Friday, November 7, 2014


Many times over the years we have heard you are an inspiration, you are a hero. I don't feel like one...especially on a night like last night. Today was a rough day for Ian, he spent most of the day in pain. He got the it all  from his regular pain meds to his PRN pain meds, including the oxycodone. By the time the nurse was ready to leave he was doing well. At least until bedtime, however that is usually when most of his discomfort comes into play, unless it was a day like yesterday as we have noticed, the weather plays a major factor in his comfort and pain.

One definition of inspire it to arouse (a thought or feeling) in (someone), inspiration is an inspiring or being inspired mentally or emotionally. A hero is a man of great courage, nobility, etc. or one admired for his exploits.
I don't feel like those things...for me/us we are taking care of our family, raising our children. But we have to do things that most parents don't have to do in caring for their children. I would like to think that if you needed to you would do it as well. Last night was one of those difficult emotional ones. You could tell that Ian was extremely tired which made it more difficult to understand him but he managed to get out what he needed to. It is usually bedtime when Ian decides to share the emotional things...he gets that honestly...right Brian. He said he was sad, sometimes he knows why and other times he does not. He did not know why he was sad but had some questions about Heaven. He asked how someone gets to Heaven. Well I have to say that is one question I had not gone thru in my head to have to answer and I don't remember what I told him. I preceded to tell him that when he is ready to go to Heaven it is okay to go and we will be okay down here. Just like a true pre-teen, he wanted to know if they have TV and popcorn in Heaven, my response...they have anything and everything there. I got a little smile from him then and he told me that I didn't have to worry he would be fine in Heaven. He continued with a few other things about Heaven, all the while I am starting to cry. Ian looks at me and says don't's okay. I asked him if sometimes he felt torn between here and heaven and he said yes (I had never thought of asking him this until I had a conversation with a friend who has lost her son), so I cried a little bit more. He again told me not to cry that we would all be okay. He is so much wiser then his 11 ways he should never have to be. I told him that we loved him with all of our hearts...and he ran down the list of making sure all of us in the house really do...Daddy he asked, yes I said, Becca he asked, yes I said, Joey (that's our dog) he asked, yes I said, and you he asked, yes I said. Finally we got him to stop talking and realized that he was beyond tired and needed to try to go to sleep. Once the nurse got to the house and took over for Ian, I lost me I am not a hero or an inspiration...I am taking care of my ways I never imagined. Watching him grow weaker and incure more pain as days go on but at the same time watching him grow into a wonderful person who is wise beyond his years. Watching him play games with people, play tricks on people, watching him try to scare people...all the things an 11 year old does....we are watching our children us they are the inspiration and the heroes.


chickma said...

You and Brian must be exhausted. You are not heroes, you are loving parents and that is WAY harder than putting on a cape for a couple of hours a day! You are always there to answer the hard questions, to make the hard choices, and to provide Becca with a "normal" life. Way harder than being a hero for One do it every minute.
When Liz died we did not have the opportunity to say goodbye or to tell her again how much we loved her. I know it is hard right now but you are in the right place at the right time. I am sending you all the love and strength I can.

Marci Scher said...

Thank you for your comment and letting me know we are not alone. I am very sorry to read about your Liz.

Anonymous said...

Marlene Ettlin ⭕❌πŸ’œ❤πŸ’ž

Alicia Katznelson Broth Ian absolutely is an inspiration, but so are you, Marci. I don't think you realize what a positive effect you have -- of course for Ian and your family but also on friends and the larger community. {{{hugs}}}

Danielle Houseal I think all four of you are an inspiration. :)

Marcy Schwab Beautiful, Marci. Truly.

Annelise Sullivan Wow. Tears, truly. Selfishly, I hope he continues to choose here over heaven. (At least for now)

Sonia Losinsky Barav Beautiful

Tamara Jayne Flax Beautifully written!

Jamie Leboe Beautiful!

Julie Onnembo You are all heroes and rock stars in my book. I wish I could reach through these cyber waves and give you a big hug. For now I will settle for sending you prayers and positive vibes and hope that you know we love you all so much!

Jay Weiner You are right that you are "just" doing what you need to do for your family, and that any of us would do the same--but I think why so many of us use those words in referring to you is that we're not sure we would do it with the same apparent grace with which you are, nor that we would share so freely of ourselves in the process.

Amy Eisenberg Samay It is with the spirit you all do this that inspires everyone so much. As we'll as the effort you put into your blogging and work towards rare disease awareness. The way you and Brian make it a priority to maintain as much normalcy for Becca inspires us too. She is so happy and resilient in class. The way she reacts to the middle school trial and tribulations of her peers cracks me up every day. She has so many of your mannerisms and personality; I know eventually I will accidentally call her Marci.

Samantha Gitli Schaefer Marci, what a beautifully open and heartbreaking conversation. Ian is such an incredible young man. All of you inspire in ways you may not realize.

Stacy Berman Lunenfeld Your whole beautiful family is an inspiration to us on a daily basis. We are always thinking of you.

Susan Weinberg Lewis As your sister, I know how amazing and inspirational you ALL are. I could not be prouder of you and how you have managed to handle all that life has given you and how you have chosen to be so open about this disease to help educate our community. What a role model for Boo. What is almost as equally humbling to hear and see is how many people see your beauty, grace, love and strength. I love you, Brian, and my superheroes, ian and Boo. Xoxox

Sara Alima Ostrow You all are true hero and an inspiration to all. It's not what you do because as parents we always do what we have to, but it's how you do it-- with such kindness, compassion, and love for both Ian and Becca. Hugs to you all.

Michelle Bar-av Beautifully written cousin. I love you!

Sherie Bober Rubin You inspire and you don't even realize. That makes you a hero😘

Michelle Kampler Schwartz Oh Marci. Hugs. G will be there to catch day.

Susan Weinberg Lewis Michelle Kampler Schwartz... Catch him and hold him ...

Jodi Postol Marci Weinberg Scher, check out heaven is for real for kids. I think Ian May like to hear the story and it may be comforting for him. I read the regular version which I enjoyed and found some comfort in personally.