Tuesday, December 30, 2008

Pride & Humility

In all things and people dealing with CDH...

"Pride is concerned with who is right. Humility is concerned with what is right."
— Ezra Taft Benson

"I have three precious things which I hold fast and prize. The first is gentleness; the second frugality; the third is humility, which keeps me from putting myself before others. Be gentle and you can be bold; be frugal and you can be liberal; avoid putting yourself before others and you can become a leader among men."
— Lao-Tzu

CHERUBS & CDH Awareness on Facebook

There are several CHERUBS & CDH Awareness groups on Facebook:

Dawn's Facebook Profile - http://www.facebook.com/profile.php?id=727837892

CHERUBS CDH Cause for Facebook - http://apps.facebook.com/causes/44070?m=7bf7bab2

Group to Stop The "Congenital Diaphragmatic Hernia Awareness" Trademark - http://www.facebook.com/group.php?gid=56377210497

CHERUBS Facebook Group - http://www.facebook.com/group.php?gid=56377210497#/group.php?gid=2243563143&ref=ts

CHERUBS Fan Club Page - http://www.facebook.com/group.php?gid=56377210497#/pages/Wake-Forest-NC/CHERUBS-Congenital-Diaphragmatic-Hernia-Research-Awareness-and-Support/37214172005?ref=ts

CHERUBS Australia Facebook Group -http://www.facebook.com/group.php?gid=56377210497#/group.php?gid=14672084879&ref=ts

CHERUBS UK Facebook Group - http://www.facebook.com/group.php?gid=56377210497#/group.php?gid=8375535821


We're raising LOTS of Awareness on Facebook!

Friday, December 26, 2008

Miracles Do Exist

This video is from our local NC news channel. It's quite inspirational to everyone, but especially to families who are dealing with medically fragile children such as our children born with Congenital Diaphragmatic Hernia.

http://www.wral.com/news/local/video/4187280/

This is a wonderful example of why our organization is named CHERUBS. For the baby angels that these children are. Miracles can happen with angels and cherubs. So many of our families have witnessed miracles. Miracles do exist.

Monday, December 22, 2008

Happy Holidays From CHERUBS!

May you all have a wonderful, joyous and peaceful holiday!


from
All The Members of CHERUBS

The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

Friday, December 19, 2008

Wednesday, December 17, 2008

Upcoming Events at CHERUBS!




Just a few of the events coming up at CHERUBS!


February, 2009

Valentine's Day Cherubs Fundraiser - February 14, 2009 around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


March, 2009

Texas Bake Sale
- Corpus Christi, TX. You can reach Melissa at 361-288-4698
CHERUBS Ebay Auctions - around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


April, 2009

CHERUBS International CDH Awareness Balloon Release & Candlelighting Event
Michigan JayCee's Event


May, 2009

Michigan Member Bowl-a-Thon - in Flint, Michigan. You can reach Barb at bwagner@cherubs-cdh.org or 810-845-8480
North Carolina Walk for Cherubs - in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129
Churches for Cherubs Event - around the world! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


June, 2009

2009 UK Conference - in Great Britain. You can reach Brenda at blane@cherubs-cdh.org or 0800 731 6991
Pennsylvania Get-Together -
You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073


July, 2009

2009 International Member Conference - in Texas! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


August, 2009

Ohio Get-Together - in Columbus, OH. You can reach Tara at thall@cherubs-cdh.org or 614-275-0858


September, 2009

Jeremiah’s Car Show - in Columbus, Ohio. You can reach Sarah at sdeskins@cherubs-cdh.org or 419-512-3446


October, 2009

2009 Australia Conference - in Australia. You can reach Danielle at dkessner@cherubs-cdh.org or 03 5135 6999
New England Get-Together - in Salem, Massachusetts. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182
Gabe’s Bowl-a-Thon
- in Salem, Massachusetts. You can reach Corin at cnava@cherubs-cdh.org or 401-524-9182
CHERUBS Masquerade Angel Ball
- October 30, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


December, 2009

National Children’s Memorial Day - December 13, 2009 at 7:00 pm around the world
New England Truffle Sale - in Rhode Island. You can reach Corin at cnava@cherubs-cdh.org
or 401-524-9182


January, 2010

Shannon Crawford CDH Spaghetti Dinner - January 16, 2010 in Elizabeth, Pennsylvania. You can reach Kate at kcrawford@cherubs-cdh.org or 412-414-7073
Blood Drive in Memory of Shane Torrence - January 28, 2010 in Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


February, 2010

Valentine's Day Cherubs Fundraiser - February 14, 2010 around the world. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


April, 2010

CHERUBS Golf Tournament - Wake Forest, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


July, 2010

2010 International Member Conference in San Francisco, California. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


October, 2010

CHERUBS Masquerade Angel Ball - October 29, 2009 at Duke Gardens in Durham, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129


If you would like to add an event, please let us know! events@cherubs-cdh.org



Michigan Blood Drive in memory of Faith Grace Miles




This fall, the family and friends of sweet little cherub, Faith Grace Miles, held a blood drive and balloon release in her memory and to raise awareness. Faith's parents, Amy and Steve, have done so much in her memory in less than a year already... we know Faith is as proud of them as we are!

Gabe's Gifts


Once upon a time, CHERUBS used to be able to afford to send out new member packets and items for new and expectant parents. We haven't been able to afford to do so for the past few years unfortunately due to lack of donations and a membership that has grown wildly. But our New England members have started offering this service again to new and expectant members up north and we are thrilled and proud of what they are doing and hope to offer it across the U.S. again soon!

(from Corin)

Gabriel's Gifts is a project we started to provide new and expectant parents of CDH babies with gift bags. We all know how difficult it is to have a child with CDH living in the NICU fighting for life, and hope that these bags will bring a little comfort to those families.

In these bags we hope to include items such as a baby blanket/quilt, eye cover, hat, booties, journal, pens, disposable camera, childrens book, lip balm, CDH information packet, gift cards, and any other comfort items that may be helpful.

We are in desperate need of donations to put these bags together. For $20 you can sponsor a gift bag that will help a family in need. In exchange for your sponsorship we will include your cherubs story in the sponsored bag. We also would greatly appreciate in-kind donations of any of the above items. If you would like to donate some items or would like to sponsor a gift bag in honor/memory of your cherub please contact Corin at cnava@cherubs-cdh.org.

New England Holiday Truffle Sale


(from Corin)

This years holiday truffle sale went very well! We sold boxes and platters of truffles in a variety of flavors including banana, coconut, orange creamsicle, peanut butter, mocha, double chocolate, raspberry, key lime, and Andes mint. We sold over 2200 truffles this year to raise money for the Gabriel’s Gift Bag project. Thanks to everyone who helped us sell them, we raised enough money to fill 50 bags!

For more information and photos, visit the New England CHERUBS blog at http://newenglandcherubs.wordpress.com/

Gabe's Bowl-A-Thon

(From Corin)


The Bowl-A-Thon fundraising event was a huge success! We had over 50 people in attendance, including 6 CHERUBS families and 3 beautiful cherubs themselves! We succeeded in beating our fundraising goal, but best of all were able to have fun and spread some CDH Awareness to the local bowlers. The staff were very interested in what we were raising money for, and asked us to come back next year to make it an annual event :)

A big thank you to all who participated and to all those who sponsored the event!

For more information and photos, visit the New England CHERUBS blog at http://newenglandcherubs.wordpress.com/





Pennsylvania Camping Trip

Several of our CDH families met up for a weekend of camping in Pennyslvania! If you are interested in the next camping expedition, contact our PA State Representative, Kate, at kcrawford@cherubs-cdh.org





2008 Ohio Picnic Photographs

Photos from our 2008 CHERUBS Ohio Picnic!




Jeremiah's Car Show



Above are photos from Jeremiah's car show for CDH. Saturday September 20th 2008 in Ashley, Ohio.

We raised $830 total through open donations to register cars and several raffles. The main raffle being a fully restored 1940 pedal car, compliments of Jeremiah's Uncle Bryon and family friend Bud Lemley. The parts to the car were donated to us by Tom and Sindy Kohler of Cardington. We also had birthday cake for Jeremiah and a balloon launch. Proceeds were split between CHERUBS and Nationwide Children's Hospital's J4 NICU.

Sarah Deskins - sdeskins@cherubs-cdh.org
Ohio State Representative & Jeremiah’s Mom

Donations In Honor / Memory of Cherubs

(From Dawn)

I just sent this out to my family and friends:

http://www.firstgiving.com/cdhresearch

I am donating in memory of Shane this Christmas and invite all of you to donate in honor or memory of someone that you love. CHERUBS receives little donations and no grants. None of our volunteers are paid. We run out of my house to save costs. Yet, we help over 2600 families in 38 countries and do research as well, not to mention having to fight this trademark for all CDH families and organizations. We do all that we do for FREE for these babies and families. We LOVE what we do and we could do so much more with just a little of help. It's tax-deductible even! So before you donate this year to the big foundations with millions of dollars or those with big grants or those who are all about raising money and making money and getting donations.... don't forget us little grassworks little guys who are working hard to make a difference and do it all freely! We could be doing so, so, so much more! http://www.cdhsupport.org

--------------------------------------

You all, it's been a hard year for everyone, I know. CHERUBS has taken a hit as well and if it wasn't for a few generous members who make sure we keep up services.... a lot of things wouldn't have happened, like our conference. Now, we're fighting this trademark issue and if we lose, we won't be able to keep our fundraising sites like cafepress up without paying someone a fee everytime we sell something - if we get to keep them at all. This will devastate us financially. Usually just 3% of members donate each year - this year it's been about 1%. That's around 26 members out of 2600. But that's ok - we're not here to make money, we're here to help you all! Our big events were great - but we broke even after costs and the conference (conferences are not cheap!) - and it was our first year for the Angel Ball and Golf Tournament so we needed more exposure and more ticket sales. Next year hopefully will be better.

We could be doing so much more - newsletters again, new member packets again - both cut because donations have dried the past 3 years due to slander that I won't get into here. But do you all know how many families that has affected? How many new and expectant families who didn't get packets of information from us? And how many off-line families who aren't getting newsletters? We need your help. I HATE asking for donations.... which is probably why we don't have grant funding but Sarah's going to help us with that next year - yeah, Sarah! Smile But for now... for our conferences, research site, this site and all of our services.... we could still be doing so much more! Those of you who have only been here less than 3 years.... if you only knew all that we used to be able to do, how much bigger we were in services - we have taken such a hit. And it breaks my heart to not be able to offer all the things we used to be able to offer.

I know a lot of you help raise funds for the Red Cross, March of Dimes, Pulmonary Hypertension Foundation and other foundations.... it's wonderful, absolutely wonderful and I am so proud of you all! But please don't forget CHERUBS.... those organizations are amazing but they all receive mega-money from grants and marathons and awareness days and we're just the little guys here but I think - and correct me if I'm wrong - CHERUBS makes the most impact helping CDH families. We're here for all of you, any time you need us. There is nothing we won't do to help CDH families and we've spent the past 15 yrs showing that. We're a charity - not a business without a heart - our focus is YOU! :)

We don't ask for donations much. We don't send out letters or e-mails asking for money. We don't charge a membership fee like most organizations our size do. And we all volunteer. The marketing company keeps pushing me to have a call center and call you all individually asking for donations - I won't do it. CHERUBS is not about money, at all. But companies charge us for this site, our po box, postage, ink, paper, event rentals, ads, hosting, etc - we have to pay that somehow. A smile and a "please don't charge our charity" doesn't work - I've tried. :)

And don't forget you can create a firstgiving page in honor or memory of your cherub too. Great way to raise money and awareness with family and friends! A couple of you raised quite a bit this way - bless you! http://www.firstgiving.com/10125

So this is *not* a plea for money..... this is a *please don't forget we're here and we need help to keep functioning too*.

A few members with Firstgiving pages helping to raise money for CHERUBS and CDH Research:

In honor of Logan Wagner - http://www.firstgiving.com/loganscdhfundraiser
In honor of Adam Hess - http://www.firstgiving.com/karahess1
In memory of Faith Grace Miles - http://www.firstgiving.com/faithgracecdh
In honor of Jayden Valasek - http://www.firstgiving.com/jaydenvalasek
Gabe's Bowl-A-Thon, in memory of Gabriel Nava - http://www.firstgiving.com/gabrielsbowlathon
In memory of Madison Brooks - http://www.firstgiving.com/christiebrooks
In memory of Emily Lepaige Spencer - http://www.firstgiving.com/bessiebatton
In memory of Asher James Switzer McCoy - http://www.firstgiving.com/babyasher
In memory of Shane Torrence - http://www.firstgiving.com/shanetorrence
CHERUBS (our first page that we haven't really used yet) - http://www.firstgiving.com/cherubs
Congenital Diaphragmatic Hernia Research - http://www.firstgiving.com/cdhresearch
Congenital Diaphragmatic Hernia Trademark Opposition Fund - http://www.firstgiving.com/cdhawarenesstrademark

Tuesday, December 16, 2008

Sometimes.... Anyway

Sometimes you speak out when all you want to do is stay quiet because you know the words need to be said. You do it anyway.

Sometimes you fight for what you believe in even if others do not see. You do it anyway.

Sometimes the right thing to do is not the popular thing to do. You do it anyway.

Sometimes you have to say "no" to get to "yes" and it's hard. You do it anyway.

Sometimes you have to stand up for others; children, the disabled, the elderly and you wonder why you have to be the one to stand up for them. You do it anyway.

Sometimes you give your last dollar to the homeless man on the corner of your street, even if it is your last dollar. You do it anyway.

Sometimes you stay away from the cliques, the popular groups, the jr. high crowd that steps on others - even if you feel lonely or feel intimidated to stay. You do it anyway.

Sometimes you give up something you want because you know it's not what you need or what the right thing for you is. You do it anyway.

Sometimes you walk away from people who you know deep down do not care about you or have your best interests at heart, even if you care about them. You do it anyway.

Sometimes you say the truth even when it hurts, is embarrassing, or makes you swallow your pride. You do it anyway.

Sometimes you feel like giving up the fight instead of keeping fighting. You don't want to fight when you're tired, dejected, are giving up hope. You do it anyway.

Sometimes you don't give up and keep believing even when others tell you that it's hopeless. You do it anyway.

Sometimes the people you love can seem unlovable. You do it anyway.

Sometimes dreams seem like they will never come true. You do it anyway.

Sometimes miracles are hard to believe in. You do it anyway.

CDH families do it anyway.

Monday, December 15, 2008

What Can I Do In Honor or Memory of My Cherub?

"What can I do?" - we get asked that almost every day. Parents of survivors feel the need to "give back" for the blessing of having their cherub still here. Grieving parents feel the need to honor and remember their cherubs' lives. Having a baby born with Congenital Diaphragmatic Hernia is hard, very hard - no matter the outcome, it is not easy by any means. But with the need to take care of, protect, and advocate for our children comes a great responsibility to help others who will follow in our footsteps. Most parents who have dealt with CDH feel this way. Sometimes, deep in grief or deep in doctors appts and hospitalizations - just thinking about helping others can feel so overwhelming when we are barely keeping our own heads above water.

We understand this at CHERUBS. This is why our organization is a group made of ALL of us. A group. An organization. A collection of more than 1 person working together for a common goal. Helping families of children born with Congenital Diaphragmatic Hernia.

Every member helps in their own ways:

* Sharing their stories.
* Sharing photos.
* Being there for other members to lend a shoulder or an ear.
* Adding research links to our site.
* Participating in medical research.
* Donating to help fund services or research.
* Dropping off CHERUBS brochures to their hospitals.
* Raising awareness on the internet through their sites and blogs.
* Promoting awareness through wearing our ribbons or awareness items.
* Signing the Congenital Diaphragmatic Hernia Awareness Trademark petition.
* Protecting other CDH parents by informing them.
* Standing up to those who wish to take away rights to raise CDH awareness in honor / memory of our children. Standing up for our children!
* Volunteering at CHERUBS to help with any number of events or fundraisers.
* Participating in events.
* Holding events such as bake sales, blood drive, awareness walks, balloon releases, car shows, formal events, sports tournaments and more.
* Donating items to Gabe's Gifts
* Donating baskets to the Angel Ball
* Being involved in the CDH community
* Taking a stand against CDH

We are all strong, all of us. No matter the outcome or circumstances. We all have something to offer the CDH families who come behind us. We are all responsible for helping them in some way. Informing new / expectant families. Protecting them from misinformation or being taken advantage of during the hardest times in their lives. Making sure they have all the information they need about CDH. Making sure they have support from people who have been there and understand - no matter where their journey leads - we understand.

"Do unto others as you would have them do unto you" - GOD

We owe all the new and expectant parents an easier path than the ones we had before us. If each of us makes it easier, maybe someday we can remove the path altogether.

Videos of Cherubs - Gabriel

Videos of Cherubs - Landon Tyler Boothe

We have decided to add a new video to our blogs once a week. If you would like to submit a video, please e-mail us the link to your youtube or video site account to membership@cherubs-cdh.org

Landon Tyler Boothe

Sunday, December 7, 2008

CHERUBS Holiday Cards

Adorable drawings by adorable kids! All raising awareness and research funds!

http://www.cafepress.com/cherubs/3918237










Why CHERUBS will *not* be participating in Congenital Diaphragmatic Hernia Awareness Day



Because of the legal and ethical issues behind "Congenital Diaphragmatic Hernia Awareness Day" and the fact that proclamations gathered by CDH families for this day were used in the registering of the "Congenital Diaphragmatic Hernia Awareness" trademark, CHERUBS gracefully chooses to decline to support this event.

http://www.ipetitions.com/petition/cdhawareness/

We respect the rights of our members and all CDH families to celebrate CDH Awareness on March 31 but in good conscience, we can not support this event or the organizations behind it.

Instead, CHERUBS chooses to support CDH families and awareness every day, by everyone. Freely. CHERUBS wishes to support the organizations and families who work hard, all year round, to stand up for our children and make sure that their rights and their memories are respected:

CHERUBS Australia
CHERUBS UK
Kays Kids
Jack Ryan Gillham Foundation
Little Lambs
Olivia Raine Foundation
Rainbow of Hope
CHERUBS

Let's all show our support of these babies and the organizations and medical care providers who work hard to protect them and help them all year round.


Saturday, December 6, 2008

"Death of a Child"

"Death of a Child"

Sorry I didn't get to stay...
To laugh and run and play..
To be there by your side..
I'm sorry that I had to die..

God sent me down to be
with you, to make your
loving heart anew.. To help
you look up and see Both
God and little me..

Mommy, I wish I could stay..
Just like I heard you pray..
But, all the angels did cry
when you told little me
goodbye

God didn't take me cause'
He's mad.. He didn't send
me to make you sad.. But
to give us both a chance
to be a love so precious...
don't you see?

Up here no trouble do I see
and the pretty angels sing
to me.. The streets of gold
is where I play, you'll come
here too, mommy, someday..

Until the day you join me here,
I'll love you mommy, dear..
Each breeze you feel and see,
brings love and a kiss from me..

Author~Sandy Eakle

Helen Keller

"When it seems that our sorrow is too great to be borne,
let us think of the great family
of the heavy-hearted into which our grief has given us entrance,
and inevitable,
we will feel about us,
their arms and their understanding."

- Helen Keller

The Up Hill Battle of Grief

"It isn't for the moment you are struck
that you need courage,
but for the long up hill battle to faith,
sanity and security."

- Anne Morrow Lindbergh

Grief

"Grief is a tidal wave that over takes you,
smashes down upon you with unimaginable force,
sweeps you up into its darkness,
where you tumble and crash against unidentifiable surfaces,
only to be thrown out on an unknown beach, bruised, reshaped...
Grief will make a new person out of you,
if it doesn't kill you in the making."

- Stephanie Ericsson

Hope


"Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today"
- Thict Nhat Hanh

Identifying, Understanding and Working with Grieving Parents in the NICU

Identifying, Understanding and Working with Grieving Parents in the NICU
by Kirsti Dyer, MD

http://www.docstoc.com/docs/533194/Identifying-Understanding-and-Working-with-Grieving-Parents-in-the-NICU

Helping Yourself Heal When Your Child Dies

Helping Yourself Heal When Your Child Dies

Allow Yourself to Mourn

Your child has died. You are now faced with the difficult, but important, need to mourn. Mourning is the open expression of your thoughts and feelings regarding the death of your child. It is an essential part of healing.

With the death of your child, your hopes, dreams and plans for the future are turned upside down. You are beginning a journey that is often frightening, painful, and overwhelming. The death of a child results in the most profound bereavement. In fact, sometimes your feelings of grief may be so intense that you do not understand what is happening. This article provides practical suggestions to help you move toward healing in your personal grief experience.

Realize Your Grief is Unique

Your grief is unique. No one will grieve in exactly the same way. Your experience will be influenced by a variety of factors: the relationship you had with the person who died; the circumstances surrounding the death; your emotional support system; and your cultural and religious background.

As a result of these factors, you will grieve in your own special way. Don't try to compare your experience with that of other people or to adopt assumptions about just how long your grief should last. Consider taking a "one-day-at-a-time" approach that allows you to grieve at your own pace.

Allow Yourself to Feel Numb

Feeling dazed or numb when your child dies may well be a part of your early grief experience. You may feel as if the world has suddenly come to a halt. This numbness serves a valuable purpose: it gives your emotions time to catch up with what your mind has told you.

You may feel you are in a dream-like state and that you will wake up and none of this will be true. These feelings of numbness and disbelief help insulate you from the reality of the death until you are more able to tolerate what you don't want to believe.

This Death is "Out of Order"

Because the more natural order is for parents to precede their children in death, you must readapt to a new and seemingly illogical reality. This shocking reality says that even though you are older and have been the protector and provider, you have survived while your child has not. This can be so difficult to comprehend.

Not only has the death of your child violated nature's way, where the young grow up and replace the old, but your personal identity was tied to your child. You may feel impotent and wonder why you couldn't have protected your child from death.

Expect to Feel a Multitude of Emotions

The death of your child can result in a variety of emotions. Confusion, disorganization, fear, guilt, anger and relief are just a few of the emotions you may feel. Sometimes these emotions will follow each other within a short period of time. Or they may occur simultaneously.

As strange as some of these emotions may seem, they are normal and healthy. Allow yourself to learn from these feelings. And don't be surprised if out of nowhere you suddenly experience surges of grief, even at the most unexpected times. These grief attacks can be frightening and leave you feeling overwhelmed. They are, however, a natural response to the death of your child. Find someone who understands your feelings and will allow you to talk about them.

Be Tolerant of Your Physical and Emotional Limits

Your feelings of loss and sadness will probably leave you fatigued. Your ability to think clearly and make decisions may be impaired. And your low-energy level may naturally slow you down.

Respect what your body and mind are telling you. Nurture yourself. Get daily rest. Eat balanced meals. Lighten your schedule as much as possible. Caring for yourself doesn't mean feeling sorry for yourself it means you are using survival skills.

Talk About Your Grief

Express your grief openly. When you share your grief outside yourself, healing occurs. Ignoring your grief won't make it go away; talking about it often makes you feel better. Allow yourself to speak from your heart, not just your head. Doing so doesn't mean you are losing control or going "crazy." It is a normal part of your grief journey.

Watch Out for Cliches

Cliches--trite comments some people make in attempts to diminish your loss--can be extremely painful for you to hear. Comments like, "You are holding up so well," "Time heals all wounds," "Think of what you have to be thankful for" or "You have to be strong for others" are not constructive. While these comments may be well-intended, you do not have to accept them. You have every right to express your grief. No one has the right to take it away.

Develop a Support System

Reaching out to others and accepting support is often difficult, particularly when you hurt so much. But the most compassionate self-action you can do at this difficult time is to find a support system of caring friends and relatives who will provide the understanding you need. Seek out those people who encourage you to be yourself and acknowledge your feelings -- both happy and sad.

A support group may be one of the best ways to help yourself. In a group, you can connect with other parents who have experienced the death of a child. You will be allowed and gently encouraged to talk about your child as much, and as often, as you like.

Sharing the pain won't make it disappear, but it can ease any thoughts that what you are experiencing is crazy, or somehow bad. Support comes in different forms for different people -- support groups, counseling, friends, faith -- find out what combination works best for you and try to make use of them.

Embrace Your Treasure of Memories

Memories are one of the best legacies that exist after the death of a child. You will always remember. Instead of ignoring these memories, share them with your family and friends.

Keep in mind that memories can be tinged with both happiness and sadness. If your memories bring laughter, smile. If your memories bring sadness, then it's all right to cry. Memories that were made in love -- no one can take them away from you.

Gather Important Keepsakes

You may want to collect some important keepsakes that help you treasure your memories. You may want to create a memory book, which is a collection of photos that represent your child's life. Some people create memory boxes to keep special keepsakes in. Then, whenever you want, you can open your memory box and embrace those special memories. The reality that your child has died does not diminish your need to have these objects. They are a tangible, lasting part of the special relationship you had with your child.

Embrace Your Spirituality

If faith is part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of the death of your child, realize this feeling as a normal part of your grief work. Find someone to talk with who won't be critical of whatever thoughts and feelings you need to explore.

You may hear someone say, "With faith, you don't need to grieve." Don't believe it. Having your personal faith does not insulate you from needing to talk out and explore your thoughts and feelings. To deny your grief is to invite problems to build up inside you. Express your faith, but express your grief as well.

Move toward Your Grief and Heal

To restore your capacity to love you must grieve when your child dies. You can't heal unless you openly express your grief. Denying your grief will only make it become more confusing and overwhelming. Embrace your grief and heal.

Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself. Never forget that the death of your child changes your life forever. It's not that you won't be happy again, it's simply that you will never be exactly the same as you were before the child died.

The experience of grief is powerful. So, too, is your ability to help yourself heal. In doing the work of grieving, you are moving toward a renewed sense of meaning and purpose in your life.

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(note from Dawn): In addition, I think this should also be added; "You have the right to grieve any way that you need to that is healthy. Grief is not an excuse to be cruel or uncompassionate to others. Remember those around you who are grieving as well and also do unto others as you would have them do unto you. Pushing people away, alienating others or taking your anger out on others is not only destructive to your relationships but it makes you feel even more alone in your grief."

Helping Children Cope With Grief

Helping Children Cope With Grief

When Someone Loved Dies

Adults grieve. So do children. As an adult or child, experiencing grief means to "feel," not just to "understand." Anyone old enough to love is old enough to grieve. Even before children are able to talk, they grieve when someone loved dies. And these feelings about the death become a part of their lives forever.

Caring adults, whether parents, relatives or friends, can help children during this time. If adults are open, honest and loving, experiencing the loss of someone loved can be a chance for children to learn about both the joy and the pain that comes from caring deeply for other people.

Talking About Death to Children

Adult sometimes have trouble facing death themselves. So open, honest discussions about death with children can be difficult. Yet adults who are able to confront, explore and learn from their own personal fears about death can help children when someone loved dies. As a result, children can form " a healthy attitude toward both life and death.

When a death occurs, children need to be surrounded by feelings of warmth, acceptance and understanding. Caring adults can provide this support.

A Caring Adult's Role

How adults respond when someone loved dies has a major effect on the way children react to the death. Sometimes, adults don't want to talk about the death, assuming that by doing so children will be spared some of the pain and sadness.

However, the reality is very simple: children will grieve, anyway.

Adults who are willing to talk openly about the death help children understand that grief is a natural feeling when someone loved had died. Children need adults to confirm that it's all right to be sad and to cry, and that the hurt they feel now won't last forever.

When ignored, children may suffer more from feeling isolated than from the actual death itself. Worse yet, they feel all alone in their grief.

Encourage Questions About Death

When someone loved had died, adults need to be open, honest and loving. Patiently, they need to answer questions about the death in language children can understand.

Adults shouldn't worry about having all the answers. The answers aren't as important as the fact that they're responding to the questions in a way that shows they care.

Children may repeat the same questions about the death again and again. It's natural. Repeating questions and getting answers helps them understand and adjust to the loss of someone loved.

Establish a Helping RelationshipM

Respond to children with sensitivity and warmth. Be aware of voice tone; maintain eye contact when talking about the death. What is communicated without words can be just as meaningful to children as what is actually said.

Let children know that their feelings will be accepted. Although some of their behavior may seem inappropriate, adults need to understand children during this stressful time, not judge their behavior or criticize.

Children need to know that adults want to understand their point of view. This commitment tells a child, "You're worthwhile; your feelings will be respected."

Sharing Religious Beliefs with a Child

Adults often wonder if they should share with children their religious beliefs regarding death. This is a complex issue; no simple guidelines are available.

Keep in mind that adults can only share with children those concepts they truly believe. Any religious explanations about death must also be described in concrete terms; children have difficulty understanding abstractions. The theological correctness of the information is less important at this time than the fact that the adult is communicating in a loving way.

Allow Children to Participate

Create an atmosphere that tells children that their thoughts, fears and wishes will be recognized when someone loved dies. This recognition includes the right to be part of planning the arrangements for the funeral.

Although children may not completely understand the ceremony surrounding the death, being involved in the planning of the funeral helps establish a sense of comfort and the understanding that life goes on even though someone loved has died.

Since the funeral of someone loved is a significant event, children should have the same opportunity to attend as any other member of the family. That's "allowed" to attend, but not "forced." Explain the purpose of the funeral: as a time to honor the person who has died; as a time to help, comfort and support each other and as a time to affirm that life goes on.

Viewing the body of someone loved who has died can also be a positive experience. It provides an opportunity to say "goodbye" and helps children accept the reality of the death. As with attending the funeral, however, seeing the body should not be forced.

Growing Through Grief

Grief is complex. It will vary from child to child. Caring adults need to communicate to children that this feeling is not one to be ashamed of or something to hide. Instead, grief is a natural expression of love for the person who died.

As a caring adult, the challenge is clear: children do not choose between grieving and not grieving; adults, on the other hand, do have a choice- to help or not to help children cope with grief.

With love and understanding, adults can guide children through this vulnerable time and help make the experience a valuable part of a child's personal growth and development.

Suggested Guidelines Concerning Children and Grief

Be a good observer. See how each child is behaving. Don't rush in with explanations. Usually, it's more helpful to ask exploring questions than to give quick answers.

When someone loved dies, don't expect children's reactions to be obvious and immediate. Be patient and b e available.

Children are part of the family, too. And reassurance comes from the presence of loving people. Children feel secure in the care of gentle arms and tenderness.

When describing the death of someone loved to a child, use simple and direct language.

Be honest. Express your own feelings regarding the death. By doing so, children have a model for expressing their own feelings. It's all right to cry, too.

Allow children to express a full range of feelings. Anger, guilt, despair and protest are natural reactions to the death of someone loved.

Listen to children, don't just talk to them.

No one procedure or formula will fit all children, either at the time of death or during the months that follow. Be patient, flexible and adjust to individual needs.

Adults must recognize their own personal feelings about death. Until they consciously explore their own concerns, doubts, and fears about death, it will be difficult to support children when someone loved dies.

More Definitions

We have a long list of commonly used medical terms in our Parent Reference Guide, definitions to help parents understand the diagnosis of Congenital Diaphragmatic Hernia in their child.

But here are a few more definitions that are equally important in dealing with CDH:

COMPASSION -
NOUN: Deep awareness of the suffering of another coupled with the wish to relieve it.

EMPATHY -
NOUN: Identification with and understanding of another's situation, feelings, and motives.

COMFORT -
TRANSITIVE VERB: com·fort·ed , com·fort·ing , com·forts
  1. To soothe in time of affliction or distress.
  2. To ease physically; relieve.
NOUN:
  1. A condition or feeling of pleasurable ease, well-being, and contentment.
  2. Solace in time of grief or fear.
  3. Help; assistance: gave comfort to the enemy.
  4. One that brings or provides comfort.
  5. The capacity to give physical ease and well-being: enjoying the comfort of my favorite chair.
SUPPORT - TRANSITIVE VERB: sup·port·ed , sup·port·ing , sup·ports
  1. To bear the weight of, especially from below.
  2. To hold in position so as to keep from falling, sinking, or slipping.
  3. To be capable of bearing; withstand: "His flaw'd heart . . . too weak the conflict to support" (Shakespeare).
  4. To keep from weakening or failing; strengthen: The letter supported him in his grief.
  5. To provide for or maintain, by supplying with money or necessities.
  6. To furnish corroborating evidence for: New facts supported her story.
    1. To aid the cause, policy, or interests of: supported her in her election campaign.
    2. To argue in favor of; advocate: supported lower taxes.
  7. To endure; tolerate: "At supper there was such a conflux of company that I could scarcely support the tumult" (Samuel Johnson).
  8. To act in a secondary or subordinate role to (a leading performer).
NOUN:
    1. The act of supporting.
    2. The state of being supported.
  1. One that supports.
  2. Maintenance, as of a family, with the necessities of life.
CHARITY - NOUN: pl. char·i·ties
  1. Provision of help or relief to the poor; almsgiving.
  2. Something given to help the needy; alms.
  3. An institution, organization, or fund established to help the needy.
  4. Benevolence or generosity toward others or toward humanity.
  5. Indulgence or forbearance in judging others.
  6. often Charity Christianity The theological virtue defined as love directed first toward God but also toward oneself and one's neighbors as objects of God's love.
SANITY - NOUN:
  1. The quality or condition of being sane; soundness of mind.
  2. Soundness of judgment or reason.
RESPECT - RANSITIVE VERB: re·spect·ed , re·spect·ing , re·spects
  1. To feel or show deferential regard for; esteem.
  2. To avoid violation of or interference with: respect the speed limit.
  3. To relate or refer to; concern.
NOUN:
  1. A feeling of appreciative, often deferential regard; esteem.
  2. The state of being regarded with honor or esteem.
  3. Willingness to show consideration or appreciation.
  4. respects Polite expressions of consideration or deference: pay one's respects.
  5. A particular aspect, feature, or detail: In many respects this is an important decision.
  6. Usage Problem Relation; reference.
INTEGRITY - NOUN:
  1. Steadfast adherence to a strict moral or ethical code.
  2. The state of being unimpaired; soundness.
  3. The quality or condition of being whole or undivided; completeness.
HONOR - NOUN:
  1. High respect, as that shown for special merit; esteem: the honor shown to a Nobel laureate.
    1. Good name; reputation.
    2. A source or cause of credit: was an honor to the profession.
    1. Glory or recognition; distinction.
    2. A mark, token, or gesture of respect or distinction: the place of honor at the table.
    3. A military decoration.
    4. A title conferred for achievement.
  2. High rank.
  3. The dignity accorded to position: awed by the honor of his office.
  4. Great privilege: I have the honor to present the governor.
  5. Honor Used with His, Her, or Your as a title and form of address for certain officials, such as judges and mayors: Her Honor the Mayor.
    1. Principled uprightness of character; personal integrity.
    2. A code of integrity, dignity, and pride, chiefly among men, that was maintained in some societies, as in feudal Europe, by force of arms.
    3. A woman's chastity or reputation for chastity.
  6. honors Social courtesies offered to guests: did the honors at tea.
  7. honors
    1. Special recognition for unusual academic achievement: graduated with honors.
    2. A program of individual advanced study for exceptional students: planned to take honors in history.
  8. Sports The right of being first at the tee in golf.
  9. Games
    1. Any of the four or five highest cards, especially the ace, king, queen, jack, and ten of the trump suit, in card games such as bridge or whist.
    2. The points allotted to these cards. Often used in the plural.
TRANSITIVE VERB: hon·ored , hon·or·ing , hon·ors
    1. To hold in respect; esteem.
    2. To show respect for.
    3. To bow to (another dancer) in square dancing: Honor your partner.
  1. To confer distinction on: He has honored us with his presence.
  2. To accept or pay as valid: honor a check; a store that honors all credit cards.

IDIOM: honor bound
Under an obligation enforced by the personal integrity of the one obliged: I was honor bound to admit that she had done the work.

PARENT - NOUN:
  1. One who begets, gives birth to, or nurtures and raises a child; a father or mother.
  2. An ancestor; a progenitor.
  3. An organism that produces or generates offspring.
  4. A guardian; a protector.
  5. A parent company.
  6. A source or cause; an origin: Despair is the parent of rebellion.
VERB: par·ent·ed , par·ent·ing , par·ents
VERB: tr.
  1. To act as a parent to; raise and nurture: "A genitor who does not parent the child is not its parent" (Ashley Montagu).
  2. To cause to come into existence; originate.
VERB: intr.
To act as a parent.
MOTHER: NOUN:
  1. A woman who conceives, gives birth to, or raises and nurtures a child.
  2. A female parent of an animal.
  3. A female ancestor.
  4. A woman who holds a position of authority or responsibility similar to that of a mother: a den mother.
  5. Roman Catholic Church
    1. A mother superior.
    2. Used as a form of address for such a woman.
  6. A woman who creates, originates, or founds something: "the discovery of radium, which made Marie Curie mother to the Atomic Age" (Alden Whitman).
  7. A creative source; an origin: Philosophy is the mother of the sciences.
  8. Used as a title for a woman respected for her wisdom and age.
  9. Maternal love and tenderness: brought out the mother in her.
  10. The biggest or most significant example of its kind: the mother of all battles.
  11. Vulgar Slang Something considered extraordinary, as in disagreeableness, size, or intensity.
ADJECTIVE:
  1. Relating to or being mother.
  2. Characteristic of a mother: mother love.
  3. Being the source or origin: the mother church.
  4. Derived from or as if from one's mother; native: one's mother language.
TRANSITIVE VERB: moth·ered , moth·er·ing , moth·ers
  1. To give birth to; create and produce.
  2. To watch over, nourish, and protect maternally.
CARE - NOUN:
  1. A burdened state of mind, as that arising from heavy responsibilities; worry.
  2. Mental suffering; grief.
  3. An object or source of worry, attention, or solicitude: the many cares of a working parent.
  4. Caution in avoiding harm or danger: handled the crystal bowl with care.
    1. Close attention; painstaking application: painting the window frames and sashes with care.
    2. Upkeep; maintenance: a product for the care of fine floors; hair care products.
  5. Watchful oversight; charge or supervision: left the child in the care of a neighbor.
  6. Attentive assistance or treatment to those in need: a hospital that provides emergency care.
VERB: cared , car·ing , cares
VERB: intr.
  1. To be concerned or interested: Once inside, we didn't care whether it rained or not.
  2. To provide needed assistance or watchful supervision: cared for the wounded; caring for an aged relative at home.
  3. To object or mind: If no one cares, I'll smoke.
    1. To have a liking or attachment: didn't care for the movie.
    2. To have a wish; be inclined: Would you care for another helping?
VERB: tr.
  1. To wish; desire: Would you care to dance?
  2. To be concerned to the degree of: I don't care a bit what critics think.


STRENGTH - NOUN:
  1. The state, property, or quality of being strong.
  2. The power to resist attack; impregnability.
  3. The power to resist strain or stress; durability.
  4. The ability to maintain a moral or intellectual position firmly.
  5. Capacity or potential for effective action: a show of strength.
    1. The number of people constituting a normal or ideal organization: The police force has been at half strength since the budget cuts.
    2. Military capability in terms of personnel and materiel: an army of fearsome strength.
    1. A source of power or force.
    2. One that is regarded as the embodiment of protective or supportive power; a support or mainstay.
    3. An attribute or quality of particular worth or utility; an asset.
  6. Degree of intensity, force, effectiveness, or potency in terms of a particular property, as:
    1. Degree of concentration, distillation, or saturation; potency.
    2. Operative effectiveness or potency.
    3. Intensity, as of sound or light.
    4. Intensity or vehemence, as of emotion or language.
  7. Effective or binding force; efficacy: the strength of an argument.
  8. Firmness of or a continuous rising tendency in prices, as on the stock market.
  9. Games Power derived from the value of playing cards held.
FAITH - NOUN:
  1. Confident belief in the truth, value, or trustworthiness of a person, idea, or thing.
  2. Belief that does not rest on logical proof or material evidence. See Synonyms at belief, trust.
  3. Loyalty to a person or thing; allegiance: keeping faith with one's supporters.
  4. often Faith Christianity The theological virtue defined as secure belief in God and a trusting acceptance of God's will.
  5. The body of dogma of a religion: the Muslim faith.
  6. A set of principles or beliefs.

MIRACLE -
NOUN:
  1. An event that appears inexplicable by the laws of nature and so is held to be supernatural in origin or an act of God: "Miracles are spontaneous, they cannot be summoned, but come of themselves" (Katherine Anne Porter).
  2. One that excites admiring awe.
  3. A miracle play.




Definitions found at http://education.yahoo.com/reference/dictionary/