Wednesday, October 28, 2015

Heaven over Hospital

It's all over Facebook, the article on CNN Heaven over Hospital - Dying girl, age 5, makes a choice
Reading this article hit home...the girl is dying of an incurable disease. She has a rare neurodegenerative illness. She was in and out of the hospital 3 times in a 10 month period getting unimaginable procedures (a suction catheter inserted into her nose, past her throat and into her lungs to clear out the secretions). Initially, she was only affected in her arms and legs, then came the respiratory. After watching their child go through unimaginable procedures, unable to fight back as they were being done because she was too weak to move and only seeing the tears stream down her cheeks, they decided to talk to her about Heaven. At what age do you talk to your dying child about Heaven...where do they want to go Heaven or Hospital (where they know those procedures will continue to happen). You know there is no way they will get better...there is no light at the end of the tunnel when you will have your healthy child back, the light at the end of the tunnel has your child out of pain, running, jumping, cutting, speaking, eating....but they are in Heaven.

Children who go through unimaginable things are wise beyond their years. They get things, things which adults don't sometimes get. I believe they know they are dying, they know there is no getting better...they know what their bodies can and can't take. They know they are getting tired and weaker. You can see it in their eyes, hear it in their voices and the things they say. You see it in their smiles. They may not be able to express it in words but they know and you know.

It has been over a year since Ian's last hospital stay. We have managed to keep him healthy, to keep the nasty out of our home...but we know it will come in's just a matter of time. Since his last hospital stay, we have had a similar talk with Ian about Heaven over Hospital...he gets so much more then you think. He knows what is happening with his body, he knows he is dying, knows he won't come off the vent, knows what he knows. He does not want to go back to the hospital, he doesn't want to be home, he wants to be at the Gilchrist Hotel. He knows heaven over hospital means he will be loved by many others he has not met yet, mommy, daddy and Becca will get there later after him. He knows he will be out of pain, running, jumping, walking, cutting, speaking, eating, swimming all the things he watches others do, all the things he used to do. 

Brian and I have decided to let Ian make this decision, to agree with his wishes...we completely and whole heartly agree with the parents of the little girl. 

1 comment:

Marci Scher said...

Marlene Ettlin πŸ’žπŸ’ž

Donna A. Lewis <3

Suzanne Borden Thinking of you all!

Deana Munchow What strength your family has.

Heather Schmidt Young *hugs*

Audrey D Kline Love and hugs to all of you.

Franny Lerner Hugs & love to you all

Lara Turkel Fruman He's so brave…you all are. Sending hugs!

Stephanie Rabinowitz You are the best parents the kids could ask for, not everyone could do what you do. ❤

Susan Weinberg Lewis Marci Weinberg Scher, you are my hero. I am the luckiest woman to be able to call you my sister. I am blessed beyond words to call Becca and Ian my niece and nephew. Brian, without you, my niece and nephew would not be who they are...and they are absolutely, PERFECT!!
Marci Weinberg Scher Love you Susan Weinberg Lewis
Susan Weinberg Lewis 😘

Michelle Levine Davis I don't know how you handle all you do. You four are such a strong amazing family. Hugs! πŸ’œ

Sherri Sibel Thomas Much love and hugs and kisses and everything else imaginable!!!!!!!! 😘❤

Stacy Berman Lunenfeld He's s lucky boy to call you mommy.

Shari Karp I am reading all of this and completely blown away. You are an amazing mom and human being. I admire you and hope our paths will cross one day so I can tell you in person just how much your blog has touched me.
Susan Weinberg Lewis Shari Karp, as her sister, I can only say, you have no idea...

Cami Zembower Continuing to keep this beautiful family in my heart & prayers.

Barbara Paige I wish I could find the perfect words to comfort you. Until I have a magic wand to give you and your family everything I wish I could, please know I send you so much love. Ian is not the only one wise beyond his years.Your strength and grace are remarkable. (((Hugs)))

Jennifer Larsen Orlando You're all strong. Thinking of you all.

Stacey Wright Martin Hugs and prayers!

Katie Cullen McGoey πŸ’œπŸ’œπŸ’œ πŸ˜‡ God bless you all and may He continue to give you strength especially when you think you can't bear any more. You are kind and selfless and such a wonderful mom to let him decide despite your own horrible loss and grief in that scenario. Thanks for sharing such personal stories. We appreciate learning from you and we hold you in our hearts. πŸ˜˜πŸ’œπŸ’œπŸ’œ

Lisa Reid Miller I remember the day you told me, the day after you had the conversation with I. Chris and I are amazed at the strength that you and your family display daily! Prayers and hugs from GA!

Anita Spivak Rozenel Sending love, prayers, and support to all of you! You are an amazing family and I am proud to know you.

Robin Dziedzic Ian is so lucky to have a wise and strong Mama like you, Marci! Hugs to the whole family as you enjoy these bright and well days.

Mitchell Cooper You and Brian are amazing! So are Ian and Becca. I admire your strength and bravery. We miss you all and love you all.

Barbara Pozen Cooper Love from our island to yours.

Hal Deutsch Marcy & Brian you are amazing parents!

Arlene Brown Stein you and Brian are amazing parents. I think Ian will make the right choice for you all. Our Superhero!!!

Jamie Nathanson Miller You are an amazing family. Always in my prayers.

Ellen White You are a truly amazing family. Thinking of Ian always.

Jill Pelovitz This is an unimaginably difficult situation. Your willingness to share and educate is so impressive. I believe parents as involved and loving as the two of you know what is right for your child. To look past your own needs and feelings and those of others and put your child first is a difficult and brave thing to do. No one knows Ian like you do. When the time comes you will do what you feel is best and my prayers will always be with you.