Wednesday, March 29, 2017
I used to think you left me. I know better now. You come to me. Sometimes in fleeting moments I feel your presence close by. But I still miss you. And nothing---no person, no joy, no accomplishment, no distraction, not even G-d---can fill the gaping hole your absence has left in my life.
But mixed together with all my sadness, there is a great joy for having known you. I want to thank you for the time we shared, for the love you gave, for the wisdom you spread.
Thank you for the magnificent moments and for the ordinary ones too. There was beauty in our simplicity. Holiness in our unspectacular days. And I will carry the lessons your taught me always.
Your life has ended, but your light can never be extinguished. It continues to shine upon me even on the darkest nights and illuminates my way.
I light this candle in your honor and in your memory. May G-d bless you as you have blessed me with love, with grace and with peace. Amen.
Monday, March 20, 2017
"My friend just died. I don't know what to do."
A lot of people responded. Then there's one old guy's incredible comment that stood out from the rest that might just change the way we approach life and death:
"Alright, here goes. I'm old. What that means is that I've survived (so far) and a lot of people I've know and loved did not. I've lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can't imagine the pain it must be to lose a child. But there's my two cents.
"I wish I could say you get used to people dying. I never did. I don't want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don't want it to "not matter". I don't want it to be something that just passes. My scars are a testament to the love and the relationship that I have for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can't see.
"As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hand on for a while. Maybe it's some physical things. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.
"In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over your and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, these is life.
"Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come of the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.
"Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks."
Wednesday, March 15, 2017
Thursday, March 9, 2017
What to do with Ian's shirts, for a boy who rarely left the house he sure had a lot of them. We decided to have a memorial quilt made with some of them. Brian, Becca and I went through them looking for the ones to make the perfect quilt.
Starting at the top right corner as square 1 and working across....
Square 1 was his Camp Simcha Special shirt from 2013, his first year there. Who would have thought just 6 months after coming home from his longest hospital stay and getting trached, he would have gone to sleep away camp 5 hours away from home. Camp Simcha Special became one of his favorite places where he met some of the most incredible guys, including Danny Trestman and Dovid Troub.
Square 2 was his Orioles baseball shirt. He went to a few games and would usually make it to the 7th inning stretch.
Square 3 was his Camp Milldale shirt. He went there for 4 years in their inclusion program and had 3 wonderful counselors. They helped to make sure he did other things with his bunk mates. This was the 1st place we heard of Chai Lifeline as Camp Milldale did a swim-a-thon to raise money for them.
Square 4 was his shirt from playing baseball. A League of Dreams provides all individuals, regardless of physical or mental capacity, through opportunity to experience the joy, challenges and personal growth from playing the great games of baseball and softball.
Square 5 was a tie dye shirt he made with Adina Levitan through Chai Lifeline. He made a matching one for his big brother, Jared Hurwitz.
Square 6 was on of his motorcycle shirts. Ian loved motorcycles and a good ride. In fact, he was an honorary member of 2 clubs, MVC and the Lonsmen. He went on 2 motorcycle rides, one with each group.
Square 7 was the shirt he wore for his tallis ceremony. On June 8, 2014, Becca and Ian had a ceremony where they got their talises. Usually, they are received at ones Bar/Bat Mitzvah, however, we decided the twins to get them early during a special ceremony.
Square 8 was one of his Spider-Man shirts. It says "I'm not Saying I'm Spider-Man, I'm just saying you haven't seen us together."
Square 9 was his Camp Simcha Special helicopter shirt. One of the highlights for Ian at camp was the helicopter ride they went on every year. He would always come home from camp and tell us all about this ride.
Square 10 was his Give Kids the World shirt from his Make A Wish trip in November 2010. Give Kids the World is the village for wish families at Walt Disney's World in Orlando, Florida. Everything in the village is accessible. We had a blast there as well as at all the parks. Especially Universal, where Ian's wish to meet Spider-Man came true.
Square 11 was a shirt from the 4-H Therapeutic riding program Ian participated in for over 3 years. He rode Smokey for his years riding. He especially liked Halloween at the barn when the horses all got dressed up as well as earning all his riding ribbons.
Square 12 was his Bike 4 Chai shirt through Chai Lifeline. Every year bikers would ride bikes for 2 days to raise money for Chai Lifeline where the finish line was the greatest place on earth, Camp Simcha Special! Each year one of the riders would look for Ian and give him the medal he got for making the ride. Ian came home from camp proud of his medal and eager to share it with us.
Square 13 was a shirt from his cousin, Josh's Bar Mitzvah. His name was air brushed on.
Square 14 was his Chatsworth 2015 shirt. This has all the names of the 5th grades who moved up to the 6th grade...Middle school. If you look closely, you can see his name between the horses hind legs.
Square 15 was his soccer shirt. The signatures on the shirt are from two Baltimore Blast players when his adaptive soccer league went to a game one night. His league even got to walk on the field in a parade before the game started.
Square 16 was his Zaching Against Cancer shirt. Zach was another Gilchrist Kid who lost his battle to cancer. The way the person is holding their arms in the shirt became Zach's moto.
Square 17 was Ian class B cub scout shirt. He started scouts when he was a tiger (1st grade). He continued for another 3 years. He made a lasting impression on pack 143 as well as they made a lasting impression on him.
Square 18 was a one of the few shirts we had as a "twin" shirt. A Nice Jewish Boy....that is exactly what Ian was. Becca's matching shirt was pink and said Nice Jewish Girl.
Square 19 was his Never Give up shirt from the Gwendolyn Strong Foundation. Each one of us had one and we spent a day getting wonderful family photos while wearing our shirts.
Square 20 was his Spider-Man shirt which came from Isreal. The Hebrew in the bottom says Spider-Man. I think it came from Josh on one of his trips to Israel.
Square 21 was his Ravens Hebrew shirt. Again the shirt came from Isreal, but I can't remember who it came from.
Square 22 was a Spider-Man shirt. He had many Spider-Man shirts but this is the one we chose to put in the quilt.
Square 23 was his Spider-Ian shirt. This was air brushed while at a friends bat mitzvah.
Square 24 was one of his Casey Cares shirt. Casey Cares is an organization which provides ongoing and uplifting programming to critically ill children and their families. Ian and Becca did many different things through Casey Cares, such as going to the circus and Ian throwing out the 1st pitch at an Orioles game.
We aren't sure if the quilt will actually get used for fear of it getting ruined. But we do know it will be one more thing we hold on to and cherish for many years to come. Hopefully one day we will pass it on to Becca for her to keep and cherish.
Wednesday, March 1, 2017
We partnered with Global Genes to find out what the rare disease community wants others to learn on World Rare Disease Day. These are the lessons that can help people understand why awareness of rare diseases is so crucial.
Here's what the community told us:
- "Genetic testing needs to be more accessible and less expensive. Sometimes it is the only way to get a diagnosis. Even if the diagnosis is difficult, it's better than not knowing."
- "Research is crucial. Not only can it lead to treatments but it also helps raise awareness about each individual rare condition. This, in turn, can reduce the wait for a diagnosis and reduce the number of misdiagnoses people receive on their diagnostic odyssey. To me this looks like a win/win/win/win/ scenario."
- "The disease is rare but the human needs and dreams are common. Every patient has the right to live no matter how small the number is. The support for rare disease in many countries are little because the number is small, but when each disease comes together, it is not so rare."
- "Early diagnosis and early intervention are essential. There have been such incredible advances in genome sequencing, doctors need to think zebras when they are not sure what's going on with a patient. My daughter was diagnosed and started treatment at 14 months, the average child waits years for diagnosis."
- "Invisible does not mean nonexistent, a good day does not mean cured and a long-term fight for a family requires reserves that can sometimes be misunderstood. We do the best we can and at the end of the day, we are are loving our children and trying to live our best lives possible, too."
- "I know it's natural to be curious, to stare, but please smile, say hello. They are people, too. They may not see, hear or know how to respond, but their caregiver, loved one or friend will help spread awareness, knowledge and kindness in return."
- "You may not fit the criteria of a rare disease but you can still have it. I had a disease when I was 2 that is rare but is more common in boys and Asian ethnicities. I don't have any Asian background and I'm female but still had it. Don't let misdiagnosis settle with you."
- "Even if we have a diagnosis, it doesn't mean we have all the answers. Rare can mean there aren't many (or there isn't any) studies, information or treatments"
- "The act of listening seems simple enough, but many are never heard when sharing or explaining important information regarding their rare disease. It is a daily struggle to have someone partially understand or relate to how and why a rare disease can be difficult to live with. Especially when on the outward appearances you look normal, or people perceive you to being healthy."
- "We need more specialists and doctors to take interest in rare disease."
- "You don't have to completely understand in order to be supportive. People with rare diseases can often feel alone, isolated, afraid. The tests, procedures and treatment are so hard to go through. I want people to learn to do something. Show up for your friends and family. Seek to understand what they are going through. Offer to do things like drive to doctor appointments, make a meal, clean the kitchen. Isolation is so common with people with rare disease - when you find out someone is going through any part of the process know that they are fighting so hard - harder than you could probably ever imagine."
- Doctors - don't blow us off or tell us it's 'all in your heard.' I have a rare disease and probably know more about it than you learnt in medical school. Listen to us. We can teach you a thing or two."
- "If you're interested in learning about the disease, please ask. Googling only scratches the surface and what you will find out is so very pale in comparison to the reality."
- "I'm really not that different. I want many of the same things you do. I want to be included in group projects and discussions. I really am more like you than not."
- "Some people never get a diagnosis. That doesn't mean we're making up our illness; it just means we don't know what is causing it."
- "Not every rare disease presents in textbook fashion. My rare disease looks nothing like what even generalized medical practitioners are familiar with seeing or hearing of from textbooks. That doesn't mean I don't have it or I'm doing really well with it and those statements completely invalidate the pain my disorder causes."
- "We were all - at one point - undiagnosed. Rare conditions are often harder to find and don't necessarily show up in standard medical tests. Please don't be so quick to suggest that our symptoms are somatic."
- "Being unique medically is hard. Every day there are a thousand adjustments to operate and achieve at the same level as everyone else."
To me, rare disease means a mutated gene on my daughter's chromosome 15. A gene that we all have but in her case, her's doesn't work. It means very little answers followed by a whole lot of concern. It means a handful of wrong diagnosis until we found the main cause. It means speech therapy three times a week, it means chronic pain and delayed intellectual abilities. It's fighting through life for things she needs at whatever the cost.
Rare means spending a lot more money on medical expenses than the average person. It's about having a glimmer of hope that something might make a difference in your child's life, because no one can say for sure either way.
Rare to me means spending a lot of time in the car driving miles to seek medical care, because not every city and state has a doctor that understands rare. Rare is a long list of symptoms that as a parent you wish you could just sum it all up with a proper diagnosis instead of a gene no on has heard about.
Rare is scary, it's isolating. It's getting up every day and wondering how will my child feel today. That magnitude of worry is consuming. With every breath I take I inhale and exhale her rare condition.
Rare is the dark circles under my eyes, it's sleepless nights and the cause of my insomnia. Rare is the lack of funds in my bank account, it's the silence in the air that at times I only hear. It's the cause of my wrinkles and the reason for my constant state of brain fog.
Rare is what comes between my daughter and the world, it limits her. Rare has flipped my world upside down and forever changed me. It keeps me on my toes, it keeps my searching for answers.
Rare finds a way to be acknowledged even during the happiest of moments. Rare will keep your eyes posted to every genetic study being done in hopes that maybe, just maybe, today might be the day someone can help take away her pain.
Rare will put into perspective just how big this world really is and remind you that you really are one-of-a-kind. Rare is living with uncertainty, rare is trying to ignore that last scientific study that was done on your child's mutated gene, the one that showed brain deterioration in mice. Rare is hope, it's humbling, it will slow you in your tracks. It will change the way you look at the world and science and realize just how amazing it all is, but how far we still need to go. You will realize you knew nothing about the human body because if you did, then you would know that some genes cause devastating affects.
To me, rare is my beautiful daughter, it's her sweet smile. It's her determination to succeed. It's her bravery, her generous personality. It's her curiosity, it's her contagious laugh, her big bright brown eyes which are the first things you when she walks in a room
Understanding my daughter's rare condition is the hardest but best thing I've ever done.
Rare is everything that's wrong in my life, but at the same time it's everything that's wonderful in my world.
We continue to be grateful for all of those who support us. Knowing that Ian will always be remembered is just one of the many ways we continue to get through our days. We continue to have ok days, bad days, and horrible days. I am not sure if the good days have come yet so for now we take the ok days when they come. We know that Ian would want us to continue living and that we are trying our best to do. I have learned there is no way to fix this so I just move forward trying to embrace it as best as I can. Rare disease day is every day for us...thank you all for wearing "Jeans" for genes to raise awareness for rare diseases.
|Jenn Orlando - For Ian 💙|
|Alyssa Fraizer - Wearing jeans to for rare disease day 2017!!!! Miss your smile Ian!!!!!|
|Beth and Bree Hackerman - Rare Disease Awareness Day!!! WE CARE!!|
|Michelle Bar'av - Wearing blue today in honor of my cousin Ian and rare disease day. I love you Marci Weinberg Scher, Brian and Becca!|
Julie Onnembo - I could only get my feet and legs but still sporting the jeans today. Love you!
|Heather and Marty Lev - Rare Disease Awareness Day!!! WE CARE!!|
|Gregg Levitan - For Ian, Marci Weinberg Scher|
|Bree Hackaman and Amy Samay|
|Erika and Sarah Buchdahl - All about Ian today!|
|Michelle Levine Davis Wearing jeans today for Rare Disease Awareness Day. In memory of my Sigma Sister and Friend's son Ian who lost his battle with a rare disease last year at the age of 13. Love you Marci Weinberg Scher 💜💜💜|
|Jenn Firsch and Alyssa Fraizer - We are rocking our jeans today to support Rare Disease Day in honor of our friend Ian who lost his battle earlier this year. We miss you and are holding tight to our string. Marci Weinberg Scher Brian Scher and Becca you are in my heart everyday.|
Heather Smith Macchia - Today, I am wearing my blue jeans for Rate Disease Awareness Day in memory of Ian Marci Weinberg Scher💙
|Julie Kaplan - Wearing my blue denim Genes Ribbon in support of Rare Disease Day and in memory of my cousin, Ian Scher.|
|Marci Weinberg Scher. In support of rare diseases and in memory of the Amazing Ian Scher. <3 span="">3>|
|Kenzie Lewis - Today I wear this ribbon for rare disease day. Something that is very close to my heart. Today I wear this ribbon for my superhero, my cousin, my best friend, Ian. I wear this ribbon in memory of him, and for all those who have a rare disease.|
|Kenny Culberston - Sporting my jeans and ribbon today to celebrate Rare Disease Day in memory of Ian Scher, who left this world too soon. My deepest sympathy goes out to Brian and Marci Weinberg Scher and the rest of her family. Prayers go out to everyone who is or knows someone who is suffering from a rare disease. #Nevergiveup|
|Josh Lewis - Ribbon and jeans for Ian today|
|Lilah Henderson - wearing Blue for my hero|
|Jodi Postol - It's World Rare Disease Day, and I've got my jeans on in memory of Ian. I know he is smiling and sticking his tongue out at all of us today with pride.#rarediseaseday Marci Weinberg Scher|
|Jill Pelovitz - Today on World Rare Disease Day the Pelovitz Family is wearing jeans for Nadiya and in loving memory of Ian Scher.|
|Susan Lewis - In memory of my superhero, Ian, and in support of all those that suffer from a rare disease, everyday.|
|Cheryl Snyderman - This one's for you Ian! This year and every year on Rare Disease Day. And Ben - this is for you too! BTW big guy - awesome jumping into the pool!!!|
|Chizuk Amuno Ladies|
|Melissa Randazzo - Wearing my blue jeans for Rare Disease Day. For Ian the Superhero and for me. Spreading awareness|
|Kelli Maples Bethel - Supporting Rare Disease Day, Marci Weinberg Scher, and Family, sending lots of love!|
|Rivky Flamm and Tzvi Haber - Chia Lifeline thinking of Ian today and every day!|
|Lesley Brinton - Rare Disease Awareness Day. We care. — with Marci Weinberg Scher.|
|From middle school through high school Kayleigh has helped her student councils raise money forRare Disease Day, by encouraging girls to donate so that they may wear Jeans for Genes instead of their school uniforms. This year was bittersweet as we remember our friend ,Ian. Thinking of you and sending lots of love, Marci Weinberg Scher andBrian Scher! Pictured is the Sophomore and Freshmen classes at Mercy High School,|
|Lara Fruman - Wearing jeans today in honor of many, especially Ian ❤ with Marci Weinberg Scher — with Leanna Diffendal, Brooke Fruman, Penny Glickman Lippman, Amanda Fruman and Marci Weinberg Scher.|
|Alyssa Postman - The last day in February is pajama day at school, so I didn't get to take a picture in jeans. But today is still Rare Disease Day, and so in Ian's memory I'll post a photo of my favorite super hero instead, from around the time I worked with him at Milldale, when he and his family began to teach me about what strength and super powers really mean.|
|Connie Berman - Wearing my jeans for rare disease day. Remembering Ian. Xoxo|
|Allison Friedman - Wore my Denim jean shorts today... Lots of Love to one of the best families i know! #RareDiseaseDayMarci Weinberg Scher Susan Weinberg Lewis Kenzie Lewis|
Bryna Bernstein - Marci Weinberg Scher- Michael and I wore our ribbons today in honor of Ian and Rare Disease Awareness day. Sorry no picture.
|Irina Goldsmith - Wearing jeans to honor Ian and commemorate rare disease day.|
PS... She hates jeans normally but wore them happily today. Lol
|Lisa Smolen - Drew and I proudly wearing our rare disease ribbons in loving memory of Ian Scher and everyone else who is battling or knows someone battling a rare disease💙 — with Marci Weinberg Scher.|
|Melissa Willen - Wearing jeans for Rare Disease Day and Ian. With Marci Weinberg Scher. xoxo|
Nuchie Zirkind - Thinking about your beautiful family, and Ian today. I don't have jeans, but we gave extra charity in his memory. You inspire me every day!
|Bethany Hackerman - In honor of Ian ,my friends and I wore our denim ribbons. Here are a few pics of those who wore them but there were many more who did. It's just great that even though there are some that didn't know Ian or anyone with a rare disease but they asked what the ribbon was for and I told them and they were like can I have one . See that is how fast the support can spread. Miss you Ian. 😢|
|Leslie Malsbury Old - Even though you can't see our jeans, This is for Ian in honor of rare disease day. Marci Weinberg Scher|