Thursday, October 3, 2013

Treasure Yesterday, Dream of Tomorrow, but Live for Today

My facebook post last night....I HATE VRK1...what do you tell your child as they cry to you that they are disappointed in their body...Fxck it.

Last night we had a heartfelt and difficult conversation with Ian. He was in bed, I was finishing up his nightly routine, his face told it all...he as down. I asked him what was wrong, he said he was disappointed in his body and he wanted to walk again. My heart felt. I proceeded to ask him what else was going on, he just kept repeating how disappointed he was in his body. Ian told me he wanted to talk with Brian as well so in came daddy. Ian told us both how disappointed he was, we asked him if he wanted to continue to fight, he said yes. At the same time we told him that when he was ready to stop fighting that was okay. We reminded him that he can do anything he wants with the hands and legs of others. We asked him if that was okay, he said sometimes and other times it was hard not to be able to do what he wants for himself. Told him that we understood as best as we could. It took some time but we got thru it, at the end of our conversation, Ian told both Brian and I that when we were ready to give up and not fight anymore, it was okay. 

Thank you to everyone for your words of encouragement and support last night on my post. Remember: treasure yesterday, dream of tomorrow but live for today.

1 comment:

Anonymous said...

Mitzi Agetstein Spiegelman Speechless... Thinking of you!

Annelise Sullivan I know that had to have been the hardest conversation, ever. Tell Ian none of us will stop fighting for him until he stops fighting. Is he reading the book Becca is? Carrie reading it, too and absolutely loves it.

Shelly Thompson Thinking of you!

Tamara Jayne Flax Ian is a true fighter!

Marci Weinberg Scher Annelise Sullivan no he is not reading the book that Becca is reading but that may not be a bad idea. Maybe we could get it out of the library and read it to him.
Leslie Middleman Toll My heart truly hurts for you all for even having to think about having a conversation like that. I wish I had a magic wand.

Lara Wynne Wish it could be easier for you all. You have many people who feel your pain and wish we could do something to make it stop. xoxo

Lisa Goldberg Burgunder I'm so sorry Marci. No parent should have to have the conversations you have had with your kids.

Laurie Fox Schimmel That must have been such a hard conversation. Thank you for sharing your thoughts and letting us into your world. In my eyes, your entire family are super heros!

Stacy Berman Lunenfeld My heart is breaking for you and your family! I am always here for you. Thinking of you all!!

Melissa Werner Marci - I can't begin to imagine the feelings you and Brian and Becca have in these conversations with Ian. You all are pillars of strength and so gracious for sharing when it is so very difficult.

Amy Eisenberg Samay Marci, today in class I gave Ryan the book "Wonder" to give to Jenn for you. Becca may love it too because whole sections are told from the point of you of the sister of main character, who happens to be a 10 year old boy.

Marci Weinberg Scher Thank you Amy Samay

Amy Eisenberg Samay Meant to say "point of view"

Sara Alima Ostrow I think of you all often. You are all amazing people and an inspiration to so many.

Samantha Gitli Schaefer You are the strongest family I know. My heart breaks for the conversations that you have to have. I wish there was more we could do. Zach and I will try to come by again soon and spend some time....Zach has some new jokes to share with Ian. Has Ian ever listened to a book on CD? I listen to them during my commute each day, and I find it so relaxing to be read to. Maybe you can find some books that Ian would enjoy.

Connie McElroy Lippenholz Oh Marci! I so wish we were close enough to be there for you guys! My heart goes out to you all. As said above, you are an inspiration in the way you handle these difficult, unimaginable moments. Call whenever you need a long distance hug!

Michelle Kampler Schwartz Oh Marci. What a brave kid. (They always do know...) What amazing parents you are. Keep, keep hanging. Hold onto the good days and moments. They are treasures, as you know.<3 <3

Carye George Everett I am sorry you have such difficult talks in your house too. We had one tonight. It is just crushing to a parent when their child just wants to "be normal". I am here for you if you need to talk.