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Friday, December 18, 2015

An Update

So I've been posting lately but not on how we are all doing. Over all we are holding our own. Taking everything one day at a time during a very hard time of year for people with neuromuscular diseases. Many people have asked how Ian is doing...over all ok. We have seen small signs of disease progression.  He is harder to understand, not in that his voice is softer, more in that he is having a harder time with certain words and letters. The "s" is the main one that comes to mind. Getting the words "side" and "yes" out have become difficult for him. I would say 5 out of 7 days he is taking a nap as well as going to sleep by 9:15 (yup that's early for him). He's also having a hard time with the loss of Joey, we are taking that one day at a time and helping him get through that.

Becca is doing well. Currently, her grades are 5 A's and 2 B's. She just had a math test and was the only one to get an A. So proud of her. Girl scouts is going well. About 3 months ago she started horseback riding, and last week she jumped for the 1st time. She was ecstatic and we couldn't be more proud of how she is doing. She seems to be handling the loss of Joey ok.

As for Brian and I, we are doing ok. That seems to be how I am describing everything, "ok". I guess when you consider everything we go through on a daily basis, we are doing ok. Can't be doing great,  afterall, we do have 2 pre-teens in the house, who both have the attitudes. All the while we are slowing watching one of them die...so we are doing ok.

As 2016 approaches, we will continue to do ok and grieve the things we need to as we treasure yesterday, dream of tomorrow but live for today.

2 comments:

susan cohen said...

You inspire me to be a better listener, learner, giver, and gratitude is an attitude!!

Marci Scher said...

Erika Agetstein Buchdahl ❌⭕❌⭕

Judy Schwartz But somehow there is still a smile
Marci Weinberg Scher Oh not always

Deana Munchow Wow. You are all so strong. <3<3<3

Debi Gersh Van Camp 💕 so good seeing you last week. (Even for 2 mins)
Marci Weinberg Scher And you. Hope everyone is feeling better.

Arlene Brown Stein glad Becca is riding and loving it. glad everyone is OK. thinking of you always.

Shara Freeman Thinking of you guys!

Leila Jamal ❤

Sandra Huller Absolute ❤❤❤❤❤😞🙏😃. I wish I had a hug emoji....❤❤❤❤❤

Harry Blacker Our thoughts love and prayers are always with u
Have a happy holiday
Marci Weinberg Scher Happy holidays to you as well.


Mindy Hammerman Lipsey I think of you often.... Back to when you asked me about the IEP process at Chatsworth elementary before you enrolled the kids
Xoxo
Marci Weinberg Scher Seems like yesterday

Linda Butler ❤

Audrey D Kline Sending hugs your way and hope there are at least a few days ahead with awesome memories made sprinkled among the ok days. Love you.
Marci Weinberg Scher Love you.

Anita Spivak Rozenel Keeping you and your family in my prayers..

Lauren Agetstein I feel like I have had a tough road over these past and current few months. You all are definitely tough as nails. You all are so #scherfamilystrong!!!!
Marci Weinberg Scher You are holding your own and will get better.
Lauren Agetstein I am doing better than holding my own. I hope that my x-rays will show that I am doing as good as I feel like I am doing that I can hopefully graduate from this boot into something smaller like an air cast or something. My tough road doesn't come anywhere close to yours anyway

Stacy Berman Lunenfeld I think of you all the time. Thanks for the update. Sending hugs!!

Kendra Bober <3

Tara Coles love to you

Donna A. Lewis <3 <3 <3

Sallie Brovitz-Palmer <3

Benjamin Levey Marci: thanks for sharing. I am inspired by your words and experiences.


Danny Trestman I miss my second family... Can't wait to see you guys
Marci Weinberg Scher We miss and love you.

Connie Rosenthal Berman 😘


Michelle Kampler Schwartz <3 <3

Marlene Ettlin ❤💟💜