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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)