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Monday, December 26, 2016

Without Ian

Many things have come and gone since September 15, 2016. The Jewish High Holy Days, our anniversary, Brian's birthday, plus more...and now we are in the middle of Hanukkah. All hard days. We have taken all of them as they come. As people say the first of everything is the hardest, and since we are still amongst the first all I can say is they have sucked. 
Becca, Brian and I just got back from a cruise to Cozumel. It was nice to be away but emotionally hard with ups and downs. We all had our ups and downs and did a good job of sharing with each other. Being on vacation without Ian was hard...thinking that he should be with us. Trying not to feel guilty about having a good time, but realizing that our feelings are real. We went snorkeling in three different reefs and it was very relaxing, seeing the fish swimming around did make me think of my fish (Ian loved to swim). We had two days at sea, laying at the pool was hard some of the time, my mind kept going back to the Thursday Ian passed....I let myself have those feelings as I am hoping they will help me with the grief process. Sitting in the dinning room for dinner had its good and bad, we had some good laughs with Becca but also seeing the empty chair was hard. Isaac did make his appearance on the ship for the the 1st two night of Hanukkah and wanted to be a part of towel animals. 



We also had family photos taken on the ship, that was something we struggled with having done but decided we needed to have memories of our cruise. I didn't want to regret not having them.  I did buy shirts from Global Genes, Care About Rare for us to wear for them...

After the cruise, we went to spend some time with Nana and Poppop (Brian's parents) in Flordia. Low key. We went for a nature walk, got caught in the rain and saw a rainbow.  Plus we saw an alligator eating a turtle...

More trouble by Isaac...


Chai Lifeline set up a Yacht ride for us....so relaxing and calming...




It was beyond...the views were spectular. Becca loved it....thanks Chai Lifeline. 

Our time away has come to an end...but doing things without Ian has not, unfortunately...we continue to each grieve in our own way, taking everything one day and moment at a time. 

Wednesday, December 21, 2016

A Lasting Impression

This was the status update I put on Facebook:
So I was messaging with one of Ian's first Camp Simcha Special nurses the other day and she mentioned how much he touched her life as well as so many others....regardless of knowing him personally or through my words on the blog, it would mean a lot to me so please share how Ian or our family has touched your life.

Replies:
Karen Unger Frazier I met Ian long before I met the rest of you.. He was at Reistertown elem in a class I'd frequently work in. He stole my heart from day one. I was surprised and happy to see him come to Chatsworth. From there the relationship grew and my kids came to love him like I did!

Heather Lev Oh boy, where do I begin.... in 2009 when the kids were in first grade is when we connected for the first time. Ian was in the walker and I couldn't help but fall in love with him. So of course since I wouldn't share my boyfriend with Bethany, who is in the same grade as the twins, she and Becca latched onto each other. They haven't let go ever since. In 2010 at the end of the year picnic we sat down to talk while the kids were playing. You were explaining about what was currently going on with Ian. At that point you didn't have any real diagnosis. I suggested to start blogging his symptoms. That maybe someone else is going through this too and needed help. That you can spread the word to guide you and get your thoughts and emotions together. Well, guess what, not only did it give you a chance to document what was going on but it helped the community, which you call your village, understand more, but it reached out to other families dealing with similar issues. You have connected so many people. Your openness for needs and wants, your bravery, your strength runs through all of us. By the way, "Your" refers to Brian, Becca, Ian and Marci Weinberg Scher. Becca over the years has joined my family as our 3rd daughter and I wouldn't have it any other way. We have been through so much together as families. Our lifes our better because of all of you. Cluck, Tongue, Smile forever in our hearts!!!! We  you!!! XOXO



Melissa Hicks Willen You know when you first meet someone and for unexplainable reasons you just like them instantly? That was how I felt when I met you. You are so genuine and down to earth and I loved hanging out with you in that tiny little waiting room at Karen Sachs. Ian would entertain us with that look of mischief in his eyes as he ran around trying to get away from all the girls. Your family has taught me to never take anything for granted and cherish every moment. I love you!

Erin Abrams Schiff Your strength through all of the good and tough times. I miss seeing you Saturday mornings.

Hilary Grissom Cummings Your strength Marci....I am in awe everyday of it and you 
Carrie Levin Weitzman You've touched my family be sharing your personal journey. Your honesty about the ups and downs of your families lives has served as a reminder of the fragility of life and the need to live life to its fullest!




Lauren Agetstein I don't know what else to say other than I loved reading about him and the rest of your family even 3 months later I love reading your posts/blogs how you all survived from day to day.

Adina Levitan I met Ian when I was in high school. From the first moment I met him, his smile was infectious and his spirit contagious. He embodied what it meant to be a kid- to always want to play. Whether legos and video games, or an impromptu football game, he was always looking for fun. Throughout the years knowing Ian, he always melted my heart with his sly smiles and silly stuck-out tongue. To be honest, he was the perfect boyfriend- he let me paint his toenails and put frosting on his face (more than once!) (Pretty sure 99% of our activities involved some kind of mess... Sorry Mama Scher) Ian lived a fun and playful life and I am so happy I got to be a part of that. And the Scher family as a whole.... wow. I have never, ever, ever, met two stronger parents and super caring sister. The way you look out for each other and look out for others. I feel so fortunate to know you. I think of Ian often- every time I see Spiderman or even just on a random moment- he is in my thoughts. Miss you much my hero.

Arlene Brown Stein I remember seeing Ian going down the hall at GECEC every day (I don't know how old he was maybe 2 or 3?) he always had a beautiful smile and a twinkle in his eyes. After I moved to Fl. we became friends on FB and I love seeing pictures of your family and reading your blog. I also think of Ian whenever I see Spiderman, I probably always will. Be well hope 2017 brings your family only happy wonderful days.

Steven Rosensweig I just want to say how Ian,Just like the other kids that come to MWPH always touched my life,When you and Brian would bring him in for his therapy,and how he had that beautiful smile and would be ready and able to take on his therapy and whatever else he had to undertake to make him better! And I also have to say how you and Brian have touched my life and my niece,and your friend,Leslie Kapper Sands,With your strength and courage to go through with what you had to go through and your determination to get through A very tough period in your lifetime! God Bless ,both you and Brian,And always know that you both are always in my prayers,And I hope the next year,2017,brings you and Brian a much better year! I wish you both a Happy,Healthy new year!

Shelly Thompson I don't know if we would ever have gotten a diagnosis for Sam without your help. In the midst of everything you had going on you so selflessly gave of your time and energy to help us. I can't really put into words the gratitude I have for you and your family. Thank you isn't strong enough. I love to read your blog and see your posts about your family. Your honesty and strength encourages me!

Shlomo Deutsch His tongue. That's all it was. One of the only movements he was able to do. But that's all it took, because when he stuck out his little tongue, everyone in the dining room in Camp Simcha Special would jump up with their tongues out and go crazy!! It just comes to show how little it takes to make someone's day, to make someone smile.

Alan Guttman If only all of us could bring out the best in each other the way Ian could. I was there when he threw out the first pitch at an Orioles game. He gave all of us those opportunities to do good, to be good, to be more caring, and to give our all because he always gave his all.

Deana Munchow As Becca's 6th grade teacher, I decided to follow your blog so that I could use that information to help me with my interactions with Becca. Even though I never met Ian personally, I was so amazed by your family's strength. I followed a small part of your family's journey and it helped to teach me how to be a better parent and to let go of relatively unimportant things in life. Your ability to let your medically fragile child go away to camp was so inspirational to me because I have such a great fear of loss that I have trouble letting my own children do things independently. I saw the joy on Ian's face in the pictures and I know he deserved to have fun. I sent Xander to day camp this summer and it really was a big deal. Thanks for being such a strong mom!

Stacy Berman Lunenfeld I met Ian when we were both pregnant. Then again when he had speech with Justin and again in scouts. What a sweetie. Always with a smile on his face. I always loved seeing Brian with him being the scout leader and treating him like a "normal" kid. The four of you are the strongest family. Justin has learned so much from Ian and his strength and positive attitude.

Erika Agetstein Buchdahl Too many ways to mention. Plus I'll start crying again ..... heart, soul, love, smile.

Jay Weiner So, I only met Ian once, at his Bar Mitzvah, and I hardly know Becca or Brian all that much better, really. But I feel like I know all of you that much better through your blogging. Your blog gave me insight into Ian, into your family, into so much of what chronic and terminal illness can "teach" us if we are open to it. Your writing helped me, and still helps me, to grow, both as a person and as a physician.

Now, beyond that, you know the bond that you and I now share, prior to recent developments but even more so now. And you know how very much our friendship means to me, really beyond what I am able to express. I am so grateful that we have (re)connected, and grown our friendship, over these past few years. Outside of my Deb, you are my most important sounding board, the voice of experience that I desperately wish you did not have, and you are a huge part of what keeps me sane on a regular basis now.

I cannot imagine my village without you in it, Marci, and I "love" you more than you know.

Gia N. Paige Your family has touched me deeply because you shared a very personal and intimate part of your lives. As I walj with my sister on her journey with my nephew I often refer to your blog for a word of wisdom or an ounce of strength to help her though the day or sometimes the next minute.

Jennifer Larsen Orlando I only met Ian once when all of our kids were so young. He was so happy and his laugh was contagious. As I have followed your blog, I was inspired by how strong Ian and your whole family was/is. Love you all .

Robyn Stevens Brody Without giving it much thought, we were able to reconnect through preschool and Hebrew school. Ian always had a smile on his face from ear to ear, even on hard days. Leo would be very concerned when Ian would miss religious school. Ian gave us an opportunity to both reconnect as families and help my children better understand their feelings of caring through their friendship.

Ariella Bernstein So blessed that I got to meet Ian through Chai Lifeline- at the color run and at his own Bar Mitzva. Although I personally never spent one-on-one time with Ian, I heard so much about him through my brother and other Chai Lifeline friends. They always talk about his smile and his spiderman obsession. Ian moved me; when I think of him, I think to smile and to believe in a little imagination.

Danielle Houseal Courage through hardship. 

Chrissy Bosley Peters Ian and your family touch me every day when I think of one of you and I often do ... Ian and his family are special people the love unconditionally that's what they have taught me

Rachel Schreiber Levitan I met Ian when he was in GECEC and I worked at Chizuk. The cutest boy with the tiny voice. I watched his mama go tiger and fight for his every need and succeed in maneuvering the healthy case system to give Ian the card he needed, and to give both Ian and Becca the most amazing choldhood, full of memories and photographs to cherish forever.

Julie Brandt- Crumbacker So, I was only met Ian and few times, thru Boy Scouts thru my nephew .... but your blog about family, love and devotion was a touching reminder of the blessings of motherhood . Marci, you are an amazing mother and your twins are and will always be your greatest gift. Wishing you and your family peace during this difficult first holiday.

Michelle Kampler Schwartz Ian and your whole family have enriched my life. Ian taught me about patience...and of course computer games!! Xxoo

Amy Sody-Dardick We met Ian when Andrew became involved in The Friendship Circle while he was a junior at Owings Mills High School. Andrew would come over once a week to play with Ian, playing with cars, reading books , doing puzzles or playing video games. It was just...See More