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Saturday, December 6, 2014

Next Steps and Decisions

Ian telling us he did not want to go to the hospital anymore and was OK going to Heaven threw us for a loop.  It pretty much knocked us down...hard.

Brian and I have had many conversations over the past few weeks with each other. We have also spoken with other parents who have lost a child, members on Ian's Gilchrist team, Becca and Ian. Trying to decide what our next steps could be while keeping Ian's wishes in mind as well as our wishes for him, Becca and ourselves as his journey continues has not been easy. These conversations have brought tears, laughter, smiles, as well as more tough decisions.

Medically Ian is stable. The changes we are seeing are with his outlook and enjoyment of things.  Ian being OK going to Heaven and not wanting to go to the hospital is a major shift. The smiles and laughter are not there as much, oh we still get them, just not like we used to. There are times when you can see the exhaustion on his face.

So what to do? We have decided we are going to try to care for him at home if/when he gets sick again. We have been given some more tricks for when this happens along with the knowledge that his Gilchrist nurse will be over to help us assess the situation and make decisions on what to do...continue treating at home or go to the hospital ....we will have to continue to take it one day, one minute,  one second at a time.

"For now, remember this: When you feel low on smiles and you feel it’s over before you’ve had a chance to begin, dig deep and remember your purpose. Laugh loud, live in the moment and dream big. And most of all, remember you matter in this world."

6 comments:

Reva Suffel said...

You are an amazingly strong and outstanding family, sharing your strengths with the outside world. May all of Ian's days bring him peace and whatever the future holds, may each of you find joy in every moment you have with one another and be proud of what an example you have set for others.

Michelle said...

Hugs and love <3 <3

Anonymous said...

Laurie Fox Schimmel So well said! Keeping you and your family in my thoughts!xo

Jay Weiner Love you.

Karen Unger Frazier XOXO

Connie Rosenthal Berman <3

Brian Cavanaugh My thoughts and prayers are with you and your family Marci.

Deborah-Jo Essrog Thinking of you.

Amy Sober Russell Keeping you and your family in my thoughts. You are an amazing mom, Marci Weinberg Scher.

Sheri Knauth He is the strongest person I know. He gets his strength from your family. Sending love.

Helen Weisman Dagilis Keeping you all in my thoughts as always.

Cheryl Levine Snyderman <3

Cori Bednarek Major You all are an amazing family

Mindy Hammerman Lipsey Thinking of your family ❌⭕❌⭕

Debi Gersh Van Camp Thinking of you all. Xo

Barbara Paige Sending you much love

Tamara Jayne Flax sending hugs your way

Lara Turkel Fruman Sending love to your family.

Samantha Gitli Schaefer Your family is always in our thoughts! Is Ian available tomorrow morning? Zach would love to spend some time and share some new magic tricks with him.

Jennifer Larsen Orlando Love you guys, sending hugs and prayers.

Lisa Allentoff Hess 💚 - thinking of you all. Would love to grab lunch sometime.

Marlene Ettlin Thinking of all of you 💜❤

Rachel Heath Wallace I am praying for G-DS will. Coco

Anne Polakoff King Know that your hearts will tell you what is right for Ian and you.

Kristin Howlett Mazzarese Prayers, love, and hugs to you all

Anonymous said...

Jennifer Paradise Baker hugs to you and your family

Robin Katcoff You have such an amazing young man. He is much older and maturer than his years. Whatever decision you make will be the right one.

Karen Bennett My friend just said he is a strong little boy and very brave said god touched him to say something like that. My prayers are with you

Alan Guttman Thanks for sharing your thoughts and feelings....always reminds me to value life and the people in my life.

Sara Alima Ostrow Sending you hugs and keeping you all in my prayers.

Paige Weinberg Schwartz All of you are always in my thoughts and in my prayers!

Monique Erdos-Gertner Keep strong!

Sandra Huller <3 <3 <3 <3 :'(

Sherri Sibel Thomas Much love to all of you, Marci. Would a Flowers For Powers visit maybe help lift his spirits?

Tina Goldstein Moss Sending hugs and love from all the Mosses.

Cyn Weinstein Cherry What a strong son you have.

Arlene Brown Stein you are an amazing family

Sharyn Rosenberg Stein Thank you for guiding us with your strength and insights ❤❤

Julie Berman Katz Sending thoughts and prayers to you all. You and Brian are amazing parents!!

Wendy Elover Sending hugs, strength, & blessings. You are an amazing family.

Rachel Schreiber Levitan Hugs.

Amy Frid Moore Sending you and your family love! You are amazing!

Debbi Heyman Stern Think of you often...

Steve Szalecki Your son is strong and wise well beyond his years.

Reesa Greenberg Szikman Hugs and kisses and think of you often!

Debra Gross Brodinsky ❤❤❤❤

Anonymous said...

Audrey D Kline Sending love, hugs, and prayers....one minute at a time.

Emily Michelson Levin My thoughts and prayers continue to be with you all. You are an amazing family. Xo

Alicia Katznelson Broth {{{hugs}}} for you and that beautiful boy.

Stacy Israel Sending prayers. Love that wonderful little man

Susan Weinberg Lewis My nephew is an amazingly, bright, strong and smart beyond his years...he gets that from my amazingly bright, strong, and smart beyond their years sister and brother in law. Ian is so fortunate to call you mom and dad. 😘😘

Marci Phillips Thinking if you all. Much, much love.

Heather Lev Xoxo

Renee Valentino Block Your family is always in our prayers.

Amy Halle Nobil Thinking of you and your family and sending prayers your way.

Annelise Sullivan Oh my, Marci. Words can not come close to comforting you. What an insightful young man Ian has grown to be, to recognize this. Love to you all

Thesha Lewis Sending prayers for all of you..

Yvonne Harris Ragland Continuous prayers for strength and peace...

Amy Eisenberg Samay Sending our love to you guys.

Alexandra Kaplan Pratz Sending love and prayers

Rob Schiller Sending prayers and love to you guys.

Nancy Miller Levine You are always in my thoughts and prayers!


Keira Silberstein Keeping your family in my prayers.

Laurie Rubin Keeping your family in my thoughts and prayers.

A Nicole Windover <3 u r beautiful amazing people xo. My wishes for the best!!!

Heather Smith Macchia Thinking of your family. Hugs

Marci Scher said...

Ruth Cohen Ross Thinking and praying for all of you.

Deana Munchow Your family is in my thoughts.

Elizabeth Shamash Weatherholtz Thinking of Ian and your family.

Carye George Everett You are always in my prayers and thoughts. You are one amazing family.

Susan Hillebrand Schwartzman You guys are amazing and Ian is so lucky to have you for parents!

Alyssa Faye It is so courageous of you to have these conversations, let alone share them with us. Thanks for always letting us know what is going on, and know that we all support you!

Benjamin Levey An amazing child and an amazing family.

Harry Blacker As always our thoughts and prayers are with you guys. Hope you have a good holiday! Love to all!!

Tanya Kero Sending hugs xo

Rene Hurley Carfi You're in my thoughts and prayers. The love in your family is truly amazing.

Chandra Sacks Juarez Prayers for continued strength and joy.

Susan Brooks Cohen Hi, I want you to know how much Marisa appreciated the card Ian made when her dad died. It meant a lot to her knowing that Ian is also going through some tough times ahead.