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.

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.
7. 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.
8. To endure; tolerate: "At supper there was such a conflux of company that I could scarcely support the tumult" (Samuel Johnson).
9. To act in a secondary or subordinate role to (a leading performer).

NOUN:

1. 1. The act of supporting.
   2. The state of being supported.
2. One that supports.
3. 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.
2. 1. Good name; reputation.
   2. A source or cause of credit: was an honor to the profession.
3. 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.
4. High rank.
5. The dignity accorded to position: awed by the honor of his office.
6. Great privilege: I have the honor to present the governor.
7. 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.
8. 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.
9. honors Social courtesies offered to guests: did the honors at tea.
10. 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.
11. Sports The right of being first at the tee in golf.
12. 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. 1. To hold in respect; esteem.
   2. To show respect for.
   3. To bow to (another dancer) in square dancing: Honor your partner.
2. To confer distinction on: He has honored us with his presence.
3. 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.
5. 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.
6. Watchful oversight; charge or supervision: left the child in the care of a neighbor.
7. 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.
4. 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.
6. 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.
7. 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.
8. 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.
9. Effective or binding force; efficacy: the strength of an argument.
10. Firmness of or a continuous rising tendency in prices, as on the stock market.
11. 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/

Our Advisors

I'd like to take a few minutes to introduce our Board. Because I do the blog postings and the office work, people mistake me as the "face behind CHERUBS"..... which is so untrue. I am one of many who make our wonderful organization run. We have the most amazing volunteers and I will be writing about them as well soon, and also adding stories and videos of members too. But for right now, I'd like you all to meet some very special people:

Parent Advisors
(in no particular order)

Judi Toth - mom of cherub with wings, Christopher Michael Toth, Judi has been a member of CHERUBS for 11 years. She was our Secretary for several years until her work and health didn't allow for volunteering as many hours as she was. Judi has spent 1000's of hours volunteering over the years, from helping to create our database to planning events in Washington DC for us, she has been invaluable to CHERUBS. Even through 9/11 when she was in the Pentagon as it was hit, she still called us to let us know she was ok and to check on other members. She often calls CHERUBS her "second baby" and she means it sincerely. When Shane died Judi stepped in and handled all of CHERUBS affairs so that I could have time to grieve my son without worrying about our organization. She also helped plan his funeral and held my hand those days following his death. That is the type of person that Judi is and I know she makes Christopher proud.

Tara Hall - mom of cherub on earth, Brandon Hall, who has taught us all a lot about feeding issues and reherniations. Tara is also our Ohio State Representative and has planned 10 years of Ohio picnics very successfully. Always ready to lend an ear or offer encouragement, Tara has been a shoulder for 100's of CDH families. When my son died Tara immediately hopped into her car and drove from Ohio to North Carolina without any hesitation, no matter that long drive or how emotionally hard it must have been for her. Tara has the highest of integrity and has been a constant source of inspiration and support to me and so many other CDH families.

Stephanie Olivarez - mom of adorable Shelby Olivarez, Stephanie joined CHERUBS just last year but within weeks stepped up to volunteer and she has become such a huge part of all we do at CHERUBS we don't even remember what it was like without her! Stephanie and her husband, Shane, held an ATV Rally in Indiana in honor of Shelby and CHERUBS and did a phenomenal job of raising CDH Awareness. Steph is our Indiana State Representative as well as our Volunteer Coordinator for State and International Reps. She also stepped up to help plan the 2008 CDH Conference and Angel Ball and without her, neither event would've been possible. She does all this, raises 4 beautiful little girls, and still keeps up with all our members offering them prayers and encouragement. Stephanie is family now and stuck with us CHERUBS members forever. :)

Barbara Wagner - mom to Logan Wagner, a teenager now.... wow! Where has the time gone? Barb has been a member for 10 yrs also I think and is such a huge help with CHERUBS I really don't know what I'd do without her! She's our Volunteer Coordinator for Committees and also holds almost every other volunteer position as well. Always cheerful, no matter what she has going on in her own life... Barb gives so much of herself to CHERUBS and CDH families. Calendars, cookbooks, anything creative.... she's our gal! She even gave me ideas for my wedding. Barb is the type of woman who makes a friend and they are like a sister to her.... we are so lucky to have her. She's our newest Advisor and we're glad to have her aboard!

Brenda Slavin - mom to cherubs with wings, Amanda and Nicholas Slavin. Brenda is the 3rd member of CHERUBS, joining us back in 1995. Mom to 2 babies lost to CDH and now a PICU nurse herself, Brenda offers a unique perspective that is so valuable to us. Also a newsletter contributor, Maryland State Representative, and conference speaker, Brenda is superwoman. She honors her babies memories, is single mom to 2 incredible kids on earth, works lots of hours helping the children in her PICU and their families and still has time for CHERUBS. Not to mention she's one heck of an amazing woman and friend. She's gotten me through grief of losing Shane, losing my sister and a divorce and kept me focused on CHERUBS.... she's done more for our organization than she knows and we love her for it.

Corin Nava -mom of cherub with wings, Gabriel Nava, Corin is easily summed up with one word - "sweetheart". Not that she's not a complicated and interesting lady but she has the sweetest personality and biggest heart and I can't imagine anyone meeting her and not immediately adoring her. She is on almost every committee, has several fundraisers throughout the year in New England for CHERUBS; whether it's baking 100's of truffles or bowling, or putting together 100's of information packets in Gabe's memory to donate to the local hospitals. The woman has energy - she does all this and has an infant, a husband, a job and she's State Representative for almost every New England state! Not to mention she's always offering encouragement and support to all the members and even offers baking advice. She's a saint... she may not agree with that statement but I still think it's true.

Darlene Silverman - grandmother to Emily. Darlene is our voice of reason and encouragement when things get rough. She's given me a virtual hug or swift kick when I need it. Her loyalty to CHERUBS and CDH families is amazing. Whether working all hours of the night with me on legal paperwork or research, she is such an amazing woman. She is the only Advisor that I haven't met in person yet and I can't wait to finally hug this woman! If it hadn't been for Darlene's constant support and encouragement, I really don't know how I would've made it through all the drama and attacks on CHERUBS in the past 2 years. No matter how discouraged I got, Darlene was right there reminding why we do what we do every day - for the cherubs and families. If there was information we needed for anything at all - she can find it. Darlene has been my guardian angel on earth and I so appreciate her and all she's done for our organization and my own sanity. :)

Elaine Moats - mom of Kristin Moats... a teenager who just got her driver's license. It still blows my mind to think she's old enough to drive now; she was so little when Elaine joined CHERUBS back in 1996 I think. Elaine... we jokingly call us "old-timers".... she's been a member of CHERUBS for almost as long as I have. Elaine has dedicated 1000's of hours to CHERUBS; all 3 cookbooks, State Representative for 4 midwest states, on almost every committee, writing 100's of letters for auctions... Elaine is just... wonderful. She is one of the calmest, most poised people I have ever met. She always knows what to say, always is quick to volunteer to help, has given so much support and encouragement to so many CDH families throughout the years. Not to mention that she's been such a source of support and encouragement to me throughout the years as well and her friendship means so much to me. I know a lot of other CDH families feel the same way.

Kara Hess - mom of Adam Hess, who is keeping his mom hopping lately and whom we hope feels better soon. Kara.... she's been an Advisor less than a year I think but she's made such an impact. Kara is so funny, so honest and blunt - and we need that! Not that we don't have Advisors who are also funny, honest and blunt... Kara is just a breath of fresh air, a new CDH mom to stir things up with all of us "old-timers". When I'm wrong, she tells me. When we throw out a bad idea, she let's us know. When one of us needs encouragement or some spiritual comfort - she's there, offering words or a laugh or a funny photo or scripture. She is such a good Christian.... one that I look up to and want to be more like. Married with 2 young boys, she has her hands full but still has time for all we have going on at CHERUBS and supporting members as well. Though Kara is a new Advisor and friend, she is a dear one... to so many of us.


Heidi Cadwell - mom to cherub on earth, Tanina Cadwell. Tanina... our walking miracle cherub... ok, all cherubs are walking miracles but Tanina is a walking miracle cherub who goes even farther than just being a "normal" kid - she's an extraordinary teenager achieving goals that would be hard for even adults to do. And a huge reason behind that is her amazing mom, Heidi. Heidi is another "old-timer", having joined us around 1998. Heidi has had more than her share of troubles the past few years but she takes on each challenge with such dignity and grace and determination.... it's so easy to see where Tanina gets all those amazing qualities (not that Frank isn't great too!). And through it all, Heidi has been there for CHERUBS. Sometimes not as much as she wants to be involved in things but we all know she's there, quietly encouraging us, silently praying for us and still wanting to help others. Heidi was a teacher for years, helping children to learn. A foster mom to so many kids, giving them a home and love. And she's held many volunteer positions at CHERUBS throughout the years as well. She has the biggest heart and cares so much for others.... the world would be a much better place if there were more Heidi Cadwell's in it.

Our amazing Advisors.... those behind the scenes with me helping to keep the organization going. Our members have no idea how much time and love they all donate to CDH families. How many hours they lose with their own cherubs and families to make sure that all CDH families have the information and support that they need. All volunteering - no one at CHERUBS is paid a salary. They all give of themselves because our cause is so important to them... and they so honor their cherubs' memorys and lives. I am so grateful to know each one of these wonderful women.

So how do you become an Advisor? Our Advisors were chosen many years ago when we needed them for updating our 501(c)III paperwork. Most of our Advisors have been on the Board since then, with a few additions that have been voted in in the past 2 years to shake up ideas a bit and we've only lost 3 Advisors in 14 years - all due to needing more time with their families and all 3 are welcome back on the committee at any time. All of them are very active in our organization as members and Advisors. They are all quick to help, respond and do what they can for CHERUBS and CDH families. We've been very lucky to have so many dedicated people who volunteer their time and hearts to CHERUBS and to families affected by Congenital Diaphragmatic Hernia.


Professional Advisors

Our Professional Advisors are equally amazing; caring for CDH babies and their families health and their rights. They have all given countless hours of advice, support, encouragement, referals, and been by our side for years - helping us to help CDH families. Without them, CHERUBS would not have come as far as we have. Their support for our organization and CDH families has been overwhelming and so appreciated over the years. They are the true fighters for CDH families and babies.

Lesli A. Taylor, MD
Vice-President
Professor Director, Division of Pediatric Surgery
East Tennessee State University

Rachel L. King, RN
Medical Advisor
Nurse Supervisor; Pediatric Intensive Care Unit
Duke University, Durham, North Carolina
Board Member

Vincent R. Adolph, MD
Medical Advisor
Department of Pediatric Surgery
Ochsner Clinic, New Orleans, Louisiana

Michael R. Harrison, MD
Medical Advisor
Professor of Surgery and Pediatrics
Director, Fetal Treatment Center
University of California, San Francisco

Aviva L. Katz, MD
Medical Advisor
Division of Pediatric Surgery
Alfred I. du Pont Institute, Philadelphia, Pennsylvania

Jacob C. Langer, MD, FRCS(C)
Medical Advisor
Chief, Pediatric General Surgery
Hospital for Sick Children, Toronto, Ontario, Canada

Cynthia M. Powell, M.D.
Medical Advisor
Assistant Professor of Pediatrics
Division of Genetics and Metabolism
University of North Carolina
Chapel Hill, North Carolina

Prem Puri, MS, FACS
Medical Advisor
Consultant Pediatric Surgeon
Children's Research Centre
Our Lady's Hospital for Sick Children
Crumlin, Dublin, Ireland

Jay Mark Wilson, MD
Medical Advisor
Assistant Professor of Surgery, Harvard Medical School
Associate in Surgery; Director, ECMO Program
Boston's Children's Hospital, Massachusetts

Claudine P. Torfs, PhD
Honorary Medical Advisor
Epidemiologist
California Birth Defects Monitoring Program

Betty Mekdeci
Professional Advisor
President & Founder
Birth Defect Research for Children
Celebration, Florida

M. Shane Perry
Attorney at Law
Legal Advisor
Morrisville, North Carolina