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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)


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. 

Thursday, June 22, 2017

Amazing Middle School Career

We are so proud of Becca. Her report card showed up today, all A's and B's. Going back and looking at her middle school career, she made honor roll ever quarter...way to go. Keeping her grades up over the years while continuing to deal with our journey is amazing. We love you with all our hearts and can't wait to see what your future holds.

On the last day of school, I sent an email to all of Becca's teachers from middle school:

We wanted to say a special thank you to all of Becca's teachers from Franklin Middle School. As you know she didn't have the "normal" family and middle school years, however each and everyone of you played an important role on helping her to overcome all she had too. We all worked together to make sure she developed the skills along with the resilience she would need to get to where she is today. Each year was difficult in its own right due to Ian's ups and downs and never knowing when he would pass. With that happening so early in her 8th grade year, you all took her under your wings to make sure she would have a safe place to be dealing with her grief, thank you for that. Please know Franklin Middle will hold a special place in our hearts for all you have done for our family over the last 3 years.

Have a wonderful summer and continue to do what you all do so wonderfully, teach and care for the kids.


I heard back from a few of her teachers and I wanted to share the wonderful things they had to say:

Thank you for your kind works. It was my pleasure to support her during her experiences at FMS. Becca is a wonderful, young woman who will continue to persevere. I look forward to hearing about all her accomplishments as she progresses through high school.

I am very touched by your email.

Thank you for your kind message, and it was great having the opportunity to work with Becca in 7th grade. I know that she will do great things in high school and in the future to come!

Thank you for the pleasure of teaching her!

Thank you for your kind message. Please know that you and your family will also be in my heart.

Thank you very much for your email. Your family has been in my thoughts, especially this year. Becca is such a wonderful student and person! Her strength and personality I am sure will lead to a bright future! I wish her the best of luck as she continues into high school.

It was a pleasure to teach Becca. I wish her the very best in the future.




Friday, June 16, 2017

How to Love Someone Who is Grieving Their Child

Found on WWW.emilyrlong.com

When someone you love has experienced the loss of a child, it's hard on everyone. They are engulfed in a sea of unbearable pain and grief and sorrow while you may be struggling to stand beside them, wondering what to say, what to do, and what they need. You love them dearly, but you don't really know what they are going through and you don't know what to do.

Maybe you're grieving too.
Maybe you're suffering as you witness their suffering.
Maybe you feel helpless.
Maybe you find yourself saying all the wrong things because you don't know what else to say.

Maybe you want to love them through this, but no one taught you how to do that.

It's ok.

Most of us don't really know how to navigate this thing called grief. They don't teach Grief 101 in high school (although, perhaps they should!).

In an ideal world, your heartbroken loved one would be able to say, "Here, this is what I need. This is how you can help me." Unfortunately, that's generally not how it works. They have been crushed by a devastating loss and, chances are, they're giving everything they have to simply get out of bed in the morning. Trying to articulate what they need and what kind of support they want probably feels next to impossible.

Fortunately, loving a grieving friend or family member isn't as complicated as it can seem. Generally, it's simply about being a compassionate and kind human.

SHOW UP
First and foremost, show up. Be here.

Show up at their door. Run errands for them. Do their laundry. Make them meals and sit with them to ensure they eat (many times in early grief people lose their appetite and don't eat regularly). Lay on the bed and hold them while they cry.


Continue to show up for months or years - this is a lifetime loss and they will need you for a lifetime. Text them. Call them. Send cards. Remember birthdays and anniversaries of their child's life. Help them plan birthday parties and holiday remembrances and show up for death anniversaries. Mark them on your calendar so you don't forget - because they won't. And they won't forget those who show up for them.

You will likely say or do the wrong thing at some point. But if you are willing to keep showing up and work through the discomfort, that's what will matter. That's how you'll help.

BE PATIENT
Grief is not short lived. Nor is it linear or simple or logical.

Grieving a child takes a lifetime. We love our children for a lifetime and we will grieve them for a lifetime. Society likes to tell us that after a certain period of time, grief should be completed and we should be ready to find "closure" and "move on."

To be quite honest, if you buy into it that way of thinking, you will struggle to be able to support your loved one as long as they will need you to.

Your friend or family member will grieve far longer than you will want to hear about it or be around it. This is where they will need you to be patient and understanding.

Those who grieve their child(ren) will eventually find a way to live with that grief and that aching hole in their life, but they will never stop missing their child or longing to hold them. Birthdays and holidays and anniversary dates may be painful and challenging for the rest of their life.

When you find yourself tiring of their grief or wanting them to "get over it already," remember - they are far, far more exhausted and sick of grieving than you can even imagine. This is when they need you most to keep showing up.

LISTEN
While you might be struggling to know what to say, it's likely your loved one really wants someone who will listen.

Really, truly listen.

To their fears. To their grief. To their doubts and guilt and regrets and questioning. To the part of them that feels like they've failed their children. To their anger and their rage at the injustice of their children's lives being cut short. To the urges of grief that make them feel crazy and abnormal.

Let those you love simply talk with you and be heard without judgment or false optimism. Don't try to fix it or to help them feel something different - just listen.

Listen and when you want to object to something they are saying, or inject your own thoughts, stay silent and listen even more.

Listen and then simply tell them that you love them and you are here.

FORGIVE
Here's the honest truth: For a while, your friend or family member isn't going to be a terribly great friend or family member.

They probably won't always show up for holiday celebrations or birthdays or fun outings. They'll probably forget your birthday and anniversary and other special occasions. They may not feel up to attending baby showers and children's birthdays or being around babies and kids at all (this particular thing might last for years).

In that first year after their child died especially, they will probably forget things you told them or make plans and either forget about them or cancel at the last minute because they couldn't get out of bed that day.

When you complain about every day matters like being tired or your child acting up or the annoying co-worker you can't stand, they may not engage in the conversation the way they used to or may tell you that you're overreacting. It's not hat they don't care about your difficulties, it's simply that what they've experienced is so overwhelmingly huge everything else feels small and meaningless in comparison.

So, when they can't be the friend or family member you remember or want them to be, forgive them. They're still learning how to navigate life after the entire landscape has changed - not unlike being dropped in a foreign land with no map and no way to communicate.

GET TO KNOW THEM
However long you may have known your loved one or how well you might have known them, be prepared to get to know them all over again.

The loss of a child changes us in irrevocable ways.

Your friend or family member isn't the person they once were and they will never fully be that person again. Grief has forged them into someone new.

Don't be surprised if they don't respond to things the way they once would have or if they suddenly aren't interested in things they used to love or if the beliefs about the world they used to hold so dear are ones they cannot abide by anymore.

No, they won't be the person you remember and loved so very much. Grief will change and morph them into someone new - and even that will change and morph again over time.

But don't give up on them too quickly. They may not be the person you knew, but you might really love the person they have or are becoming.

Take time to get to know the new post-loss them.

REMEMBER
Finally, if you do nothing else, remember with them.

Help them remember their child through the years and comfort them with the knowledge that their child has not and will not be forgotten.

Share memories with them. Say their child's name. Remember their child birthday. Honor them on the holidays and for Mother's and Father's day. Donate in their child's name. Read articles like this one and discuss it with your friend or family member.

Give your loved on the gift of remembering their child. It's the greatest gift you can give.

And above all else, love them. Love them so deeply and openly and clearly they can't help but feel it radiating from you.

They need you and they need that love.

Love them fiercely.


Tuesday, June 13, 2017

Moving On Up

This week has been a lot of good stuff. Finals Monday and Tuesday.  Wednesday was the 8th grade trip for a National Harbor boat ride on the Spirit of Baltimore; lunch, dancing, and picture taking.


On Thursday was rehearsal and awards ceremony. Becca was nominated for the The Treuchet-Crumbaugh Citizenship Award which is giving to students who display an altruistic character, consistently helpful and is an "all around good student". The 8th grade teachers nominate students and then the faculty picks one boy and one girl. From the 400 8th graders, Becca was one of 37 kids nominated...Becca and her friend Jake WON the Citizenship Award. We were shocked and thrilled. Her reaction when she went to receive her award was priceless. It was an exceptional day celebrating her.



Friday was the day, Promotion Ceremony, Moving on Up to High School. Hard to believe we were going to have a freshman in high school. It would be a bittersweet day, but one of celebrating Becca.