HOPE Tote Bag

Yesterday we received our HOPE Tote bag from the CDH support organization CHERUBS.  I can not even begin to express how much this group of CDH parents, family and survivors have supported and encouraged us.  We were floored to receive this unexpected gift of baby clothes, blankets, NICU survival items and much more.

Included in the package was a CDH baby book.  This book is amazing - full of great information, CDH baby specific pages, pictures of other survivors and so on.  Anyway, there are a few things in the book that I want to share here.  You can view the entire baby book here: http://www.cdhsupport.org/babybook.php

They have a wish list of items needed to fill tote bags for other families.  You are invited in send items or money in honor of Madelyn Spence.

Ok, so here is the first cut and paste from the CDH baby book (edited a little bit by me to be more relevant and let you know what really stood out to me).

Advice for Family and Friends

• Listen. You don't have to say anything, just lend an ear and a shoulder.
• Learn about the child's problems and how to help take care of him/her. The parents will need trained babysitters that they can trust.
• Avoid saying things like "I understand", "It's God's will", "You just have to accept it and move on", and other cliches and "words of wisdom". Stay positive and respect the parents' decisions and feelings.
• Offer rides to the hospital, babysitting siblings, doing laundry, cooking meals, cleaning, picking up mail, making phone calls, etc.
• Encourage the parents to talk about how they feel, but don't push them too hard.
• Realize that the parents will need support, comfort, and help for many years, not weeks.
• Ask questions, find information, seek support for the parents- but realize that there arecertain boundaries.
• Bring food, books, and magazines to the hospital.
• Take pictures, videos, and help the parents to accumulate mementos.
• Don't be afraid to cry too. The parents know that their family and friends are hurting too.
• Don't expect everything to be "normal" someday- accept the child for who he/she is, an individual.
• Call the baby by name, not "John and Mary's baby" or other such references.
• Talk to your children about the baby and about what is going on in words that they can understand so that they won't be scared of the baby.
• Let the parents grieve in their own ways- even parents of survivors need to grieve.
• Ask the parents what they need and make them feel comfortable enough to let you know.
• Don't criticize the parents (or baby) if their child is developmentally behind or not eating with words like "Isn't that baby eating yet?", "Why isn't he/she gaining weight", "A year old and not crawling yet?".
• These children cannot be compared to healthy children or even other CDH children. They have their own paths to follow and reminding the parents that their child isn't "normal" is very painful.
• Don't try to cheer up the parents if they break down crying in front of you...sometimes we need to cry and be sad. Sometimes trying to cheer us up just makes us feel worse.