What If Part 3 Grief and Loss

Printed Materials

Fact Sheet

Fact Sheet Brochure

Frequently Asked Questions

Myths about Hydranencephaly

Myths Brochure

Dear Doctor Letter

What If? Part 3:
Grief and Loss Resources

Compassion

I cry when a tear rolls down your cheek;
I agonize when you weep.
I know that you question.
I know that you pray;
That you scream at night in your sleep.

I’m aware of your quavering voice when you speak;
Of your blank, straightforward stare.
I know of your pain, Your depression, your guilt;
That you search for a “a face” everywhere.

I watch as you walk with your head bowed low,
With despair written over your face.
I hear the quick sigh,
The internal cry.
I know how you wearily pace.

I see how you search, for a sign, for some hope,
That the light will still shine in your life.
I know how you live,
I know that you die
From the harsh words that wound, like a knife.

I empathize most with your loneliness now,
Even though you’re not always alone.
I see the rapture as you speak your child’s name,
For, I’ve lost a child of my own

By Charmaine Stickel

I’ve separated this section from the information on End of Life care so that people who need resources and information on grieving can find it quickly.

Ways of remembering your children:

There are a lot of ways you can keep your child’s memory alive. On the internet there are many sites that allow you to submit your child’s name and website.

What I’ve done: For each birthday, anniversary date, holiday etc; I purchase a bear (usually an angel bear) or something special in Kayda’s memory. For Easter I’ve found some nice Bunny angels. I’ve also started doing this for the child I lost at 17 weeks gestation. At first I’d put them on her grave in a plastic bag, but things kept getting stolen and I know she’s not there, so now I just keep them at home (the house is getting a little crowded with bears, maybe I’ll have to get a bigger house with more room for them).

I’ve created return address labels that have a picture of Kayda on them and her birth & death dates and say “In loving memory”.

Since Kayda’s death I’ve been given quite a few “guardian” angel pins. I always wear one in memory of Kayda.

I’ve started knitting sweaters for bears. I hope to go into business with a friend, selling bears with sweaters and nicely decorated/dressed bears. I’ve bought a tagging gun and all bears get labels that say in loving memory of Kayda. I will eventually use them to raise awareness of Hydranencephaly (once we’re a non profit organization and I can fund raise legitimately).

Other suggestions:
Wearing a bracelet or necklace with your child’s name on it.
Including a picture of your child in family pictures taken after his/her death

From April: Mom to Chris (hydranencephaly: Sept. 23, 1988-Feb. 1, 2003)
My nephew is having a hard time dealing with Chris' death. Them two have been together since Nathan was born. He is now 9. As Nathan got older, he started to question why Chris doesn't talk or play with him. He even said one day that he felt Chris didn't like him. I explained to him that Chris would love to do those things but couldn't. One day I heard him talking to Chris and I answered back in a " Chris voice." After that, him and Chris would "talk." Me being the voice for Chris. And he liked that. I still use my "Chris voice" to talk to Nathan. It brings a smile to his face. When I pick Nathan up from school, I use my Chris voice to ask him how is day was and if he was good.

Other addresses for Bereavement, Loss support

Hydanangels, for families of children with Hydranencephaly who have died.
(hydranangels-subscribe@yahoogroups.com )

The Compassionate Friends is a national/international grief support organization. To find the address of a chapter in your area: Phone: 1-630-990-0010 or go to:
http://www.compassionatefriends.org/index.html You can also get their address via a health unit or even the phone book.

Broken Hearts, Living Hope
Carol A. Ranney, Ed.
11040 SW Gaarde st. #8
Tigard, OR, 97224-3736
http://brokenheartslivinghope.homestead.com/
This is a free publication which is sent out monthly. Lots of information and support.

LOOK (Loss of Our Kids): emailing list for families of children with special needs who have died: LOOK-subscribe@yahoogroups.com

Other pages in this section
What If?
What if: part 1: Your child's last days
What if: part 1: Your child's last days links
What if: part 2: Funerals
What if: part 2: Funeral links
What if: part 2: Eulogies
What if? Part 3: Grief and Loss Resources
What if? Part 3: Grief and Loss Resources Links
What if? Part 3: Grief and Loss Resources: I'm not a mother anymore.

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca