces and they are wrapped around structures in our cells called chromosomes.  The chromosomes are the little worm-like things you see inside cells and we have 46 in total (23 from mom, 23 from dad).  Again, double of everything.  The final pair of chromosomes are called “sex” chromosomes.  Men have one X chromosome and one Y chromosome (the Y chromosome is tiny!) and women have two X chromosomes.  Genes on the Y chromosome are what cause men to develop some different features than women.   Some genetic conditions are caused by deletions, breakages, or duplications of chromosome material, in which whole clusters of genes are either missing or duplicated or disrupted.  You might learn about a condition called Down syndrome.  People with Down syndrome have a whole extra copy of chromosome 21, which is a LOT of extra genetic material, so they can have a lot of health issues.   Sometimes if babies have deleted or duplicated chromosomes they are too sick to ever make it out of the womb, and this is how a lot of pregnancy miscarriages are caused.  Ian did not have a chromosome disorder.

The gene that was affected in Ian’s case is called VRK1 and it is located on chromosome 14.  When Ian was diagnosed, we did not know very much about what this gene does, and today we still don’t have a lot of information about it.   Recent research shows that VRK1 is an important gene for the development and regulation of the central nervous system (the spinal cord and the brain) and that brain and nervous system structures cannot develop or sustain themselves without it.   Your mom and dad each carry one broken copy of this gene and one working copy of this gene (not their fault!  These things happen randomly).  You also carry one broken copy and one working copy.  The good news for the three of you is that one working copy is enough to keep you healthy and functioning normally.   However, unfortunately, Ian inherited the broken copy from both your mom and your dad, so he had two broken copies and this is why he was sick.   

Conditions that require two broken copies in order to happen are called autosomal recessive conditions.   You will also learn about dominant conditions which only require one broken copy of a gene, and you will learn about X-linked conditions caused by genes on the X chromosome.   These are each inherited in families in different ways.   Autosomal recessive conditions are usually very rare, but sometimes they run more commonly in populations that have a lot of shared ancestry, like Ashkenazi Jewish people.  We think that the mutation in your family may be more common in families of Ashkenazi Jewish descent.

The specific VRK1 mutation in your family is called c.C1072T; p.R358X.  What this means is that a “C” in position 1072 in the VRK1 gene was changed to a “T”.  This change in the code meant that instead of making a full VRK1 protein, Ian’s body stopped making the protein altogether.  We call this a “nonsense” mutation because the DNA code stops making sense and thus the body stops making the protein it’s supposed to be making.  Since both copies of the VRK1 gene were affected in Ian, his body did not have this protein at all and that is why we think he developed differently.

It is important to remember that we are more than just our genes.  Two children with Down syndrome, or two children with VRK1 mutations, will still be very different from one another and there are many other things that affect our health and how we grow and develop, such as our environment and our different combinations of other genes.  But some genes have very important functions and when we see mistakes in these genes they can have serious consequences for health.

We do not expect you to ever have any problems like Ian, because your fully working VRK1 gene is doing the job you need it to do.  However, when you decide to have children of your own, it will be important for your partner to have testing to see if he carries any mutation in the VRK1 gene, especially if he is also Jewish.   There are other genetic diseases that run more commonly in Jewish families, such as Tay-Sachs disease, so it will be important for you and him to have carrier testing for these conditions as well.

Here are some links with visuals corresponding to the concepts discussed above.  I hope this answers some of your questions and isn’t too basic or too complicated.  Please feel free to get in touch if anything is unclear.


All the best,
Leila



I'm sure over time more questions will come up and we will do our best to answer them as well as help her to continue to deal with her grief. She is doing ok after this weekend but the unveiling brought emotions to the for front for all of us. We continue our grief therapy as well as private therapy to deal with the loss of Ian and the impact it has had on our lives individually as well as a family. As always, thank you to all who have been there for us over the years, especially this pass one as we have our year of firsts.